Category Archives: Treatments

A primer on immunosuppressive medications for eczema from a parent’s point of view-cyclosporine, azathioprine and methotrexate

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I am really sorry for not having written anything for a really long time now. I have been busy with my Functional Medicine Health Coaching Course (from the US based Functional Medicine Coaching Academy) and my Dietetics and Nutrition course. The Health Coaching course has been an immensely enjoyable and fulfilling experience and I become a Certified Health Coach next month! I will write more on that next time. This post is about something else.

I have written quite a while back on a comparison between 2 immunosuppressive medications that my daughter has been on earlier on. In this post, I want to write about one more immunosuppressive medication that my daughter has been on since the past couple of years and it is called methotrexate.

Before I go any further though, I would like to out some things in perspective. Since these medications are very powerful and potent drugs, these medications are the last line of treatment for Atopic Dermatitis. They do not “cure” eczema, they are given to manage severe eczema which are not being managed by other lines of treatment. These are usually given for many months or years depending upon the patient’s condition. These medications are not given to any patient, child or adult, unless all other forms of treatment (moisturisers, topical steroids, narrow band UVB, wet wrapping, oral steroids) have failed to reduce suffering due to severe eczema or even bring it under control.

Also, I would like to mention that while we certainly had no choice in giving our daughter these medications, initially I did not know that there was anything other way that we could bring her very severe eczema under control. However, I am really happy to say that this is no longer the case and if you have been following my blog posts you will know what I am talking about her Functional Medicine treatment. I would also like to mention here that my daughter’s condition is much better now. We have lowered her dosage and are looking at hopefully gradually continue to lower and finally discontinuing her medication in the near future. But I will cover that in my next post.

A few things which are common to all these types of medication are as given below-

  • they need to given and monitored regularly by health professionals to monitor for adverse side effects
  • dosages and frequency are different for each drug and must be followed meticulously
  • since these medications work by suppressing the immune system, precautions must be taken to limit exposure to infections
  • usually live vaccinations are not given to patients (children) who are on these medications

Cyclosporine and our experience

Cyclosporine was our first introduction to immunosuppressive medications in 2012. Aiyana was already on oral steroids at that time to manage her very severe eczema which had escalated beyond control and she initially needed an a fast acting intervention like oral steroids. The doctors prescribed cyclosporine as the systemic drug to help manage her severe eczema.

Cyclosporine works by blocking the body’s inflammatory process which can reduce itching and rashes. After about 6 months of being on this medication in 2012, we switched to azathioprine in 2013 as recommended by another dermatologist. However, we had to come back to this medication once again in mid 2013 since azathioprine had a disastrous effect on her health. She was on cyclosporine for another year till we switched over to the third immunosuppressive medication methotrexate in late 2104.

A word of caution

However like any other such drug, the side effects of cyclosporine are many and in particular it can affect the kidney and blood pressure adversely. Hence, regular blood tests need to be carried out to determine kidney function in particular and to monitor other health parameters.

Research

Cyclosporin in the treatment of severe atopic dermatitis: a retrospective study- https://www.ncbi.nlm.nih.gov/pubmed/15175770

Azathioprine and our experience

Azathioprine was the second medication that we used to manage our daughter’s eczema. She had already been on cyclosporine for a year and a half and the doctors wanted to get her off cyclosporine since it clearly had not been very effective in managing her eczema very well.

Azathioprine is another type of immunosuppressive medication which is used for many autoimmune conditions including atopic dermatitis. It was originally developed to prevent infections due to transplanted organs like the kidneys. It takes longer than cyclosporine to take effect and is not used for acute cases of eczema due to the time taken. Since one of the main side effects of azathioprine is bone marrow suppression, a blood test measuring an enzyme called TPMT (anthiopurine methyltransferase). Those with low levels of TPMT are unable to break down azathioprine in the normal way and are at high risk of dangerous bone marrow suppression. Hence, those with very low levels of TPMT are not given this medication.

A word of caution 

However, as we realised to our dismay, just getting the TPMT levels tested and taking a decision of giving azathioprine to someone may not work out as planned at all. And we also learned a HUGE lesson in terms of how things can go terribly wrong even when all known rules and protocol are followed. Our daughter was one of the outliers who suffered from the disastrous side effects of azathioprine inspite of having completely normal and within range TPMT levels. Infact, it was this experience that led me to search extensively another form of intervention for her. I have written about this in details in my earlier blog posts- https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/. 

Azathioprine can have a host of side effects apart from the bone marrow and can also affect the liver adversely.  Tests are done regularly to ensure liver, bone marrow and other organs are working properly.  Any symptoms like hair loss, flu like symptoms and any others should be looked into immediately.

Research-

A retrospective evaluation of azathioprine in severe childhood atopic eczema- https://www.ncbi.nlm.nih.gov/pubmed/12174104

Methotrexate and our experience

Methotrexate was the third immunosuppressive medication that our daughter was prescribed in 2014 and she is still on this medication as of now. This drug has worked for her pretty well and she is now on a reduced dosage. With a very good response to the Functional Medicine treatment which is now finally showing its impact after being on this treatment for almost 2 years.

Methotrexate is actually a drug used mainly for treating psoriasis and rheumatoid arthritis. Methotrexate belongs to a class of drugs known as antimetabolites and also works by suppressing the immune system.

A word of warning

Methotrexate can also cause some serious side effects by affecting the bone marrow, liver or lungs and once again regular blood tests are a must to monitor the effects of this medication.

Research

http://www.mdedge.com/edermatologynews/article/100861/atopic-dermatitis/wcd-methotrexate-found-safer-less-effective

The other side of the story

While I have given above an account of our experiences with the various drugs, I would also like to point out the other side of the story- these drugs help save many lives. The primary objective of these medicines is to suppress the immune system. They improve the chances of a patient to successfully undergo an organ transplant by preventing the organ getting rejected by the immune system. These medications are also used in other conditions like severe eczema, rheumatoid arthritis and other conditions as well where the immune system is involved. No matter what the reason for taking these medications, these medications should be taken only if prescribed by a qualified medical professional and should be monitored regularly under his care.  

 

Just show up…

Show up

As someone once said, “sometimes the bravest and the most important thing you can do is just show up“. This is especially true when we really do not like the turn our life has taken. It is true when we want to find a better way of dealing with our problems but we do not have a choice right at that moment and so we go along with it. This is what it feels like for us when we give our daughter these medications. But I know that I am doing the right thing for her at this moment and at the same time I also know that I am doing whatever it takes to hopefully enable her to lead a healthy life without depending on any medications.

But whether I succeed in this or not, I will always know that I never shied away for showing up for whatever life has to offer us. This is what enables us to deal with eczema and its effect in our lives. This is also what makes life seem so enjoyable and memorable for all of us and is so much more than any difficult circumstances, illness and medication.

 

 

Thank you for your part in our journey

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New Year's resolutions

Another year comes to an end and yet another one begins

I wish you and your family a year filled with good health and happiness. I completed 3 years of writing this blog in October last year and it has been an amazing experience for me. As always, I am reminded once again about how fortunate we are as a family in all that we have and how grateful I am for the love and support of my family and friends. We also remain grateful to the wonderful support shown by our doctors in being there for us every step of the way. So thank you all for simply being a part of our lives!

I feel honoured to be able to share with you our experiences in dealing with eczema and most importantly to be able to share with you our experiences of dealing with eczema with the help of Functional Medicine protocol. I  want to emphasize upon this last bit since most of you may not be aware that such an option/treatment exists. I have written about this in my earlier post- https://eczema-anindianperspective.com/2015/09/10/the-functional-medicine-and-gut-health-approach-to-managing-chronic-conditions-including-eczema/

We are now mostly familiar with the conventional medical treatments but have lost touch with many others some of which used to be a part of our own culture like ayurveda. In fact, Functional Medicine is similar to our ancient Ayurvedic tradition in many ways since it approaches the individual as a whole and does not just treat the symptoms. However, it differs in many ways since it incorporates the latest science and research, diagnostic testing, use of nutraceuticals amongst others.

Life is full of ups and downs; the trick is to enjoy the ups and have courage during the downs

Road to Eldorado

It has been a while since I have given an update on my daughter’s skin condition and treatment. Since I last wrote about the essential oils, there has been a lot of upheaval with regards to my daughter’s condition. Staph infection, caused by the bacteria Staphylococcus aureus is very common among those suffering from eczema. It is a very common bacteria residing on our skin and is invisible for all intents and purposes most of the times. But for those with eczema/sensitive skin it tends to create problems by causing infections. My daughter had recurring bouts of this infection starting in August last year. It notoriously difficult to get rid of once it gets entrenched. This led to a couple of rounds of antibiotics and oral steroids to control her skin condition which had deteriorated rapidly. These medications were  added on top of her immunosuppressive medication, Methotrexate, which also had to be increased to manager her eczema.

Thus, till about mid November last year, it was again a very trying time for us as a family. We had to deal with her eczema flare up which had actually became a constant feature since August and  it had also somewhat as a shock for us. This was because her eczema had been fairly under control for the past 10 months or so under the Functional Medicine treatment and her medication had been brought down gradually. As part of the treatment we got her Functional Medicine tests like Comprehensive Stool Analysis and Optimal Nutritional Evaluation done to determine her gut/microbiome health and her levels of vitamins, minerals, amino acids, antioxidants and other metabolic markers from the European Genova Diagnostics laboratories.

While the stool test did show some improvement from the earlier test done in January last year, the urine test was a bit of a disappointment but at the same time shed some light on her flare up. The urine metabolite test showed a huge amount of oxidative stress. Oxidative stress is akin to the process of combustion in our cells which use oxygen that we breathe in and food as fuel to provide our body with energy. However, in the process of creating energy, some byproducts in the form of extremely volatile free radicals are created which are usually neutralized by our body’s natural antioxidants. But when our body becomes overwhelmed by oxidative stress and/or there are not enough antioxidants to combat oxidative stress, problems occur. Infact this is the process of ageing that we all face over the course of our lives.

However, once we figured this out and boosted her supply of antioxidants with foods and supplements, her skin condition improved gradually. I increased her intake of natural antioxidants like strawberries, blueberries, blackberries, raspberries, spinach, Brussel sprouts, broccoli, beetroot and other colourful fruits and vegetables in various forms such as soups, smoothies, side and main dishes. Under the guidance of our Functional Medicine practitioner her intake of antioxidants like Vitamin A, C and D as supplements were also increased.

Other natural and traditional interventions

herbal medicine in capsules.

For the past year or so, I have been dabbling in and increasing my knowledge of traditional and natural interventions using local herbs and spices to manage eczema and other minor health issues. Over the past 6 months or so I had introduced a Curcumin supplement in a highly bio absorbable form. It is the main active ingredient in our local spice called turmeric used regularly in most of the Indian dishes, but for therapeutic needs one needs to consume much more than we can usually do from food alone. Curcumin is a super antioxidant and is highly anti-inflammatory at the same time. I use the Indian brand Cure Garden Daily Defense  and I increased the dosage to combat her oxidative stress.

The other supplement that I had added at the same time is a popular herb called Tulsi (or holy basil) from the brand Organic India Tulsi. Tulsi is a very important herb available locally and is used extensively in our Ayurvedic treatments. It is an adaptogenic herb and is thus very good for stress management, has antibacterial properties and increases the activity of antioxidant enzymes amongst a host of other benefits.

The other 2 local herbs that I introduced were neem from Himalaya Herbals (or Margosa) and Guduchi. Neem is again a common and popular local herb which is extremely beneficial for improving skin health and boosts immune and liver function. Guduchi is an adaptogenic herb, boosts the immune system and improves liver function amongst other things and is again beneficial for the skin. Then there are a few other herbs like berberine and burdock root that I use internally as well according to traditional Chinese medicine to enhance liver detoxification amongst other things. I intend to write about such herbal and natural interventions in a separate post later this year. I also intend to pursue a course in herbal treatments to take advantage of the vast natural resources that our country has in creating health and which we seem to have lost touch with.

Therapeutic grade essential oils continue to be the mainstay of our fight against staph infection. Lavender, tea tree, geranium and other essential oils from the brand Eden Garden are the ones that I use diluted with coconut oil as a carrier oil for applying locally. I have already written about this in greater details in my last blog post a while back – https://eczema-anindianperspective.com/2016/05/27/essential-oils-for-managing-eczema/.

Hopefully, once again over a period of time I will be able to phase out her medications with the help of her doctors. We have a long way to go yet and the road ahead may yet be a winding one but I know that we are pretty much prepared for our journey.

Reclaiming optimal health 

optimal wellness in wood type

You may be aware from my earlier posts that I am a certified Health Coach from the US based Dr Sears Wellness Institute. However, I have not mentioned earlier that I am currently pursuing a one year course with the Functional Medicine Coaching Academy (FMCA) which is offering this course in collaboration with the Institute of Functional Medicine (IFM). My daughter’s ongoing treatment is with the help of a UK based IFM certified practitioner, Pete Williams. My course is an exhaustive one and encompasses diverse topics like positive psychology, coaching process, motivational interviewing and functional nutrition, Functional Medicine structure and operating system like the GOTOIT, Timeline and Matrix; mind body techniques and various relevant systems and technologies.

fmca-coaching-center-ifm

As a part of my curriculum practicum I have already started counselling a few clients with various health issues on diet, lifestyle changes amongst others. I am really looking forward to completing this course and setting up a clinic in Mumbai. This clinic will be in conjunction with my daughter’s dermatologist and the coauthor of my book “ I have eczema…so what?”, Dr Amrita Talwar later this year. I hope to bring my personal experience of dealing with my daughter’s autoimmune condition with dietary, lifestyle and other changes to the table apart from all the knowledge that I would have gathered in my course as a certified Health Coach.

Alone we can do so little, together we can do so much

I always knew that it is difficult to tackle problems including health related alone, but I realised how critical a support system really is during our darkest days. Our support system of family, friends and health professionals acted as a kind of a well knit community and enabled us to pull through. It is time for me to give something back now using my experience and knowledge. I look forward to doing my bit in building a community focussed on creating optimal health at a time when chronic conditions are rising exponentially and conventional treatments are falling short . As Dr Mark Hyman (Chairman, IFM Board of Directors and Director of the Cleveland Clinic Center for Functional Medicine) has said “The power of community to create health is far greater than any physician, clinic or hospital”. I am excited and look forward to this new chapter in my life.

As a wise person had once said ” Optimal health is a journey taken one step, one habit, and one day at a time“.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Essential oils for managing eczema

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Eczema has been a great teacher. Over the past 8 or 9 years of dealing with my daughter’s eczema, I have learned many lessons though often reluctantly. Infact my whole family has. My daughter has learned what it means to be strong during very tough times and also how to deal with the many challenges she has faced in her young life. As a family we have learned the importance of showing our love for our daughter and being supportive; being there for her no matter what. Personally, eczema has taught me what patience is all about and that often there is a silver lining behind the grey cloud on the horizon. Of course, we have learned many other lessons as well, but these to my mind are the most important ones.

In the quest to learn more about this chronic condition which has been our constant companion for almost a decade now, I have learned a lot. I have been writing about it in my blog for almost three years now. I have written about the Functional Medicine treatment that my daughter is on currently. She is in fact responding very well to the treatment and we are in the process of lowering her immunossupressive medications.  But that topic is for my next blog post, today I am writing about another aspect of treating eczema.

Our experience with essential oils

I first came across essential oils in a meaningful and relevant manner in October last year. Before that mostly what I knew about essential oils were from my visits to the spa or salon and/or from fragranced beauty and other bath products. But even then I came to know much later that the fragrances in the usual beauty and bath products are actually artificial chemicals which try to imitate the natural fragrances of plants.

Last October, my daughter’s doctors were struggling to control her widespread staph infection due to the skin wounds from her constant scratching. Staph infection is a bacterial infection caused due to the presence of the bacteria Staphylococcus Aureus (or staph in short) which gets in through the cracks in the cuts and wounds on eczema prone skin. It is commonly present in those with healthy skins as well but is usually not able to create as many issues. The doctors had to give her two back to back week long dosages of antibiotics when the infection came back within 2 weeks of completing the first round of antibiotics. And even after that the infection was not completely under control and she was very itchy, inflamed and uncomfortable.

I was desperate enough to try bleach bath for her where I diluted household bleach with bath water and forced her to take a bath in it in an effort to get rid of the infection. It is a practice used to control severe staph infections in those with eczema. It was a a very painful time for her since the bleach bath used to sting her whole body. I felt like a really horrible person and mother for inflicting this kind of suffering on my daughter but my desperation forced me to try it out. Those were very trying times filled with pain and tears for all of us but thankfully they are behind us now. Now my daughter is able to enjoy both her bath and swimming lessons after many years. Essential oils came to our rescue and brought the infection under control and we have not looked back since.

 

(Further reading

Staph

https://www.sciencedaily.com/releases/2013/10/131030142414.htm)

Essential oils and Aromatherapy 

Aromatherapy

Unfortunately, in our zeal to embrace modern versions of medicine, quite a few of us have lost touch with other forms of treatment which can be equally effective. Luckily, I was thrust in the midst of the wonderful aromatic world of plant based therapy which have actually been used by man for millennia. But keep in mind that I am referring to the class of essential oils that are of therapeutic grade due to their 100% purity and which can be used for healing purposes. There are no bases, fillers or additives added. Most of the essential oils which are available in the market are not of therapeutic grade but are diluted and are good only for cosmetological needs and consumer products. I will be writing more about the brands and the companies that I use for managing eczema later in this post.

Essential oils are volatile liquids and are made mostly by a distillation process by extracting these from the leaves, flowers, seeds, roots and resins. The process of distillation separates the water and oil based compounds of the plant and makes the oil highly concentrated.  Infact it takes about 30 kgs of rose petals to make just about 15 ml of rose essential oil! This makes essential oils highly potent and effective for healing purposes. Essential oils have antibacterial, antifungal, antiseptic, antiparasitic, anti-inflammatory and highly therapeutic properties.  But like any other treatment, essential oils need to be treated with respect and with due knowledge of how to use them. Also, just like other treatments, aromatherapy works best in  combination with conventional treatments (if required for an existing condition), a good balanced and healthy diet, a daily stress management routine and regular excercise. 

(You can read more about them at

https://www.naha.org/explore-aromatherapy/about-aromatherapy/what-are-essential-oils

http://www.sciencedirect.com/science/article/pii/S2221169115001033)

All oils are not created equal

bunch of lavander

As I have mentioned earlier, there are different grades of essential oils. The ones I am referring to for managing eczema and other medical conditions are specifically therapeutic ones. The other ones might be much cheaper but will not have the healing properties that you need. In any case, since these oils are highly concentrated and very potent, only a few drops are needed at a time. They also have to be diluted at all times for topical applications even though there are a few exceptions.

The essential oils I use for managing staph infections and at the same time healing eczema prone skin are lavender, tea tree, geranium, clary sage, clove and oregano. I make a blend of oils by mixing 2 to 3 oils with a carrier oil (coconut oil) and use it to moisturise my daughter daily. Lavender and tea tree essential oils are the most important ones that I use every time while I add a third oil from the remaining list. Also keep in mind that clove and oregano are warming and highly potent oils and I use it mostly for fighting infections and not daily use. I do not use more than 5 to 6 drops of each in the blend and make up the rest with the remaining oils that I am using for that blend.

The dosage for the oils for a 3% topical (recommended) application is 30 drops of the essential oils (10 drops of each oil if using 3 essential oils) mixed with 30 ml of the carrier oil (coconut oil). In case of very young children and babies, you can start with a 1% 0r 2 % dilution which means about 5 to 6 drops of each oil ( or around 15 drops in all) mixed with 30 ml of the carrier oil. You also can use this concentration for maintenance  purposes once the skin infection has come under control.

A note of caution:  Avoid using essential oils on very young children (less than 2 years) and babies. If it is necessary to use for stubborn infection, use ones which are gentle on their delicate skin like lavender, tea tree and geranium and with maximum dilution. You can also buy a blend called Eczema Helper from the brand Plant Therapy made especially for children from 2 to 10 years of age. So far I have not been able to find any shopping site which ships this product to India apart from the Plant Therapy website itself and the link is given below-   

http://www.planttherapy.com/eczema-helper

The amounts of the essential oils should be increased or decreased in proportion to the carrier oil used. The blend should be kept in a glass bottle in a dark area well away from sunlight or any other source of light and heat. This blend can be applied whenever and wherever on the body moisturisation is required.

There are a few companies based in the US like Edens Garden, Plant Therapy, Young Living and Do Terra from where you can buy therapeutic grade essential oils . However, only Edens Garden Essential Oils and Plant Therapy Essential Oils are available as of now on Ebay India.  Sometimes, some of the other brands are available on Amazon India and Rediff shopping but are more expensive.  You can use the following link on Ebay India to buy the Edens Garden and Plant Therapy brand of essential oils–

Natural coconut oil
Also, equally important is the carrier oil used to dilute the essential oils. I have now been using cold pressed coconut oil to moisturise my daughter’s skin through all seasons successfully for more than a year now. Infact coconut oil itself has antimicrobial properties. I use the organic cold pressed coconut oil from Conscious Foods that is available at various retail stores including Godrej Nature’s basket, Foodhall (Mumbai) and online stores like Amazon India, naturalmantra.com, Foodesto.com and allthingsorganic.com amongst others. But you can use any cold pressed, unfragranced (preferably organic) coconut oil that is readily available in your area.

Stop and smell the roses

Essential oils have played a major role in managing my daughter’s skin infections and I am really happy to share it with you. I hope you find this article useful in incorporating essential oils into your eczema treatment routine.
A couple of other thoughts to leave you with.

Very often when we are pressed with stressful times in life, we forget that life is not just about tiding through tough times or “managing  situations”. It is also about enjoying time spent with family and friends, having fun, being creative and simply “doing nothing”. Infact in today’s world where we are hard pressed for time, “doing nothing” seems a sacrilege for most of us. The fact is, it is one of the most important gifts we can give ourselves. I have also had times when I felt that if I took some time out from managing my daughter’s eczema in some way or the other, I would not be a good parent. I did not feel “constructive” if I took out some time to take care of myself. But now I know that is simply not true! We all need a break from time to time to keep our sanity and remain productive.

I now use essential oils frequently for this purpose. Essential oils have an amazing array of benefits and uses. Diffusing a few drops of lavender (calming and sleep inducing) essential oils or other oils like ylang ylang, sandalwood, jasmine (to name a few) can calm you down.

As one wise person said, as you walk down the fairway of life, you must stop to smell the roses, for you get to play only one round. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A summary of some of the regular reatments for eczema

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Eczema - Printed Diagnosis on Blue Background and Medical Composition - Stethoscope, Pills and Syringe. Medical Concept. Blurred Image.

I have been writing about our experiences with eczema (or more specifically Atopic Dermatitis) for almost 2 years now. I have written about the various treatments we have tried in various posts but I realised that I have not really written in details and in a comprehensive manner about the first, second line and third line treatments that are usually used to treat eczema.

(Please note: I will refer to Atopic Dermatitis as eczema in my post from here on to simplify matters)

In this post I have written about the regular medical treatment that is used once the moisturisers alone are not able to control the inflammation. Moisturisers are an essential part of the treatment for eczema and works very well in mild forms but may not be sufficient to bring the eczema under control once the skin becomes red and inflamed in moderate to severe eczema. I have myself been confused at times with the myriad topical, steroidal and non steroidal creams that are prescribed by the doctors at various points in time. Then there are also the oral steroid medications and different immunosuppressants and phototherapy treatment that we have used to control flare ups. I believe it would help a lot of parents (and those adults suffering from eczema) if they had some idea about the basics of the different types of treatments and medications that they may be using on their child or even on themselves. It would definitely help in controlling and reducing the side effects that some of these strong medications can have on a person if not used properly.

Topical steroids

Steroid cream.

Topical corticosteroids are prescribed by the doctor/dermatologist when the skin becomes red and inflamed and the eczema does not clear up in spite of maintaining a healthy and regular bathing and moisturising routine. The topical corticosteroids range from very mild to very potent and you should be very careful in following the doctor’s instructions in using the same for your child both in terms of quantity and duration. This is especially true for young children and babies. In any case, the topical corticosteroids are prescribed only when the risks from eczema far outweigh the risks from the side effects of using these medicines. When a child suffering from eczema is unable to sleep at night due to incessant itching and thus starts affecting daily life at school and home, there is a risk of infection due to the cuts and inflamed skin, it is wise to use steroid creams/ointments as per the doctor’s advice till the time the rashes have gone.

Some important points to remember while using these medications-

  • One should start using the lowest potency steroid and only step up if required
  • Topical steroids are most effective if applied immediately after a bath but should only be applied on affected areas and not as a moisturiser
  • One should follow the doctor’s advice on the frequency of application (usually twice a day is more than enough on severely inflamed skin) and should start tapering off as instructed instead of stopping abruptly
  • Step up and the step down method (in terms of potency and frequency of steroid) needs to be maintained while using the topical steroids to keep the risks of side effects of these medications as low as possible
  • One should avoid using these medications on the face and other sensitive areas and this is all the more true for children who have very sensitive and delicate skin

Given below are the various common (but certainly not exhaustive) topical corticosteroid creams/ointments that are available in India (and ones I am most familiar with) and their potency

  • Low potency– Hydrocortisone creams (1%) are available as an OTC (over the counter) medicine in various forms like cream, ointment and lotions. This is the least potent amongst all the topical steroids but still should be used with caution especially for a child. This is especially true since this is easily available and one can unknowingly use this as a moisturiser without realising that it is still a steroid cream/ointment
  • Mild to mid potency– Steroidal creams/ointments like Desonide, Mometasone fuorate and Fluticasone propionate are available at the lower to mid end of the potency spectrum. These are brands like Desowen, Momate/Elocon and Flutivate brands in India for the respective steroidal creams/ointments respectively. The doctors will prescribe a particular steroidal cream based on the level of inflammation and rashes
  • Potent to highly potent– Steroidal creams like Betamethasone dipropionate and Halobetasol propionate are at the potent end of the corticosteroidal creams/ointment. In India we have brands like Fucibet (which also includes fucidic acid which is an antibacterial medication) and Halovate which include these steroids respectively.

You should also know there is an overlap in these topical medications since they are usually available in both cream and ointment forms and the potency for the same dosage will differ based on the form. The cream form has roughly half water and half oil, they spread easily, are well absorbed and usually wash off with water. Ointments on the other had are about 80% oil and 20% water and are thus “occlusive” which means they trap moisture and help in better absorption of the main component. Being occlusive, an ointment will allow the medication to get absorbed much more completely than a cream and hence are more potent at the same dosage as a cream.  

https://www.psoriasis.org/sublearn03_mild_potency

Application and side effects

Topical corticosteroids should be used in a step up manner in terms of increasing potency starting from a low potency and only moving up if required. Usually the doctor will prescribe the milder ones like desonide cream (brand name- Desowen) and only graduate to a stronger medication like Fucibet if required later on. Similarly, once the rashes have been brought under control, one should use the step down method both in terms of potency as well as frequency as per the doctor’s instructions.

As mentioned earlier, these medications should only be applied on affected areas and not as a  moisturiser. However, sometimes the rashes may be quite widespread all over the body. In that case, the doctor may prescribe a 1:4 ratio of a mild potency steroid like desowen to an emollient like cetraban which is then mixed thoroughly and applied all over the affected areas.

Side effects from these steroidal creams are varied and depends on the age of the person, the frequency of application, the potency of the drug amongst other factors. The thinning of the skin or skin atrophy is one such side effect which can take place if potent to highly potent steroidal creams are applied too frequently or without any break. However, one can avoid this and other side effects by following the doctor’s instructions for using this treatment and thus using this treatment as and when required, in the required quantity and for an appropriate duration. The other thing to keep in mind that in case of excessive scratching due constant itchiness in case of under medication, the skin tends to become thick and discoloured. Thus the treatment needs to be carried out in a timely manner under the supervision of a doctor and the instructions should be properly followed to minimise the side effects.

(Further reading-http://www.eczema.org/corticosteroids)

Calcineurin inhibitors

Another type of topical treatment available for eczema is the group of medications known as Calcineurin inhibitors. These are non-steroidal immunomodulators and are of 2 types- pimecrolimus 1% (Pacroma and Elidel) and tacrolimus 0.3% (Protopic). These topical medications work by suppressing the immune system and are usually prescribed to children over 2 years of age and adults and are recommended for use as a second line treatment for eczema.pacroma-cream

As with steroidal medications, these type of immunomodulators should also be applied only when prescribed by the doctor and for the recommended duration of time. Even though it does not have the side effects like thinning of the skin which is associated with steroidal treatments, one still has to be cautious while using these medications since they are relatively new medications and not much is known about their long term usage. There is a possible risk of skin cancer only in the long run after prolonged usage but it is still advisable to apply these creams at night to avoid sunlight exposure. These medications are also prescribed for eczema on the face (unlike topical steroids) and are prescribed for moderate to severe eczema only when the combination of topical steroids and emollients have not been successful.

(Further reading- http://www.ncbi.nlm.nih.gov/books/NBK45568/

http://www.ncbi.nlm.nih.gov/pubmed/14693489)

Phototherapy or Narrow band UVB

Another treatment that is prescribed once the topical treatments have not really worked for a person in controlling the eczema is phototherapy. It is used as a safer alternative to avoid using  the third line treatments of  the powerful immunosuppressive medications like azathioprine, methotrexate and cyclosporine.

In this treatment light or a particular narrow band of Ultraviolet rays are used to treat the eczema which is beneficial for skin diseases. It can be used both for localised as well as general areas of the skin covering the entire body. This treatment works effectively for some people but not for everyone and usually takes about 1 to 2 months to show the desire results. If this treatment is effective then it can effectively put the eczema in remission for a while at least. It may also minimise the usage of topical steroids and there its side effects.

Phototherapy is carried out in a special booth filled with UV rays for general treatment of eczema all over the body and hand-held devices for treatment of specific areas like hands, ankles etc. Nowadays, a high intensity phototherapy treatment is available in the form of a laser called Excimer. It is much more powerful than the regular phototherapy and emits Ultraviolet rays of a particular frequency which is used to treat different skin conditions like eczema, psoriasis etc. It is given in the form of a hand-held gadget and takes much less time than a regular phototherapy due to the high intensity of the rays and is more useful for treatment for localised areas of the body. However, one needs to be careful in protecting the eyes when undergoing this treatment. The risks associated with prolonged treatment are skin burns, increased ageing and increased risk of skin cancer. Like any other such treatment this has to be carried out under the supervision of a medical professional and all the instructions need to be followed carefully. (I have written about our experience with phototherapy in my blog post https://eczema-anindianperspective.com/2013/10/17/when-the-going-gets-tough-part-1/).

(This treatment is currently offered in the Comprehensive Skin Care Clinic run by senior pediatric dermatologist Dr Manish Shah in South Mumbai and the website is http://www.cscc.co.in/)

Oral Steroids

Steroids

The third line of treatment for eczema is the use of systemic medications like oral steroids. Prednisone is one of the most commonly used oral steroids given in cases of severe eczema where an immediate result is required and is given under strict supervision of the doctor. It is given as a daily dose starting with a high dosage and then is slowly tapered down once the eczema is under control. Oral steroids work by suppressing the immune system and helps in controlling the overactive immune system in the case of a person suffering from eczema. But this also makes it possible for the person to catch infections easily due to a weakened immune system and hence has to be monitored at all times. Also, in the case of a child, oral steroids may slow down growth and development and hence again one needs to be very careful.

There are other side effects as well which can be minimised by following instructions carefully and keeping a lookout for any symptoms which may arise on taking this medication. This is also done by carrying regular blood tests to determine adverse side effects if any. Due to the various side effects of this medication and its quick action, oral steroids are usually prescribed for short periods of time when results are needed fast. Bottomline, like any strong medications, one needs to take this under strict supervision and follow the doctor’s instructions about dosages  and how to start and stop taking this medication.

(Further reading: http://www.ncbi.nlm.nih.gov/books/NBK260241/)

Immunosuppressive medications

various tablets pills in bottle

The other third line of systemic treatments include the immunosuppressive medications like azathioprine, cyclosporine and methotrexate. These are all very powerful medications and are given only when all other options have failed to yield the desired results. All of these medications work by suppressing the immune system and hence bring the eczema under control. But once again, due to the various side effects these medications have to be given under strict supervision of the doctor prescribing this and by following all the instructions carefully. Since eczema is a chronic condition and these medications may be required to be given for long periods of time, regular testing is required to ensure that there are no side effects.

Azathioprine

Azathioprine works by tweaking the growth of certain white blood cells which contribute to the inflammation associated with eczema and thus suppresses the immune system. It takes a while longer to show results than cyclosporine and may not suitable for acute flare ups.The main side effect of azathioprine is bone marrow suppression and that is why a specific test is carried out before prescribing this medication which is called the TPMT enzyme test. This test determines the suitability of the person by determining the ease by which the person is able to break down azathioprine in the normal way. However regular testing would be required to keep a track of any adverse effect on the immune system. This medication is taken orally in the form of tablets and on a daily basis in the prescribed dosage.

We had a traumatic experience with this medication which was prescribed by a leading pediatric dermatologist in London for our then 7 year old daughter. In her case, even though she had a normal TPMT result, her body reacted disastrously to this medication and she suffered from bone marrow suppression and had to fight for her life. This was a one in a million kind of event and has never happened before to someone with normal TPMT levels. I have written about our experience in my post in 2013  and you can read about it at https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/.

Cyclosporine

Cyclosporine is another systemic immunosuppressant used to bring severe eczema under control and works by specifically blocking an important pathway in the immune system, and has different side effects than steroids. It is prescribed in low doses for eczema under strict supervision and once the eczema is under control, the medication is tapered off. One of the main risks associated with this medication is damage to the kidney especially with increased dosage and duration of medication and hence regular tests would be required to monitor the kidney activity. This medication has to be taken orally on a daily basis as per the prescribed dosage.

(I have written more about our experience of dealing with cyclosporine and azathioprine medications in my blog post where I have compared both at https://eczema-anindianperspective.com/2014/02/10/azathioprine-and-cyclopsorin-an-overview-of-two-immunosuppressive-medicines-used-to-control-my-daughters-eczema-from-a-parents-point-of-view/).

Methotrexate

Methotrexate is another systemic immunosuppressant which is used mainly in treatment for psoriasis and different types of arthritis. It is also given in low doses in cases of severe eczema and usually takes longer to work than cyclosporine. It has anti inflammatory properties and works by altering the body’s use of folic acid (a vitamin) which is needed for cell growth. Thus a folic acid supplement is a must on a daily basis for those taking this medication. This medication is taken once a week in the form of tablets. This dosage may also be split up into 2 doses taken within 24 hours to minimise any nausea that may occur. One of the main possible side effects of this medication is again adverse effects on the immune system especially on the white blood cells (which fight infection) and platelets (which help stop bleeding). Thus regular blood tests are required to keep a look out for any adverse side effects.

(Further reading- http://rheuminfo.com/medications/methotrexate/methotrexate-detailed-information)

Sometimes the hardest thing and the right thing are the same

Sometimes we don’t have a choice as far as giving strong medications to our child is concerned when the child is suffering from a severe chronic condition which adversely affects daily living. Of course we would prefer to find some alternative which is much safer and without any of the side effects that I have mentioned above. As of now we have not managed to bring our daughter’s eczema into remission and she needs constant medication in order to live a relatively normal life.

Things can also go horribly wrong like it did in our case in spite the very best of intentions. We have been very lucky and have learned to take this in our stride and be more vigilant in the future since our daughter still requires immunosuppressants to keep her severe eczema under control. This has not stopped us from looking for other options and neither should you. As one wise person had said, it does not matter how slowly you go as long as you do not stop.

The Functional Medicine and Gut Health approach to managing chronic conditions including eczema

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I have written briefly about Functional Medicine earlier in my posts. I have also mentioned how I have gradually moved towards it over the past couple of years through my research to find a less harmful way of managing my daughter’s extremely severe eczema. I  have shown her to a Functional Medicine practitioner in London this past July and got some tests done to determine her Gut Health. The tests show that she indeed has a “leaky gut” or “intestinal permeability” issue. But before I get to that, in this post I would like to cover Functional Medicine and Gut Health in much more details and why we should all know more about it. (Of course just to be clear, I write as a parent who is trying out a Functional Medicine approach for her child and not as an expert or health professional).

A BESPOKE medical approach

We are all used to wearing clothes which fit us well and pay a premium if we need to for clothes which are customized for our body shape and size. But when it comes to health, we are used to an approach which is just the opposite. It is a “one size fits all” approach!

This has worked well in the past when we were dealing with infectious diseases like chicken pox, measles, cholera, small pox and others which have been brought under control which much-needed antibiotics and antifungal medicines. But a lot of the medical issues that we are facing today are due to not only our genetic predisposition, environment but also our lifestyle choices (food habits, diet and exercise) and stress. Hence, most of the times we do not realise that a lot of our chronic medical problems (autoimmune disorders like rheumatoid arthritis, coeliac disease, Grave’ disease and others like migraines, digestion issues, allergies, psoriasis etc) cannot be wished away by just popping a pill.

We will need to look beyond pills to deal with most chronic conditions. Luckily for us, there is an entire stream of medicine which is geared to do just that.

What is Functional Medicine?

Functional Medicine is an approach which is different from the conventional way that we use to deal with any kind of illness currently. Conventional medicine is of course necessary for dealing with acute illnesses which require immediate intervention either through medication or through surgery. So one needs to be very clear whether the health issue is an acute illness or a chronic one. Also, while conventional medicine focuses on symptom relief, Functional Medicine addresses the root cause of a problem. It has a patient centric approach that tries to find the root cause of any illness or condition by looking at each patient differently based on his/her lifestyle choices, food and dietary habit, genetic and environmental factors and other psychological factors like stress which has a tremendous bearing on a person’s well-being.

Functional Medicine is also science based and combines conventional medicine with a holistic approach by adding diet, supplements and stress management techniques etc which are not usually used in conventional medicine treatments. What is also important that it uses scientific methods like laboratory testing and latest diagnostic techniques to find out the root cause of any illness. Functional Medicine thus provides tools for the patient and the practitioner to customise and design a health management programme for each individual which is geared up to create health and not just to banish illness.

Ayurveda- a holistic approach towards diseases

Here I would like to mention briefly about our traditional treatment philosophy which is also patient centric and holistic in its approach towards diseases. In India, we have a tradition of healthcare called Ayurveda which translated in English literally means the “science of Life”. It focuses on how to prevent illness and how to address the root cause if it happens and is one of the earliest holistic treatments known to man. In that sense Ayurveda has a lot in common with Functional Medicine. But with the progress of Western medicine it has taken a kind of backseat in India over the years.

(I have written about our experience with Ayurveda in my earlier post- https://eczema-anindianperspective.com/2014/08/25/our-tryst-with-ayurveda-and-our-first-eczema-support-group-meeting-in-mumbai/).

Ayurvedic treatments are based on the principles of wholeness and balance. That is why the mind, body, spirit, emotional balance of a person as well as diet, lifestyle, stress is considered to be as important for treatment if not more than the actual medicine. It emphasises on treating the cause and not just the symptoms and hence looks to preserve a person’s well being and not just treat him. Unfortunately, due to various reasons (which is beyond the scope of this blog) ayurveda has come to relegated as an “alternative” medicine. This was all the more so due to a revolution in the history of medicine brought about by the discovery of antibiotics in the 20th century which has saved countless lives. But today we face a very different challenge which may need to be tackled quite differently.

Chronic illness- a growing phenomenon

As we all know the use of antibiotics has helped saved millions of lives since its discovery and has even helped eradicate diseases like smallpox etc. This new era of medicine honed its skills in targeting a particular agent which caused an infectious disease and then evolved to treat a particular symptom caused by a disease. This is the current approach of medicine towards all illnesses. But while acute medical issues have been dealt with very well by conventional medicine, chronic and lifestyle related issues are not faring as well. And the incidence of chronic illnesses are increasing exponentially led by the USA and followed by other countries all around the world.

(Sources: http://www.who.int/dg/speeches/2011/global_forum_ncd_20110427/en/

http://www.cgdev.org/doc/expert%20pages/nugent/Nugent_Annals_article.pdf)

A chronic illness also does not go away on its own, indeed grows worse over time and usually has multiple causes. The medications usually only treat the symptoms which make recurring episodes a regular feature. This means leading a life visiting doctors, popping pills and putting up with many symptoms. This is even more problematic since ironically we are living longer lives than our previous generations.

Also a myth that has been associated with chronic diseases and developing countries like ours is that chronic diseases affect only the elderly and wealthy parts of a society and is prevalent primarily in developed countries. That notion no longer holds any truth. This problem is all the more compounded when you add in the economic costs associated with the growing burden of chronic noncommunicable diseases. We now not only have to deal with the rising healthcare costs associated with chronic illnesses over long periods of time, we also have to factor in the loss in income due to same.

In India, the incidence of  Type 2 diabetes is steadily reaching epic proportions especially in the urban areas. Autoimmune disorders like Rheumatoid Arthritis, eczema and others like heart diseases, migraines etc are also on the rise.

Some of the articles whose links are given below will give you some idea of the criticality of this situation globally and in India-

http://www.who.int/chp/chronic_disease_report/part1/en/

http://archive.oxha.org/initiatives/economics/chronic-disease-an-economic-perspective

Gut health and Functional Medicine

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Functional Medicine recognises that though the symptoms may be similar in two different individuals, the medical approach required to deal with them will usually be radically different. This is due to the fact that while the manifestations of the disease is similar in both individuals, the genetic makeup of both are different, environmental factors like exposure to toxins are different and their lifestyles will also be completely different.

In this post I am focussing on one major aspect of Functional Medicine which is being recognised as the root cause of most chronic conditions including autoimmune diseases. That aspect is our “gut health” (or lack of). The others include genetic predisposition, lifestyle and environmental factors concerning each individual.

We are slowly coming around to this very important fact that our microbiome (or the many thousands of types of bacteria and other microorganisms which reside in our gut or intestines) determines our health and causes many autoimmune and other disorders when compromised. We carry about 2 kilograms of these microbes in our gut consisting of roughly tens of trillions in numbers and a part of the microbiome is unique to each of us.

This intestinal mircoflora has various important functions such as

  • digestion and absorption of certain foods
  • aids in the production of some vitamins such as Vitamin B and K
  • it has a protective function in keeping toxins, allergens out and balancing  out the unfavourable microbes
  • forms a protective barrier as a part of our immune system

Our gut system becomes off-balance and our health suffers when there is too much of harmful, pathogenic microorganisms like bad bacteria, yeast and parasites and too less of the health promoting bacteria. As mentioned earlier, this leads to chronic illnesses which are far more serious than just indigestion and heartburn.

Our gut health can become adversely affected due to various reasons like

  • a high calorie, sugar laden, processed food, low fibre diet that promotes the wrong kind of microflora
  • high use of medications like antibiotics which disturb the balance between the good and the bad bacteria
  • undetected low grade food intolerance and allergies (gluten, eggs, dairy etc)
  • deficiencies in pancreatic enzymes leading to issues with digestion and absorption of foods
  • toxins like mold, chemicals, pollutants etc which affect the gut and thus the health adversely
  • and last but not the least stress

Another serious issue which can crop up due to poor gut health is intestinal permeability or leaky gut syndrome. The lining of the gut acts as a barrier by containing the undigested food, toxic wastes and harmful microbes and filtering out only the required nutrients after breaking down the food into vitamins and minerals. This incredibly useful gut immune system may develop tiny gaps in the intestinal wall and allow leakage of undigested food particles, microbes and metabolic wastes which the body would then recognise as foreign invaders. This is called the leaky gut syndrome and can cause one to become allergic to all kinds of foods since the immune system starts defending the body against what it perceives to be foreign invaders. The hyperactive immune system if left untreated over prolonged periods of time can create inflammation and may eventually manifest itself in the form of various chronic conditions. Depending on the symptoms the illness is then classified as digestive disorders like Irritable Bowel Syndrome; migraines, chronic fatigue, arthritis, eczema and other autoimmune conditions.

(Sources for further reading-

http://www.medicalnewstoday.com/articles/290747.php

http://www.ncbi.nlm.nih.gov/pubmed/22583600

http://www.medicalnewstoday.com/articles/285122.php)

How is Functional Medicine really useful?

Abstract word cloud for Gut flora with related tags and terms

Given this backdrop Functional Medicine is poised to play an important role. By customising medical care based on the individual and not the symptoms of the illness, Functional Medicine is concerned with the problems afflicting the various organs and systems inside the body. As mentioned earlier it our intestinal (or gut) health which determines which nutrients are absorbed by our bodies and which toxins, mircobes and irritants are expelled. If anything happens to disturb this balance and affect our gut health adversely, it affects our health in myriad ways. (I have briefly touched upon this topic in my earlier post- https://eczema-anindianperspective.com/2015/06/12/not-all-those-who-wander-are-lost-eczema-and-our-ongoing-journey/). Functional Medicine focuses on this very important aspect of our health by trying to heal the gut health first and foremost in tackling chronic illnesses and autoimmune conditions.

Some of the basic changes that we can make to heal our gut would be

  • eat whole unprocessed foods like vegetables, fruits, nuts seeds etc which are high in fibre, nutrients
  • limit intake of sugar and processed foods
  • cut out/limit foods which you are sensitive to (gluten, dairy, eggs, shellfish)
  • take help to increase healthy bacteria in the gut and repair the instestinal wall (if damaged)

Functional Medicine also advocates the 4 R programme which acts as a framework based upon which we can make changes to improve and repair our gut health.

1. Remove- remove the allergens ( gluten, dairy, eggs, shellfish etc), inflammatory foods like sugar, processed foods and other irritants like alcohol, tobacco etc

2. Replace- replace the good stuff which are essential for good gut health like digestive enzymes and of course whole, unprocessed plant based foods, low sugar diet

3. Reinoculate- this step is all about restoring the balance of good bacteria in the gut microflora.This is done by taking prebiotic and probiotic supplements (containing the benefical bifidobacteria and lactobacillus species).

4. Repair- the necessary ingredients have to be reintroduced for the gut to repair itself which includes supplements like zinc, omega 3 fatty acid and vitamins.

There are tests available for determining the gut health. I am not sure about the availability of these tests in India yet though there is a clinic in Kochi called Heal Wellness which claims to be the first IFM certified clinic in India. (I am also not aware of any further details other than that what they have provided on their website).

A few of these tests include intestinal permeability test through urine samples; nutritional evaluation tests which can determine nutritional deficiencies and hence help in supplementation and comprehensive stool tests to determine the microbiome health in the gut. There are Functional Medicine practitioners who are health professionals trained and certified by the Institute of Functional Medicine (IFM) who can help in determining which tests need to be carried out and the subsequent course of action.

The Institute of Functional Medicine is the main body for Functional Medicine and is based in Santa Fe, USA. It was cofounded by Dr Jeffrey Bland who is considered to be the father of Functional Medicine. He has also written several books on this subject and if you want to know more about chronic illnesses and why they happen; the role of Functional Medicine etc you can read his book ” The Disease Delusion“.

(You can read more about IFM here – https://www.functionalmedicine.org/AboutFM/History/)

Physician- heal thyself!

There are some well-known Functional Medicine practitioners who though trained initially in conventional medicine are now following Functional Medicine principles in their work. Some of them had a taste of Functional Medicine when they suffered from their own health issues. Where conventional medicine failed them, Functional Medicine was able to control and even reverse the chronic condition in one case. Now they are all following Functional Medicine approach in treating themselves and their patients. You can read about them here-

Dr Mark Hyman (https://www.functionalmedicine.org/AboutFM/ourteam/faculty/bios/hyman/)

Dr Robert Hedaya (https://www.functionalmedicine.org/AboutFM/ourteam/faculty/bios/Hedaya/)

Dr Gerard Mullin at John Hopkins Hospital (http://thefoodmd.com/about/)

Dr David Perlmutter (http://www.drperlmutter.com/)

Dr Mark Houston (https://www.functionalmedicine.org/AboutFM/ourteam/faculty/bios/Houston/)

Dr Amy Myers (http://www.amymyersmd.com/2013/01/heal-your-gut-heal-yourself/)

Dr Terry Wahls (http://terrywahls.com/about/about-terry-wahls/)

Our health in our hands

Fruits And Vegetables Diet Word

Our health is determined by a myriad factors but the basic ones are our diet; lifestyle; exercise and movement levels; stress related factors; our environment; personal relationships and our relationships within the community.

Also, my experience of dealing with my daughter’s severe eczema over the past few years has taught me that we need to take some responsibility for our own health instead of leaving it completely to our doctors. We also need to take care of our health not just when we fall ill but much much before.

That means taking care of our bodies and treating it as a friend rather than an adversary that needs to be either tamed (through various fad diets) and/or ignored (either intentionally or unintentionally) till such time an illness crops up. (Of course one can always fall ill even after taking adequate care but then like much else in life there are no guarantees here only possibilities) I would rather try to explore all the possibilities that life has to offer rather than have regrets due to a lack of effort, wouldn’t you?

The good news is that today we have access to information, knowledge and the experiences shared by other people on their own journey from sickness to health that we can all learn from. We can thus work along with our health professionals and use their expertise and knowledge to improve and maintain our own health. An example of a person coming to this realisation the hard way and which proved to be a major turning point in his life is the top tennis player in the world, Novak Djokovic. You can read about his story in the book “Serve to Win”. One should however keep in mind that each of us is unique and what works for one person will not necessarily work for another. You will have to patiently find out what works for you and your loved ones.

“Take care of your body; it’s the only place you have to live”

Take Care Of Your Body Quote

I started writing this post planning to simply introduce the Functional Medicine approach to dealing with chronic illnesses like eczema, diabetes, migraines etc based on my understanding. But I realised that I also needed to include a detailed background given the increasing incidence of these illnesses in our lifetime. I hope I have been able to share a bit of what I have understood about this issue that you may or may not have been aware of.

I started on this quest because of and for my daughter who suffers from severe eczema and which is being managed through strong immunosuppressive medications. My family and I have reached this stage through a lot of trial and error but always with the guidance of our doctors who have been with us every step of the way. We have already seen some results with the changes we have made in our daughter’s diet but we still have some way to go. We will be starting treatment based on Functional Medicine principles soon for her with the help of an IFM certified practitioner. We are taking an informed decision based on studies backed by science and evidence and which has helped so many others like her to cope with various chronic illnesses. Even if we can simply heal her gut to begin with will itself be a minor victory.

I share all this with you so that it may encourage you to find out a bit more for yourself if you need to. We often do not realise how much more can be done to improve the quality of our lives if we really wish to. As one wise person put it very simply, we have only one life and one body. Our health depends on what we do with it.

You are what you eat (eczema and food)

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In my last post I had written briefly about the Eczema diet I had started for my daughter in October 2014. It is almost 6 months now and we have had some time to get used to her new diet. I have become very familiar with new foods (for me) like Spelt flour, quinoa, apple cider vinegar, Carob powder (alternative to cocoa) and have become well acquainted with foods like Sorghum (jowar), soya milk and beans, sweet potato, beetroot amongst others. More importantly, we have seen a gradual but definite improvement in her eczema under the combined influence of her immunosuppressive medication (Methotrexate) and her diet.

This is the first time in 3 years that she played a bit of Holi (a festival of colours in India) this year with safe, organic colours and it was delightful to see her so happy to take part in an activity which others can take for granted. There is one other thing that I want to point out in this regard. There have been a few of mild flare ups in the last 6 months- this has been partly due to introduction to new foods in her diet, sweating etc. But what stands out is the fact that usually tweaking the diet a bit for a short while helps to calm the flare up without the need for any additional medication like topical steroids etc every time. Now in fact, after a long time, Aiyana’s eczema is only on her neck and ankles and not all over the body. Her eczema is still a work in progress with a long way to go yet but each small step forward is a cause for celebration for all of us.

You are what you eat (so don’t be fast, easy, cheap or fake)

real food word cloud

Even though I am not a certified nutritionist or an expert and my family’s journey to control eczema through diet has just started, I want to share with you what I have learned so far. I hope that my story might encourage you to find out more about your own diet, lifestyle and its impact on your health and make changes if required. What I love most about using this path to treat my daughter’s eczema is that this is in my control  since I get to decide and control the quality of ingredients and nutrients which enter our systems. This is very different from giving medicines and trying out other treatments where there are various (and sometimes harsh) side effects, none of which are under our control.

One of the key learning for me this past couple of years has been the realisation that the foods that we eat have a far greater impact on our health and wellbeing than I could have ever imagined. I always knew that food gave us energy and was a necessary part of our lives but never knew or realised the critical role that it plays as far as our health is concerned. There is obviously no only one right diet for everyone. And we are talking about real food here and not which comes from a package. Our food habits have changed a lot in the past few generations and we have moved away quite a bit from natural, unprocessed and simple foods. In India though, the emphasis is still on fresh home-made foods for most of us on a daily basis. But packaged, processed, sugar laden foods have become a big part of urban Indian lifestyle as today and we have an increasing incidence of  lifestyle diseases like childhood obesity, type 2 diabetes amongst others.

Simply put, the food that we eat plays a vastly important role and has both negative and positive impact on the body depending on what foods we are consuming. Also, in addition to food there are several other important factors which affect our health. These are namely, the toxins and chemicals we are exposed to on a daily basis, how we live our lives, how much we exercise and what kind of support system we have in terms of family and friends. Of course, in spite of taking all precautions and leading a very healthy life one can still fall ill due to various reasons beyond our control.

Life gives us no guarantees of course! But isn’t it still better to make the most of what we have till such time we can instead of taking our health for granted?

One word of caution here though. My daughter suffered from a life threatening infection due to a major side effect of the drug azathioprine which was meant to control her eczema. But it was also antibiotics and the timely critical medical care which saved her life. So one needs to take a well thought out and balanced approach when deciding on medical care. There are times when one has to take whatever measures like surgery, treatments and medications that are required to fight an illness or a health situation. Other times if there is a chronic illness or condition which just doesn’t improve with medicines and surgery alone, one can look at a combination of holistic approach and medications. At all times one has to take a decision about the relevant and proper medical care depending on the circumstances. The type and combination of medical care and a well balanced diet will differ from individual to individual.

(Sources and further reading: http://www.ncbi.nlm.nih.gov/pubmed/15639678

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028965/

http://www.ncbi.nlm.nih.gov/pubmed/11229668)

Our relationship with food

Our relationship with food can be a bit tricky at times. Sometimes we use it as a crutch to help us through difficult times; other times it forms a part of our celebration apart from simply filling our stomach. We may also have strong feelings associated with it depending on our relationship with food. However, like many others I was not aware of the healing power that food has to offer. Simply put, we maybe able to control and in some cases reverse the effect of various disorders (especially chronic conditions) by making the necessary dietary changes. Hence, the food that we eat is a critical part of our healing process and we need to understand and respect that.

I am learning more about it everyday and I am slowly but steadily incorporating it into my entire family’s diet. However, diet alone may not have the desired impact for those with medical conditions since a combination of other factors like environmental toxins, stress, a leaky gut and infections usually affect the desired results.

There are various reasons why we do not hear about our diet as an part of our healing process (in addition to life saving medications and surgery whenever required) and this has been very well captured by Dr Terry Wahls (clinical professor of Medicine at the University of Iowa) in the article below-

http://www.healthy-holistic-living.com/doctor-didnt-learn-medical-school.html

Stories that inspire me

inspiration word in metal type

Dr Terry Wahls is just one of many who have successfully controlled (and in her case even reversed) their medical condition. She used a combination of dietary changes, excercise, supplements, electrical stimulation, meditation (for stress management) to successfully stop and also reverse the rapid progress of Multiple sclerosis (a neurodegenerative disease where the immune system attacks the Central Nervous system and has a whole host of symptoms which differ from individual to individual). The treatment that she followed is based on the principles of Functional Medicine.

She has published the details of her treatment and recovery in the science magazine Neuroscience 2011 and the link to the abstract is as given below-

http://www.abstractsonline.com/Plan/ViewAbstract.aspx?mID=2773&sKey=09785855-9734-496b-b682-d5b790e3eb46&cKey=4f661b9f-223e-44e7-89cd-c464d1222d6d&mKey=%7b8334BE29-8911-4991-8C31-32B32DD5E6C8%7d

You can also read about her at-
http://terrywahls.com/about/about-terry-wahls/

Another physician, Dr Amy Myers, has had a similar experience with her struggle with an autoimmune disorder involving the thyroid gland called Grave’s disease and where conventional medicine could not provide any solution. Dr Myers unsuccessfully underwent ablation surgery (permanently destroying the thyroid gland) before using Functional Medicine successfully to control her condition and has helped many others do the same without resorting to ablation/surgery unless absolutely required.

You can read her story here-

http://www.amymyersmd.com/2014/02/hyperthyroidism/

(Functional Medicine is a customised approach to medicine which differs from person to person and imbibes the best of science, research and innovative tools to treat the patient. It is completely patient focussed and takes into account the genetic factors, environmental and lifestyle influences of each individual before starting any treatment and thus does not treat the symptoms of a disease only. It strives to combine the best of conventional medicine and integrative medicine like nutrition, exercise, supplements etc)

Another person I would like to mention in this regard is another physician, Dr Naomi Rachel Yemen. She follows a completely different path to deal with her severe chronic condition called Crohn’s disease. She is a pediatrician by profession and is currently a Clinical Professor at the University of California for Medicine. However, the way she has dealt with her severe autoimmune disorder, Crohn’s disease, from 15 years of age for more than 50 years is what I wanted to share with you. Though her doctors had given her a life expectancy of only 40 years she has embraced life and has lived through a coma, eight surgeries, intensive therapy with powerful drugs and surgical removal of her large intestine. She has used a holistic mind/body approach in combination with other medications and surgeries in order to not only survive but also to deal with her intense suffering and chronic pain. In the process she has cofounded one of the first cancer support groups in the US and helped countless others who were otherwise medically beyond help. Over the years of dealing with her patients she has come believe in the power of healing from within often when there is no cure as in her own case. She has shared her thoughts in the link given below-

http://www.rachelremen.com/some-thoughts-on-healing/

You can read more about her life and the books she has written on her website-

http://www.rachelremen.com/about/

There are countless other such cases even though I have highlighted only a few examples in this article. What is common in all these cases and countless others is that it was ultimately something beyond conventional medicine which made all the difference to the quality of life even when there is no cure. One has to find what combination works best.

The long and winding road

cross road on hillside meadow in mountain at sunset

My daughter has been dealing with her condition for some time now and it is hard and a lot for an eight year old to deal with at times. However, we face the good days and the not so good days as a family and it helps her to get through the rough patches. I started writing this post thinking I would be focusing solely on her diet but ended up sharing with you much more. But I felt that it was important to tell you about the people who inspire me on this journey.

In this post I decided to share with you a few of those genuine and real life stories about people which have shown me that none of us are ever the only ones with these kind of problems. There are many others who have such serious, chronic medical conditions and deal with them in such healthy and non conventional ways. It is definitely worth knowing more about them and then finding out what works best for you. In my next post later this month I will write in more details about the actual diet that I am following for my daughter and its impact so far.

I also realise that while we have seen some improvement in her skin condition with the dietary changes and the medication she is currently on, it is not enough. I plan to take the help of a Functional Medicine practitioner and I am currently in the process of getting in touch with one in London. (I do not know much about the Functional Medicine practice in India and would need to find out more about it). I plan to get the requisite tests done for my daughter for determining the condition of her gut health through bacterial dysbiosis test (test for small intestine bacterial overgrowth), yeast infection, food intolerance test etc depending on the recommendations.

Gut health is considered to be of immense importance in Functional Medicine and is considered to be the cause of many allergies, arthritis, autoimmune disorders, chronic fatigue amongst a host of other medical conditions. Hence a good digestive system is very important for a healthy body and it may be severely or mildly but adversely impacted by various factors like stress, diet, overuse of medications, low-grade chronic infections like yeast, bacteria etc. There are tests to determine the gut health which would help me to focus on the areas that would need special attention for restoring the gut health for my daughter instead of trying out everything all at once. This is very important in order to remove the inflammatory foods, replace them with foods and ingredients required for restoring gut health, increase good bacteria in the system and repair the system by adding nutrients like Omega 3 etc.

The last time when we dealt with an experienced and well-known pediatric dermatologist in London, he recommended a course of treatment after carrying out the requisite tests which had disastrous consequences (I have captured this in my earlier blog post- https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/). This time around the treatment is based primarily on food and other natural ingredients which are in my control and have very limited side effects (if at all). Also, the past 6 months of following a specific and restricted diet (wheat free, dairy free , egg free amongst others) has given me the knowledge and confidence to handle major changes in the way we eat.

(Sources and further reading about gut health: http://www.ncbi.nlm.nih.gov/pubmed/15790845

http://www.ncbi.nlm.nih.gov/pubmed/14522724)

It is not an easy journey for us as a family with restricted travel and social outings due to the dietary restrictions. But I try to make up for it at home in various ways with the help of my husband, other family members and friends. I now know that there are so many others like us who are on similar journeys of healing themselves with food and healthy lifestyles and I am truly inspired by them. We are in this together as a family and that gives each of us a lot of strength.

As a wise person once said ” Life is like a journey, so lets enjoy the ride!”

 

Our new eczema diet and a heart full of gratitude

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It has been some time since I have put up a post. There have been a couple of developments at my end due to which I have been a bit tied up. The first and the most important one is that the combination of the new immunosuppressive medication, Methotrexate, and her new diet seem to be working for my daughter. I will be writing more on this particular diet later in this post.

The second one is that the support group for eczema that I started a few months back has been slowly gathering steam at a pace that I am comfortable with.

And last but not the least, I also want to express my gratitude and share with you this time the amazing team of doctors in Mumbai behind Aiyana’s medical treatment over the years all of whom have helped us in their own ways to deal with her severe eczema.

Diet and its impact on various disorders

diet

I had been reading about how diet affects one’s body in various ways and is especially important when dealing with autoimmune disorders and chronic conditions like eczema. Doctors do not really recommend any dietary changes unless allergy tests prove to be positive for various foods. However, I found that there more than a few genuine cases where people suffering from severe autoimmune and other disorders like Hashimoto, Lupus, Postural Tachycardia Syndrome, Irritable Bowel Syndrome as well as eczema have found relief from the symptoms due to dietary changes and have managed to go off medication completely over time.

It took me more than 6 months to come to this point of view after reading about the life altering experiences of these people and then figure out a diet which I was willing to try out on my daughter. The life stories of some of the people who influenced my decision to try out diet as an option for my daughter are captured in their blogs whose links are as given below-

http://deliciouslyella.com/philosophy/about/– This blog is by Ella who has Postural Tachycardia Syndrome, a relatively rare and painful illness with no known cure and she managed to go off her medications completely after about 18 months of changing her diet

http://www.naturallysassy.co.uk/about– This blog is by Saskia, a ballet dancer with chronic eczema since childhood and who has completely gotten rid of her eczema by altering her diet

http://www.choosingraw.com/about/– This blog is by Gena who has battled with anorexia, Irritable Bowel Syndrome and who now successfully uses a mix of raw and cooked vegan diet to keep herself healthy

http://www.amymyersmd.com/about/my-story/– The last link belongs to a website by Dr Amy Myers, a doctor of functional medicine suffering from Hashimoto’s ( a chronic and painful condition of the thyroid gland with no known cure) who has brought her severe thyroid condition under control after changing her diet/nutrition and life through meditation, yoga, supplements amongst others.

(Functional medicine integrates traditional Western medical practices with what is sometimes considered “alternative” or “integrative” medicine, creating a focus on prevention through nutrition, diet, and exercise; use of the latest laboratory testing and other diagnostic techniques; and prescribed combinations of drugs and/or botanical medicines, supplements, therapeutic diets, detoxification programs, or stress-management techniques.)

Source: https://www.functionalmedicine.org/

The Eczema Diet

Eczema-Diet-2nd-Ed-Front-Cover-192x300

In my post https://eczema-anindianperspective.com/2014/09/23/products-and-resources-which-help-to-manage-eczema/, I had very briefly mentioned that I was planning to start my daughter on a diet for eczema based on the book “The Eczema Diet” by the Australian nutritionist, Ms Karen Fischer. Her daughter had severe eczema as well when she was a 2-year-old and with changes in her diet, Karen managed to control the eczema successfully. She has since written this book based on her own experience with her daughter and the feedback over the years from her patients who have successfully brought their eczema under control using this diet.

This diet is practical and comprehensive with information on products and backed by research; it has menus and recipes for babies, children and adults. It also has non diet information like skin care products and general recommendations for eczema. The objective of this diet is to temporarily take out all the eczema unfriendly foods from the diet and add all foods which are highly nutritious and eczema safe.

There are 2 stages to this diet- Stage 1 and Stage 2 .

Stage 1 is primarily to heal the gut by avoiding foods with any kind of artificial chemicals and limiting naturally occurring eczema unfriendly chemicals (like MSG or salicylates) ; allergens (eggs, wheat or dairy products); anti nutrients (phytic acid, sugar, processed foods) and acid forming and other foods which increase itchiness (oranges, corn, tomato, dairy, grapes, dried fruits). This diet thus helps restore the acid alkaline balance in the body.

Stage 2 is an extension of the first stage where the food groups are gradually expanded by adding back different food groups in moderation ( no processed foods, artificial colourings, preservatives etc) depending on the improvement in the skin condition. The diet also has recommendations on supplements like vitamins, probiotic, glycine, flaxseed (Omega 3) amongst others which are very important in helping the body cope with eczema since the child might not be consuming adequate quantities of the same from food.

I started this diet for my daughter after going through it thoroughly and arranging for most of the eczema safe ingredients as there are quite a few changes in ingredients that we usually use at home. Infact, it took me almost a month to assimilate all the information, answer the different questionnaires and make notes and list down the essential foods and recipes as a part of my preparation before starting this diet.  It’s been about 2 months since I have started this diet for my daughter.

Since it is pretty restrictive in the first stage, I took my time to prepare my daughter mentally for what was to come in the following months by telling her about the diet. I also made her read excerpts from the book about other children who have benefited from this diet and have seen their eczema either disappear almost completely or finally come under control. Only when I was sure that she was ready for this change and that I had prepared adequately for this diet did I finally start the diet for her.

The recipes and menu

recipes

Over the past couple of months I have tried out various recipes from this book as well as developed and modified some recipes from this book using eczema safe ingredients. This is to ensure that Aiyana not only followed this diet completely with no exceptions but also had a wide variety of options to keep her from feeling deprived of all the store-bought and other foods that we are all so used to having nowadays. The good part about doing all this apart from the health benefits for my daughter is that my entire family now has much less processed foods, negligible amount of junk foods, healthier organic and fresh foods, homemade preparations of bakery and other  foods with no sugar and preservatives.

This has not been easy especially since I have had to cut out sugar, dairy, wheat, eggs and all processed foods, all spices ( apart from garlic and salt) out of her diet and give her a  very limited variety of fruits and vegetables. These last couple of months I have extremely been busy with this diet trying out the book’s recipes and new recipes almost on a daily basis since I have had to modify some of them to suit her needs and our Indian palette. This has been made more difficult since the recipes in the book are for meant to suit an European palette while we are used to our Indian spices and foods. What has helped me is my past experience with gluten-free cooking for my daughter in 2012 ( I have covered my experience in the post- “Eczema and diet” ) and my determination to ensure that I find a way to manage my daughter’s health in a more natural way in the long run.

The book can now be purchased both as a paperback and kindle version online at amazon.in.

When there’s a will there is a way

 inspire-31What encourages me is that Aiyana’s skin condition has improved in the last couple of months. Here I should also add that we had to start her new immunosuppressive medication around the same time as the diet and that the new medicine also takes 3 to 4 weeks to show results. But with my experience of giving her the third immunosuppressive medication (Cyclsosporine, Azathioprine, Methotrexate) I can say with conviction that the only medicine which has truly worked for her and made her skin completely smooth and normal all over has been oral steroid in high doses. The other medications have either just about helped keep her eczema under control (Cyclosporine) or brought about bone marrow suppression (Azathioprine); I have covered the effects of Azathioprine and our traumatic experience in my earlier post “…the tough get going (Part 2)“.

Hence, I am really happy to see that after starting her on this diet her face is totally clear of any rashes and has finally got back that healthy glow that had disappeared under the effect of all the strong medicines being given to her. I am willing to continue the hard work required to carry on with this diet and keep her motivated to follow the same for the next few months at least. I will keep you posted on further developments about my daughter’s skin condition in relation to this diet in my future posts.

 A heart full of gratitude

thank you

As the year comes to an end, I stop to count my blessings for all the good things in my life and my heart is filled with gratitude for all those doctors who have been with us in my family’s difficult journey in the past few years. In this post I would like to thank the amazing set of doctors behind Aiyana in her fight against eczema. I have briefly mentioned them in my earlier posts as well but have never mentioned their names which I do now with their consent.

 

 

Dr Shashi Merchant is Aiyana’s pediatrician from Breach Candy Hospital, Mumbai, and has known her since birth and held her as a newborn baby. She has been a pillar of strength and is unwavering in her support and care for my daughter. She gave us hope when we needed it the most in the darkest of moments when Aiyana was fighting for her life in the hospital last year. We are all lucky to have had her on our side in this journey.

Dr Amrita Talwar is Aiyana’s main dermatologist for the past 4 to 5 years now and has done much more and beyond than required as her role as a doctor. Without her help and guidance about the myriad aspects of dealing with eczema (including the essential but non medical ones) life would have been significantly more difficult for us. I have her to thank for encouraging me to write about our experience and starting this blog and for pushing me and helping me to start the Eczema Support Group.

Dr Manish Shah is a leading senior pediatric dermatologist and is the dermatologist whom we consult regarding her immunosuppressive medications and narrow band UVB treatment. He gives us advice when required and gives us much-needed guidance about giving these strong medications as well as dealing with and minimising the harsh side effects. We are very grateful to have him as Aiyana’s consultant dermatologist.

Dr Mahesh Balsekar is another well-known pediatrician in South Mumbai with Breach Candy Hospital. He is the one who diagnosed and admitted Aiyana to the hospital in time last year (Dr Merchant was on holiday at that time) which ultimately saved her life. Dr Balsekar thus gave her and the doctors at Breach Candy Hospital a chance of fighting her life threatening infection. My heart swells with gratitude for Dr Balsekar for keeping our family intact and saving my daughter’s life.

We are also grateful to the entire pediatric division of Breach Candy Hospital, haemotolgists Dr Antia and Dr Agarwal and the entire support staff at the hospital for playing a very important role in our daughter’s stay at the hospital last year.

A new year, a new beginning

new year

And so another year ends and a new one is about to begin soon. May the new year be filled with joy, laughter and good health. But may you also find the strength to overcome whatever obstacles lie in your path and remember to enjoy every precious moment with your friends and family.

From my family to yours–

A Happy 2015! 

 

Eczema Support Group in Mumbai- a beginning

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There have been a few developments at my end. The first one is that I am in the process of setting up a support group for the families of children suffering from moderate to severe eczema in Mumbai. Support groups play a very important role by not only alleviating the pain and suffering of patients of various medical conditions across the world but also by providing emotional support to their care givers (in this case parents).

I know firsthand what the impact of having a child with severe eczema is on a family who is dealing with this chronic condition on a daily basis. The parents (usually the mother in most cases) deal with the emotional and physical stress of managing their child’s eczema apart from the rigours of administering medicines and the long drawn (usually) moisturising and bathing routine of a child with eczema. Also, a lot of times the doctors are not in a position to give as much time as is required by some parents to understand properly how to manage their child’s daily moisturising, bathing routine which is critical in these cases and also to explain the other lifestyle and other changes required to keep eczema under control.

The objective of the support group is to thus fill this gap and make sure the parents are well informed about the same. Infact, parents themselves are able to come up with various suggestions, information at times of what has worked in managing and improving their child’s eczema which can benefit another child.

Also, sometimes it just helps to talk to someone else who is going through the same rigours of dealing with their child’s eczema as only someone who is in a similar situation is truly able to understand what the other is really going through.

The first meeting has been tentatively scheduled as per the details given below-
Planet Godrej
30 K K Marg,
Close to saatrasta
Mahalaxmi, Mumbai 400011
Date: 28th July, Monday
Time: 10 am

Incase you are interested in attending the same or any of our future meetings, please do get in touch with me. My email id is- eczemaanindianperspective@gmail.com.

The second development is a talk I had given at a forum which was an unique patient oriented meeting organised by IADVL SIG Pediatric Dermatology (Indian Association of Dermatologists, Venereologists and Leprologists) at Wadia Hospital, Parel on 22nd June 2014. The CASE meeting was attended by around 35 persons that included practising and teaching dermatologists, dermatology and pediatrics residents, and caregivers of Atopic Dermatitis patients.

My part in the same was on the topic “Our life with eczema- a family perspective” and captured our experience of dealing with our daughter’s severe eczema over the past few years.

The link to my talk is on youtube as given below-

Our life with eczema: A family perspective-  https://www.youtube.com/watch?v=sF17Cj1raAc

There you will also find the other videos on the talks given by the other doctors and the parent of another child with Atopic Dermatitis on various topics like “Eczema? Why me? How do I cope? – Dr. Manish K. Shah”; Coping with eczema everyday– Dr. Rajesh Jadhav; Eczema treatment highs and lows- Dr. Rui Fernandez; Infections and eczema- Dr. Manjyot Gautam; Wet wraps for eczema- Dr. Amrita Talwar; Overcoming eczema: It’s not impossible- Mrs Unnikrishnan. 

My endeavour is to increase awareness about this condition in my country as well as help other children and their families deal with Atopic Dermatitis. The formation of the support group, my blog and sharing my family’s experience in relevant forums are baby steps towards that goal.

Given below are some words that I keep close to my heart and which says it all-

“Some of the most comforting words in the universe are “me too.” That moment when you find out that your struggle is also someone else’s struggle and that you’re not alone fighting that same battle.”

Our journey continues….( a look at our ancient way of healing- Ayurveda and mindfulness meditation)

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I am back! I am back with more stories to tell, experiences to share and hopefully some tidbits of information which might help another parent to cope with their child’s eczema along the way. Only a parent who is a first hand witness to their child’ s suffering due to this skin condition ( and any other such chronic medical conditions)  will be able to empathise with another family’s pain, exhaustion and some times negative thoughts that can arise out of dealing with sleeplessness, social and psychological impact that eczema can have on on a child. And that is what keeps me going to share what works for us ( most of the time) and what products, methods etc help in dealing with my daughter’s eczema.

Our introduction to Ayurveda

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I had recently taken my daughter, Aiyana to an ayurvedic hospital ( IAIM Healthcare centre – an Institute of Ayurveda or Integrative Medicine) in the outskirts of Bangalore (the capital city in the southern state of Karnataka). I was not looking for a quick fix solution or a cure to her eczema, but just exploring other traditional methods of Indian medicine which go back a very long way and seeks to heal from within. My hope is to see if our traditional medicine has something to offer to help my daughter to control her eczema in the long run without the help of other powerful medications like she is on currently.

A rigorous process

At IAIM Healthcare Centre, she was first put on an increasing dose of medicated ghee ( it is a type of clarified butter made by simmering the butter made from the milk so that it gets caramelised which gives it the unique taste and aroma) along with a severely restricted diet. This was done to remove all the toxins from her body prior to starting medications, since Ayurveda considers ghee to be satvik ( in the mode of goodness)  and is the main ingredient in many traditional Ayurvedic medicines. She was given this for 4 days till her body was saturated with ghee (as they could make out from her stools). All this while she was ONLY allowed a diet of fruits (non citrus) and plain khichdi (which is a preparation made from rice and pulses); she was also not allowed to go out anywhere but stay in one place in a warm environment to facilitate this process. The 5th day was the day of purging and she was given a laxative in order to prepare her for the medicines to follow from the next day. All this while she was given a daily medicinal ghee massage and a warm bath mixed with herbs.

An interesting change

One very interesting change that took place during this time was that her skin condition was the softest and the smoothest I had seen in some time. While Aiyana’s immunosuppressive medication continued at the same level with no change, her skin condition improved dramatically with all the diet restrictions (and no other medicines). However, once the medicines started the next day and her diet restrictions eased up, her skin condition slowly came back to normal in the next few weeks. I guess her extremely restrictive diet played a key role in improving her skin condition during the first week at the ayurvedic hsopital (even though it is simply not possible to continue with this kind of diet for more than a few days).

However, Ayurvedic medication demands that one follows a restricted diet since certain food types do not go well with the ayurvedic medicines. Hence, Aiyana has been asked to stay away from fermented products (inc yeast based bakery items) like yogurt, dosa, idli etc; all citrus fruits and vegetables like oranges, lemons, tomatoes; root vegetables like cauliflower, potatoes; other processed and refined foods like white rice and refined sugar; leafy green vegetables. She has also been advised to have everything cooked in ghee. As you can make out it IS a difficult way of life to follow since it does not involve only medication but also a whole lot of changes in one’s diet. In any case, she has been very cooperative and we have been able to follow most of the food restrictions so far.

Our goal

The goal of Ayurvedic medicines according to Dr Gangadharan (who is the Head of the Dept. and treating my daughter) was to strengthen her immune system from within so that over time her body was naturally able to bring the severity of her eczema within a manageable level. I will keep you posted on her progress and any changes as far as Ayurveda is concerned. We have been back in Mumbai for 3 weeks now and her skin condition has come back to normal. I will however have to continue with her Ayurvedic medication for some more time if I want to give it a chance to work. I will also be taking her for a follow-up to IAIM Healthcare Centre next month in order to assess her progress, change in medication etc.

The good, the bad and the ugly

It is always a case of a mix of good days and bad days for her even with her medications. And since there are various triggers to her flare ups, it is nearly impossible to pin point and avoid the the same completely. This leads to a  yoyo like swing in her moods making it difficult for her and all of us especially on those bad (and ugly) days and nights with her itching and inability to sleep. I have already touched upon this psychological impact (which can lead to lack of self-confidence and social skills) and I have described how I have been dealing with it in my daughter’s case in my post Beauty is not just “skin” deep- helping your child cope with eczema.

Let them sleep, for when they wake…they will move mountains

We have been grappling with sleepless nights ever since she was 1-year-old (even though her condition was mild at that time) and when you add to that the mild eczema that my 4-year-old son has as well, you can see that it leads to a lot of sleepless nights and fatigue for the entire family. It is an aspect of eczema ( and Atopic Dermatitis in particular since it affects children) that severely impacts a child’s well-being leading to lack of concentration in school and a lack of self-confidence amongst other problems. It also one issue the entire family (which has children suffering from Atopic Dermatitis) will have faced some time or the other. As a result I have been searching for a way to improve our quality of sleep (without further use of medicines) by reducing stress levels and learning relaxation techniques.

Mindfulness Meditation

mindfulness

To this end I have been reading about a form of stress reduction technique called ” Mindfulness Based Stress Reduction”  (MBSR) program developed by Dr. Jon Kabat-Zinn at the University of Massachusetts Medical Center. It is meant to work by making one more “grounded” or “aware” of the present moment and simply means paying attention in a particular way: “on purpose, in the present moment, and nonjudgmentally” as described by Dr Kabat- Zinn. In this post, I will be just touching upon this topic since we have just started following the same ourselves.

My goal in trying to incorporate it in our daily life is very simple – to help my daughter reduce her stress and frustration levels and hopefully cope with her medical condition better with time and practice. The good thing is that one does not have to be a Buddhist to practice this though it has its roots in Buddhism, Taoism and yoga. Mindfulness is the art of conscious living so that you live a life being who you are already and not try and be someone that you are not. Hence, one’s religious beliefs does not interfere with this practice.

Meditation and coping

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I am using the book and CD combination- “Planting Seeds: Practicing Mindfulness with Children“ which is based on Thich Nhat Hanh’s (a Zen Buddhist monk) thirty years of teaching mindfulness and compassion. They are designed to help relieve stress, increase concentration, nourish gratitude and confidence, deal with difficult emotions and improve communication.

While we have just started practising this, Aiyana has been enjoying our daily sessions of “deep relaxation” before bedtime since it is helping to calm her (and me) down quite a bit and relax. While it is too early to comment on the results of practising this, I can say that it has made a slight improvement in her sleep quality. And anytime that she wakes up feeling itchy, the music is soothing enough to lull her back to sleep most of the times. I am also planning to use another well-known book for practising mindfulness meditation with children – “Peaceful Piggy Meditation” by Kerry Lee Maclean for the same purpose.

Be happy for this moment, this moment is your life

And in the end, this is what matters. How well we lived our life, how well we loved, how we counted our blessings along the way; how we learned to accept the things we simply cannot change and faced our most difficult moments. This is the lesson I strive to teach my children, one lesson that I am myself learning every day of my life.

 

 

Azathioprine and Cyclosporin ( an overview of two immunosuppressive medicines used to control my daughter’s eczema) from a parent’s point of view

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I seem to be putting up a post quite infrequently off late but I hope to change that soon. In my defence I can only say that I have been enjoying myself too much and was quite tied up with my brother’s wedding late last month. It went off very smoothly and now the happy couple are spending quality time in Thailand.

Those of you who follow my blog and have read my earlier posts know what happened with my daughter due to the drug Azathioprine which was given to control her otherwise very severe eczema ( I have covered this in my post ….the tough get going Part II). I am pretty sure that other parents like me who have had to either put their child on this kind of immunosuppressive drug or have had to contemplate giving it go through the kind of jitters that I do from time to time.

I am very well aware about the reason and benefit of giving this medicine to my child without which leading a normal life for her would be almost impossible given the severity of her eczema at this point in time. But it does not stop me from thinking of all the possible side effects in the process of controlling her eczema especially given the life threatening consequences of giving her azathioprine last year. It is like having Hobson’s choice in this matter which means there is really no choice at all. I am sharing our experience with you in the hope that it may help you decide what is the best line of treatment for your child with the doctor’s support and bring a smile to your child’s face by making living with severe eczema bearable.

Hobson’s choice

IMG_1262By the time we gave Aiyana azathioprine last summer, we had exhausted all the other possibilities of various triggers like allergens, environmental causes like hot or cold temperatures, irritants like detergents amongst others. We also had an intensive moisturizing and bathing regimen to control her eczema but without much success. We had tried out all levels of topical cortisteroids and immunomdulators, wet wrapping therapies, phototherapy and oral steroids all of which are usually enough to manage mild-to-moderate atopic dermatitis. Although some mild cases of atopic dermatitis can be managed with emollients (creams, lotions and ointments) alone, there are some people who might require treatment with either topical corticosteroids or immunomodulators. When all these medicines and other measures to minimize environmental influences (elimination of allergens, dust mites, irritants like detergents and heat, perspiration and dry climates) fail, systemic options like oral steroids (prednisolone) and non-steroidal immunosuppressant agent such as azathioprine, methotrexate, ciclosporin or mycophenolate are often considered.

Azathioprine and cyclosporin- 2 different types of immunosppressant drugs

In Aiyana’s case azathioprine was prescribed by a leading pediatric dermatologist in London after doing a battery of tests including the enzyme test called TPMT (thiopurine methyltransferase). This enzyme plays a critical role in the chemical breakdown of azathioprine that is, in the way the body gets rid of this drug.  If a person is TPMT deficient, the effect of a particular dose of azathioprine will be exaggerated, and it could therefore become toxic to the bone marrow and hence the TPMT test is mandatory before giving this drug. Azathioprine has been in existence since the 1960s and was initially developed to prevent organ rejection and has been used for many years in the treatment of severe eczema. It is an immunosuppresant drug that is also known as antimetabolite. It hinders the growth of lymphocytes (a type of white blood cell) which are involved in inflammation associated with eczema. Azathioprine is given by mouth, usually once daily, and most often in the form of tablets of 25mg and 50mg.  It is also available in the liquid and allows more precise dosing for young children.

Cyclopsorin is another type of immunosuppressant drug which was also originally used to prevent organ rejection in transplant patients. It is in fact derived from a type of fungus. Even though the cause of Atopic dermatitis (eczema) is not completely understood and there is no cure as of now, what is known that immunological reactions occur in the skin of people with eczema and these are controlled by white blood cells (lymphocytes) that enter the skin from the blood. Cyclosporin decreases the production of chemical messengers which “switch on” these lymphocytes and thus dampen down strong allergic and immune reactions. It is available as capsules containing 10 mg, 25 mg, 50 mg and 100 mg of cyclosporin, however for children the liquid form is easier to give as a dose (one formulation is called Neoral®).

Side effects

Azathioprine has a very serious side effect and that is  ‘bone marrow suppression’, or ‘myelosuppression’.  The bone marrow is the site of production of the most important types of cell in the blood: the red cells (RBCs), the white cells (WBCs including neutrophils and lymphocytes) and platelets (important for blood clotting). White blood cells are critical in the body’s defence against infection, and if their numbers fall drastically (as did happen with my daughter),there will be a risk of potentially serious and even life threatening infection. Over the years it became clear that the patients who developed serious bone marrow suppression generally did so because they genetically inherited low TPMT activity. As mentioned earlier, this enzyme is essential in the chemical breakdown of azathioprine and thus has to be within a particular range for a person to be given this drug.

But no tests are really 100% foolproof as we saw in my daughter’s case. In spite of her test results being absolutely bang in the middle of the normal range and thus determining her dosage, within 3 weeks of putting her on this drug, she was hospitalised in the ICU with a life threatening infection due to severe “neutropenia” or an abnormally low number of neutrophils as a result of azathioprine induced bone marrow suppression. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood.

Hence, as in my daughter’s case, she developed life threatening infection and it was only the prompt and quality of medical attention, broad-based and potent antibiotics and antifungal medicines that saved her life. The dermatologist who had prescribed this drug had never seen this reaction in the many years that he has been successfully prescribing this drug to other children with such severe eczema. It became clear from my daughter’s reaction that there are other genetic variants that can be missed that can also make occasional patients susceptible to such severe adverse effects even while having the desired TPMT levels and these have possibly not been studied or accounted for.

Cyclosporin on the other hand is a potent immunosuppressant and starts to work very quickly (within 1–2 weeks) and the side effects of cyclosporin are almost all ‘dose-related’. Hence the side effects depends almost entirely on the dosage a person is taking although some people are more susceptible to the side effects than others. It cannot be given for long since the longer this drug is taken the more severe the side effects become. The main side effects of cyclosporin are hypertension (high blood pressure) and reduced efficiency of the kidneys (renal toxicity).  Blood pressure and kidney function need to be checked before treatment and monitored closely throughout treatment.

Regular and strict monitoring 

As with any such potent drugs, one has to be extremely particular about monitoring the relevant organ functions throughout the course of treatment. In Aiyana’s case, blood tests are a regular feature and she has almost come to terms with it. Initially I used to take her to one of the premier hospitals in Mumbai but in the past few months a phlebotomist has been coming home to collect her blood sample. He was referred by Aiyana’s pediatrician and is very gentle with her and it has made a world of difference as far as her blood collection is concerned especially since she has to go through this on a very regular basis.

In the case of azathioprine, the blood count levels become extremely important to monitor on a regular basis to check for bone marrow suppression. The medical protocol followed worldwide in the case of azathioprine is to undertake a blood test 3 weeks after starting treatment, then 12 weeks after starting treatment, and thereafter every 3 months if all the results are normal. However, as a learning from our traumatic experience, I would urge you to be on the side of caution and undertake the blood tests for your child every week for the first one or two months and then gradually space it out as per your doctor’s advice if there is no abnormal result. Such regular blood tests are a painful thing especially for a child but it is a necessary evil and must be carried out. These tests normally comprise a full blood count (mainly to check that white blood cell numbers – particularly neutrophil numbers – are not falling below normal levels), and liver function tests to ensure that the liver is not stressed.

When cyclosporin is given as the immunosuppressant, since kidney is one of the main organs which is affected, kidney function will need to be monitored regularly particularly the serum creatinine levels since any condition that impairs the function of the kidneys is likely to raise the creatinine level in the blood. It is thus important to recognize whether the treatment is leading to kidney dysfunction or not. The other important level to be monitored are the cholesterol levels since the reduced efficiency of the kidneys can also adversely affect the cholesterol levels leading to increased risk of heart disease.

Medicine that heals is not always sweet and caring words are not always pleasant

The main reason I chose to write about these 2 powerful drugs is that while there is a lot of information available about these drugs today on the net, it is not always easy to get the most relevant facts. One can get lost in too much of information all of which might not be completely relevant to a parent but more to a medical professional. Information about the plethora of side effects and adverse reactions from these drugs is also enough to scare away any parent from giving these to their children. I have tried to compile all the relevant and important information a parent should know before giving this drug to their child and bring it in one place.

The plan of these kind of treatments to control very severe eczema is, first, to achieve major improvement in the severity of a child’s eczema and then if possible to see it clear completely, though to achieve this may take several months or even years. We have had no choice but to use this treatment on our 7-year-old daughter and I hope that our experience and learnings come of use to other children afflicted with this condition in a severe form which usually affects their lives on a daily basis.  Of course, it is not easy for a seven-year old to take this medicine twice a day and undergo repeated blood tests, but as her caregiver I do not give her any option not too simply because we do not have any. We will have to evaluate her medication in the next few months and then go ahead with the next course of treatment based on her doctors’ recommendations.

I also wanted to share our experience with azathioprine so that other parents can take an informed decision while giving this drug and not repeat our mistake. One can simply never be too cautious where one’s child is concerned.

“Being a mother is learning about strengths you didn’t know you had, and dealing with fears you didn’t know existed”

20131213_180745Aiyana now lives an almost completely normal life with minimal itching and with not much outward physical manifestations of this skin condition which has had an adverse bearing on her social life in the past. I know we are all doing the best we can with the best possible treatments available at this point in time though I am forever in search of other better options that might come our way in the future.

Even then there are some moments that I am plagued by some doubts as to whether we have done everything that we could have to prevent her eczema from being so severe or something else we have not tried so far. I am so grateful for being given a second chance with her and I am sure all those who know her and are greeted by her sunny smiles would agree with me when I say there must be something we are doing “right” after all.