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

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

 

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“.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Eczema and its connection with books, music and meditation

It has now been almost three years that I have been writing about our family’s experiences of dealing with eczema. These are experiences that have shaped our life and changed it irrevocably as most chronic conditions inevitably do. Most of the times we do not have a choice about these changes and we can only let events unfold themselves as they occur. But we do have a choice as far as our responses are concerned. We can choose to accept these changes and deal with them or we can choose to rail at them and complain about them. While it is far easier to do the latter we chose the former path and we are only now seeing the positive outcomes associated with them. But dealing with any kind of lifestyle change is not easy, especially ones which are associated with health conditions.

Stress, anxiety and self confidence

nio pensativo mirando el mar

Since I am my daughter’s primary caregiver, I spend a lot of time focusing on her bathing and moisturizing routines, two crucial aspects of managing eczema. But I also spend an equal amount of time or even more on something that we don’t get to see. The emotional scars that are left behind in a child struggling to cope with a severe health condition day after day, month after month with no end in sight. The emotional pain of living with eczema, the erosion in self confidence linked to the constant scratching and physical rashes on the body, the frustrations which can build up due to the restrictions in terms of activities and diet to name just a few. The stress and and anxiety that a child experiences if not managed properly with due care and attention, can lead to many more complex issues once the child becomes an adult. And even though we do not realise it always, a child has his or her own share of stressors which may seem trivial to us but are actually very real and important to them. This is not something we can take lightly or ignore, this is something akin to a garden where the flowers and the trees have to be tended to and given a great deal of attention while they are still growing.

I had written a post earlier about how you can help your child cope with eczema and you can read about it at https://eczema-anindianperspective.com/2013/11/19/beauty-is-not-just-skin-deep-helping-your-child-cope-with-eczema/

This post takes that topic even further based on our own experiences since then and expands on that topic.  For us this aspect of managing eczema became even more important after our daughter’s catastrophic reaction to her medication’s side effect in 2013. She battled a life threatening infection and was hospitalized for a month. I have written about it in my post https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/

She also lost all her hair in a few days and had a tough time in school once she resumed a couple of months later. Her school discussed with and sensitised her classmates about her condition and sudden change in appearance including lack of hair.  But there were a few children who would tease her about her lack of hair and her appearance. Even outside school she became the subject of many stares and comments due to her physical appearance. It became painfully obvious that there would always be some people who were not sensitive enough to other’s sufferings and I would not be able to protect my daughter from such people the way I would have liked to. I decided then and there that I would ensure that I would teach my daughter to find the strength that was already within her and teach her ways to cope with such people. I would try and make sure that she would not lose her self confidence and self respect and that she would know that she had a choice. A choice as to how she would react to such people, a choice as to how to deal with difficult situations and a choice to be happy.

please help

It is really empowering to learn that while we cannot control what other people think and say we have a choice as far as our response is concerned. The stress associated with living with any chronic condition like eczema is usually very high and very real and I knew I had to figure out ways to manage it. Books, music and meditation became my tools to achieve this. Of course, all this did not happen overnight. It has taken a lot of research, time and effort to figure out what worked for us and we are still a work in progress. But what pleases me the most is that I can see the difference all this effort has made in our lives. In this post I would like to share in some details all that has helped us.

Books are the quietest and most constant of friends; they are the most accessible and wisest of counsellors, and the most patient of teachers.

Boy, standing on a pile of book reaching for a star

First I would like to mention some of the books that have provided not only my daughter but all of us with a lot of inspiration and encouragement. These are books which have simple story lines covering various topics like gratitude, happiness, strength, acceptance, compassion to name a few. I have been researching and buying such books for the past few years but a few have won a big place in our hearts. These are books I read to both my children again and again and they love to hear it every time. They are available on Amazon India (amongst others) and are easiest and most convenient to just order online. There are of course many many such books available if only one looks for them. The ones mentioned below are some of our family favourites.

  • Freckleface Strawberry by Julianne Moore- it is about a 7 year old red haired girl who has a face filled with freckles. She has to put up with all her friends calling her Freckleface Strawberry. It is a beautiful story about a girl who finds the strength to accept something that really makes her life difficult but ultimately she accepts it and then goes on to lead a happy life inspite of it. This book is the one that really helped my daughter accept her skin condition since it dealt with a similar problem.
  • Stand Tall, Molly Lou Melon by Patty Lovell- this is another book about a very short and feisty girl who has buck teeth, has a voice like a bull frog. She is worried about moving to a new school but her grandmother encourages her to be brave by just being herself, smile and sing loud and clear. She does just that and stands up to a bully in her school and wins a lot of friends eventually. It is a beautiful book about being yourself and real courage.
  • What Does It Mean To Be Present? (What Does It Mean To Be…?) by Rana Do Orio- this book is about the meaning of being present, paying attention to each and every moment. In a simple but profound way it teaches the importance of enjoying each and every moment as it comes and some key values like compassion, kindness
  • How Full Is Your Bucket? For Kids by Tom Rath and Maurie J Manning- This book is about a boy and a fictitious bucket which hovers above his head just as he was told by his grandfather. He feels happy when the bucket is full and feels sad and miserable when it is empty. He soon realizes that everyone around him has a bucket just like his and that during the day either the bucket is fills up or it is becomes empty. He also learns that by helping to fill another person’s bucket he also fills up his own. This book teaches us in a very simple way the importance of self esteem, helping others and taking responsibility for one’s happiness.
  • Zen Shorts (Caldecott Honor Book) by Jon J Muth- This is a gem of a book which has three short and simple stories each teaching us a different life lesson. One story teaches us about happiness by living in the present moment, another is about letting go of the past and the third one is about accepting change and uncertainty as being an intrinsic part of life. These are supported by beautiful illustrations and is a superb addition to one’s list of books to read to children

“What lies before us and what lies behind us are small matters compared to what lies within us”

wellbeing and healthy lifestyle concept, yoga background

Meditation, being a very ancient art is also one which is synonymous to our culture. Sadly, many of us seem to have lost touch with it and all that it has to offer us. The good thing is that it is once again gaining prominence not only in our country but around the world. There are different types of meditation practices that one can follow but the one that I will be discussing here is called “mindfulness meditation”. I find this type of practice to be very child friendly and flexible both of which were major requirements for me. Mindfulness is that art of paying attention to the present moment in a non judgmental and friendly manner. Over time the practice of mindfulness can help us look within to find the strength in times of trouble, lower our stress levels, tap into our inherent compassion and also show us how being grateful is the key to real happiness.

I use a mix of simple formal meditation practices and informal practices which I try and weave into our daily routine. Of course, when one slips up, you have to simply start off from where you left off without judging yourself or any one else for the same. This is one of the key things that meditation teaches us over a period of time, the practice of paying attention which by nature should be non judgemental. It enables us to accept ourselves as we are warts and all and is the first step towards self awareness.

I use some music CDs with guided meditation practices and a few books to incorporate some elements of mindfulness into our daily lives.

  • The CDs that I use are
    Sitting Still Like a Frog: Mindfulness Exercises for Kids (and Their Parents) by Eline Snel – it is a book and CD combination which works very well for us. The book is for the parents/adults to get a sense of the meditation practices and serves as a guide to the guided mediation. The guided meditations are simple and easy to follow and should ideally be done together as a family. There are meditation practices for different moods and problems and are very easy to follow by children on their own as well. You can also buy the one that is available for teens.
  • Planting Seeds: Practicing Mindfulness with Children by Thich Naht Hanh- This is from the practice run by one of the most well known Minfulness teachers in the world called Thich Naht Hanh. It has a combination of music and guided meditations along with a book to support it. This book discusses in details the impact of mindfulness in different aspects of life and how to bring more compassion and peace to the world. The practices that we love the most are Pebble Meditation and the Deep relaxation.
  • Planting Seeds: Practicing Mindfulness with Children by Amy Saltzman- these are a set of guided meditations through short stories which will appeal to all children. Again, these deal with various feelings and emotions with the help of simple breathing exercises. This is available in book form and on streaming apps like Spotify (not available in India at the moment).
  • CALM for kids- this is one of my favourite mobile phone (and desktop) apps for meditation. They have now launched a section for kids where they have guided meditation practices through lovely stories.
  • Insight timer for kids–  a new app that I have started using recently has a huge variety of guided meditations by different people and is quite useful in its variety.

A couple of books that I must mention here are on mindful parenting. They have been a valuable tool in giving me practical advice and ideas about incorporating mindfulness into our daily lives in simple ways. It has a tremendous impact on our lives both in terms of health and happiness and this has been confirmed in various scientific studies. The two books that have struck a chord with me are

There are many more such books on parenting and mindfulness, these are two that have really made a difference to our lives. These books not only cover the basic concept of mindfulness, they also offer practical ideas about how to incorporate into our own lives including our parenting practices. There are beautiful formal and informal practices in the books which are very child friendly and can be enjoyed by the whole family.

Music is the rhythm; art is the passion and life is the subject

Piano keyboard background with selective focus. Warm color toned image

Music can play a therapeutic role in addressing various physical, social, emotional needs of a person. It can play an important role in managing chronic eczema as well by lowering stress levels and providing solace in times of emotional turmoil due to this condition. Any kind which can help one relax will do. Music is used by many as a form of therapy but we do not need to be trained as one to use is in our daily lives. The right kind of music can inspire us, lower stress and generally contribute to our overall wellbeing whether it is listening to music, playing it in some form or singing songs. The music CDs for meditation that have been mentioned earlier work very well in this aspect.

Girl paints a coloring book for adults with crayons

Art is another form of therapy which is widely used to deal with stress and anxiety. And it is one of the best suited for children as it can enhance creativity at the same time. Research also shows that certain shapes and patterns like mandalas are more helpful in reducing stress than others. There are now a lot of Mindful colouring books available which are meant for this purpose. You can use them to spend some quality time with your child and at the same time switch off from daily stresses and focus on a simple but pleasurable activity.

A conversation is so much more than words: a conversation is eyes, smiles and the silence between the words

Close-up of family discussing on sofa

The simple art of conversation and dialogue is an amazing way of helping your child cope with the stresses of living with eczema. Conversation was something which was pretty mainstream in our earlier generations but is now being overshadowed at times with our hectic, busy schedules and digital domination. Switching off from the digital world from time to time for the family as a whole is one of best ways to enable this. I am yet to implement a digital curfew but I intend to from time to time starting with a few hours on weekends.

I struggle myself to find a balance at times and make sure that we have regular chats from time to time as a completely family or even one on one when required. Many a times during our heart to heart chats before bedtimes my daughter and my son have shared their worries, problems and even their triumphant moments. We have come to know each other’s way of thinking, shared some of our worries and our conversations have often helped my children calm down with the simple act of listening.

Yoga  and others

There are many more such ways in which you can help your child and yoga is the one which comes foremost to my mind. This is something that I have not really been able to explore much till date with my children but I wanted to mention anyway. I plan to integrate this practice as a part of the bedtime routine in the near future. You can find out about some child friendly yoga classes in your neighbourhood plus there are a lot of online options as well nowadays. These include websites like gaia.com with streaming videos as well as those offering digital downloads for those unable to join a class for any reason.

There are also some lovely books which offer simple exercises which can be done anytime or before bedtime to promote restorative sleep. There are of course many other books that are available for children.

When the mind, body and spirit work as one, anything is possible

mind, body, spirit, soul and you

You may have been wondering why I have chosen to write so much about mindfulness, meditation, yoga, emotional counselling with regards to eczema when most of us are used to dealing with the medications and the treatments. Medications and treatments of course play a large role in dealing with eczema and we are familiar with most of them.

What I have learned over the past few years of dealing with my daughter’s eczema is that true healing is a combination of treating the body along with mind and spirit. My daughter would not be where she is today in terms of her positive attitude towards life and a cheery disposition inspite of struggling with severe eczema had I not placed equal importance on all three aspects. I have learned and I am still learning from many others who have done just that and much more and inspire me to carry on.

As you would have also realized after reading my post, I am very passionate about books and they have been of immense support for us. They play a very important role in our lives in managing eczema and I wanted to share it with you. I have also had the privilege of writing a book with my daughter’s dermatologist Dr Amrita Talwar this year called I Have Eczema… So What? – Inspirational story book for children. I have mentioned it earlier as well but wanted to mention it in this context. The book is a beautifully illustrated children’s book about a 9 year old girl with eczema, who faces all kinds of emotional and physical problems. She eventually learns to manage her eczema and cope with it in a very positive manner with the help of her family’s love and support.

IMG-20160418-WA0007

The book is available at some Crossword Stores and online at amazon (physical and ebook format) and flipkart (physical format). You can buy it at

 

 

I hope that some of the things that I have mentioned in this post will be useful for you and your family in managing your child’s eczema.

May we all find the “strength to endure the pain, the wisdom to think things through and the courage to face our fears” …

A magical and memorable evening at the launch of my book “I have eczema…so what?”

A few glimpses of the book launch at Crossword, Kemps Corner, Mumbai on 21st of April, Thursday

It was a magical, memorable evening on so many levels. An evening with friends, family and well wishers who made the book launch so special. This book is the culmination of our family’s journey, with eczema as our travelling companion. I am blessed to have my family supporting and encouraging me in writing this book with my daughter as my inspiration.

We have received numerous congratulatory messages and wishes since yesterday from friends, family , acquaintances and other well wishers. Our hearts have swelled with pride and joy at all the love that you have shown us and this book so far and this is only the beginning!

The beautiful journey of today can only begin when we learn to let go of yesterday

My family and I have learned that in order to move ahead it is sometimes essential and wise to let go of things we tend to cling to. We often cling to painful experiences, grudges, mistakes and other negative emotions which tend to hold us back. They hold us back from new experiences, new memories and a peaceful and content life. This realisation has helped us to put our painful experiences behind us, learn from them and look ahead.

I am happy to say that this is a new chapter in our lives especially in mine as I embark on my second profession in the health and wellness industry as a certified Health Coach in the next few months. I would have certainly not foreseen the changes that I have had to make and and the path that these changes have led me to. All I can say is that by keeping an open mind and embracing all that life has to offer has helped us more than we would have ever thought.

My book is available on amazon at http://www.amazon.in/dp/8192006492 and on flipkart at http://www.flipkart.com/have-eczema-so-what-english/p/itmeg26ntvykxzbu?pid=9788192006499. 

 Thank you for being a part of this change! Thank you for your support!

 

 

 

It’s finally here! My first book “I have eczema….so what?”

Invitation - eczema Book launch

I had mentioned in my last post that I was writing a book for children suffering from eczema. This is in conjunction with my daughter’s dermatologist, Dr Amrita Talwar who is a coauthor of  this book. Both Dr Talwar and I realised the need for a book which is meant for children who have eczema since there are hardly any resources for them even though there are many for adults.

It gives me great pleasure to introduce you to Maya, the 9 year old protagonist of my book “I have eczema…so what?”

Page layouts 1-2

9 year old Maya from “I have eczema…so what?”

The book  is written through the eyes of a 9 year old girl called Maya who suffers from eczema. She has to deal with various issues like the physical discomfort and pain of living with eczema, social and schooling problems like isolation and teasing, emotional upheavals and even stress. This book would first and foremost help children to understand and learn about eczema in a child appropriate manner. Maya’s family rallies around her and ultimately as a team they manage to help her cope with eczema. Maya and her family are thus able to make eczema a part of their lives so that it does not completely overshadow everything else. It is a book for families as much as it is for children suffering from eczema.

I have eczema…so what?” is ultimately a story of courage, love, teamwork and the strength that comes from within by being a part of a loving and supportive family. It is based on our experiences of dealing with our daughter’s severe eczema, her trials and tribulations and the strategies that we developed over the years to deal with it.

Book launch details

Date: 21st of April, Thursday

Venue: Crosswords, Kemp Corner in South Mumbai

Time: 6 pm onwards

Individually we are one drop, but together we are an ocean 

For those of you who have been following my blog will know how far we have come since I first started writing. It all started right here, with this very blog. This is where I honed my skills and which has now culminated into my first book. However, the book is a result of teamwork as is usually the case.

I am blessed to have Dr Amrita Talwar as my coauthor and mentor for this book, Ms Preeti Vyas (Fun Ok Please) as my publisher and Ms Shraddha (Happy Fish) as my illustrator. Amrita has also played a key role as the person who encouraged me to write about our experiences in the first place starting with this blog. Thank you Amrita for always encouraging and believing in me! 

Family, a group experience of love and support

20160325_134137

My inspiration is of course my 9 year old daughter who faces her situation every day with a smile on her face, manages to get up every time she falls and shows us the what true courage and grit is all about. My husband, my 5 year old son, my mother and our immediate family have all played their critical and immensely supportive roles in enabling us to deal with eczema as a team. This book is a result of this support as I have drawn my own strength from my family and friends. In fact, I have not only been able to act as a primary caregiver to my daughter but I have also found the courage to share our experiences through my blog posts, articles and now this book. Words are really not enough to express my gratitude…but I need to say them anyway, so a big THANK YOU!    

Incase you are interested in this book and/or joining us for the book launch, please get in touch with me via-

email at eczemaanindianperspective@gmail.com,

twitter at @eczemainindia 

facebook at https://www.facebook.com/eczemaanindianperspective/.

 

 

 

 

 

 

 

 

 

 

 

The only impossible journey is the one you never begin….( we are on our way)

Man on top as silhouette in mountain

A new year has begun and we are two months into it already! I know I have been missing in action lately and I am really sorry. Having said that, I am happy to say that there are lots of developments at my end. A few of these are to do with my daughter’s treatment and a few others are associated with related topics. So you see, I have a lot to share with you.

First I would like to mention a few things which are uppermost in my mind. I would like to begin my first post this year by expressing my gratitude for all that I have and enjoy. I am really grateful for all the precious and memorable moments spent together as a family. I am also thankful for the constant and untiring support provided by my daughter’s doctors and by our extended family. As a family dealing with a child with a chronic condition, we know only too well how difficult it becomes from time to time, how very exhausting. It is only with all the support that we get that we have managed to come this far.

While it is very difficult to witness the pain and suffering that my daughter has to endure on and off due to her severe eczema, we make sure that as a family we do not forget to have fun, to do the small and big things which we enjoy. Those of you who have been with us from the beginning will know that we have come a long way in the past few years.

Confirmation of a “leaky gut”

leaky_cycle-716x675

(Source: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/)

In my earlier posts I have shared with you that my daughter is currently on a treatment based on Functional Medicine principles. I have written in details about Functional Medicine in my earlier post (https://eczema-anindianperspective.com/2015/09/10/the-functional-medicine-and-gut-health-approach-to-managing-chronic-conditions-including-eczema/) and you can find out more about it for yourself using the links given in the post. My daughter has been on this treatment for a bit more than 3 months now and we have just done some tests for her to see if there are any improvements. But before I get to that in my next post, a bit more about these tests which confirmed that she had a gut health issue and determined her course of treatment.

The whole approach of this treatment is to heal the gut (or small intestine), wherein lies the cause of many autoimmune disorders and chronic conditions including eczema. These very specific and specialised tests which were done in London last year confirmed what I had been reading about and what I had suspected over the past year or so. Having a “leaky gut” meant that undigested food proteins and bacteria were passing on to the blood stream from inside the intestine and causing her immune system to overreact. This had caused systemic inflammation inside her body over a period of time and had led to her eczema eventually.

One of these tests assessed the gut barrier damage by measuring antibodies to barrier proteins called Occludin and Zonulin. The other factor was the presence of Lipopolysaccharides (LPS) which are toxins given off by some of the gut bacteria. If they are found in the blood, it usually means there is a breach in the protective gut lining. Both of these were present in her bloodstream in high amounts.  The other tests showed that her microbiome (the collection of symbiotic, commensal and pathogenic bacteria, fungi and viruses which reside in our gut) was also in poor shape and that her body was not able to digest and absorb the nutrients efficiently. All of these tests collectively reaffirmed the fact that she had a gut health issue leading to a “leaky gut” .

Ongoing Functional Medicine treatment

 

Gut Health Word Cloud On a White Background.

The primary objective was to start healing her gut using a combination of supplements and medical foods, lifestyle and dietary changes. Hopefully, over a period of time theese measures would reduce the chronic inflammation in her system and bring her eczema under control without the use of harsh medications. I had already made the necessary changes as far as her diet (https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/) and lifestyle (https://eczema-anindianperspective.com/2015/07/23/green-power-greener-alternatives-for-laundry-and-cleaning-products-especially-for-eczema-and-sensitive-skin-2/) were concerned.

She has been prescribed supplements to repair and reinoculate her gut and strengthen her immune system. These include supplements like L- Glutamine (to repair intestinal lining), probiotics (we use a brand called Culturelle as well as Bifido Complex by Metagenics), Omega 3 (Nordic Naturals), Metagenics GI Sustain (a medical food containing vitamins, prebiotics, minerals). It has been a bit more than 3 months since we started her on this treatment which continues along with her regular immunosuppressive medication (Methotrexate). Her test results will come in anytime now and will show if there is any improvement since we started her on these supplements in October. I will share the results with you as soon as I can.

The silver lining in all of this is the fact that for the first time since the doctors put her on harsh immunosuppressive medications since 2012 (Azathioprine, Cyclosporine, Methotrexate at various points in time), this is the first time that I have been able to reduce her dosage from the optimal level. She has been doing fine on this dosage for the past month or so. It is a small but important step in the right direction and it really counts.

(For further reading: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/

http://drhyman.com/blog/2014/10/10/tend-inner-garden-gut-flora-may-making-sick/

http://www.mindbodygreen.com/0-10754/the-6-best-ways-to-heal-your-gut-restore-your-health.html)

Difficult roads often lead to beautiful destinations

Famous Redwood Highway

It is so true! This is something I have come to know the hard way. Life changed for us completely about 4 years back when our daughter’s eczema turned into something so much more severe and complicated in the form of a chronic condition. I had to let go of my past way of living as a full time working mom and commit myself full time to taking care of the family and my daughter’s special needs. Of course, the whole family has had to make changes regarding our social commitments, travel, diet and other aspects of life. It has not been an easy road for any of us and indeed our daughter has faced the brunt of it. But even as I wish my daughter never had to deal with eczema at all, it has shaped us all in ways which have made us stronger, kinder and more resilient than ever before.

I have been sharing my research and knowledge about eczema and its related topics with you through my blog.  I also realised that in order to make all the changes necessary to manage my daughter’s eczema, I had to first make sure that she understood her condition in an age appropriate manner. I did this with the help of information and facts on eczema, countless discussion and counselling, story books and other means. This has helped her to not only accept the physical aspects of dealing with eczema (like moisturising and bathing routine, diet etc) but also deal with the far more difficult emotional aspects of living with this chronic condition.

My daughter’s dermatologist Dr Amrita Talwar has been instrumental in encouraging me to share our story and subsequently to write a book about eczema specifically for children. This has led me to write a book for children on this topic and is the first major development at my end. Both Dr Talwar and I realised that while there are many many resources for parents and adults who are looking for information on eczema and ways to deal with them, there is practically nothing for the children who are actually suffering from eczema. Hence the decision to write a book based on the experiences of a young girl dealing with her severe eczema. This book should help other children understand, accept and ultimately deal with their condition in a better manner. This book is scheduled to be published in the month of April and I will keep you posted on the same.

The other development at my end is that I will begin a new chapter in my life in the form of health counselling as a certified Health Coach. Over the past few years I have gathered a lot of knowledge about eczema and related topics pertaining to lifestyle ( clothing, detergents, moisturisers etc), foods  ( gluten free, nut free, dairy free) and their availability in India, essential oils, stress management through mindfulness meditation etc. I  would like to put all of these practical knowledge of dealing and living with a chronic condition as a caregiver to good use and share with others who are struggling with similar issues.  I decided to augment my experience and practical knowledge with a course from the esteemed Dr Sears Wellness Institute in the US to become a certified Health Coach. As many of you may know already, I had also started a Support Group for parents whose children suffer from eczema in Mumbai. I had taken a break due to my other commitments last year but I am planning to restart the Support Group meetings as well. My counselling work is also likely to begin in the next couple of months.

I can’t change the direction of the wind, but I can adjust the sails to always reach my destination

sailboat and sunset

This is exactly what I have had to do  in order to cope in the past few years as the primary caregiver for my daughter. This is what I teach her as well. While we cannot always change or control all the tough situations that life brings us, we can choose how we react to them.

In this post I have decided to focus only on the few baby steps that we have taken forward. We need to celebrate every little bit of achievement even if it may not look like much at all at that time. We have realised the hard way that dealing and living with a chronic condition is more like a marathon than a sprint and every step forward is a reason to rejoice. I hope we have more such reasons to celebrate in 2016!

 

Green power!! (greener alternatives for laundry and cleaning products especially for eczema and sensitive skin)

I am publishing an updated my article on ecofriendly and natural alternatives for laundry and cleaning needs at home. It is a primer for those of you who are looking for eco friendly and natural alternatives for a cleaner and greener home.

Cleaning word cloud concept

I find that it is important for me to highlight the fact that there are harmless, natural, environment friendly laundry, dish washing, and cleaning alternatives which are available to us. In this particular post I have focused on the laundry and household cleaning agents that we use (In subsequent articles I would be focusing on the impact of our food habits and diet). While most of us do all that we can as far as moisturizers and bathing products are concerned for children who have eczema, some of us are not aware that the regular dish washing, cleaning and laundry products used in a household can also have a large and harmful effect on sensitive skin and allergy/eczema prone children (and adults). In India especially, eczema and other allergies are a recent phenomenon as compared to the West.

While I was happy using regular detergents and cleaning products for my household cleaning and laundry needs, I was particularly happy using highly fragrances and foaming cleaning/laundry detergents and thought that all products which were labelled as “child/baby friendly” and “gentle on the skin/clothes” actually were child friendly and gentle on the skin. But after a bit of research I was quite surprised to find that quite a few of the products that I had been using all my adult life were cumulatively doing more harm than good to my entire family and this was especially true for my daughter who has severe eczema. That is when I started looking for alternatives and was pleasantly surprised to find out that there are much better, natural, harmless and environment friendly options which might also be much more economical for regular use. Now, over the past couple of years in my quest to manage my daughter’s severe eczema, I have made a lot of changes in our lifestyle which includes skincare products, laundry products, dish washing products as well as other household cleaning products.

Natural Non-Toxic Cleaning Products

Since I am sharing my own personal experience in using these products, I have restricted this post to products which are available to Indian consumers only. Also, please note that I am going by the information provided by the manufacturers as far as the ingredients are concerned, certifications as mentioned and in some cases I have taken into account the product reviews by other users. 

 All that foams is not soap!

 Soaps and detergents are two different things but are often mistaken to be the same. While soaps are traditionally made from fats and oils and have been around for centuries, detergents are usually of synthetic origin and is a much more recent phenomenon. Detergents react less to minerals (found in hard water) than soap and hence is now the preferred choice for most.

soap-bubble-kidsstoppress

  • Sulphates are surfactants which are used in a wide range of products especially laundry and dishwashing detergents in order to reduce the surface tension of water thereby improving its ability to wet things and remove the dirt.
  • Other products where Sulphates are found are bathing products like shampoos, shower gels etc, toothpastes and even baby care products and it provides the “foam” that we are so used to.
  • Nowadays most of the skincare and laundry detergents usually contain the gentler Sodium Laureth Sulphate (SLES) plus a host of other chemical fragrances and preservatives and not the much harsher surfactant Sodium Lauryl Sulphate (SLS).
  • But even SLES is a chemical which is harmful for sensitive skin and it is just one of the many chemicals which are present in any cleaning/skincare/laundry products.
  • The other common chemicals are preservatives like Parabens (Methyl, propyl, isbotyl to name a few) and Methylisothiazolinone fragrances which are mostly made of synthetic chemicals and synthetic colours,  found in many baby and child care products.
  • Many organic and natural products have preservatives like Parabens and foaming agents like SLES unless stated otherwise. Hence it is imperative while buying any such product to check the ingredients listed carefully no matter what the label says in the front. The good thing is that there are detergents (laundry and cleaning purposes) which are available to us today which use natural ingredients and are also fragrance free.

Soapnuts- the underrated cleaning agent

 Soapnuts (or reetha as it is known in India) is actually not a nut but a dried berry or fruit which is highly effective in powder and liquid form and can be used to clean clothes, jewellery, dishes, hair and other household items. It is found mostly in India and Nepal and was used extensively in India to wash clothes and hair long before liquid detergents and shampoos took over.

 

Nutshells of soapnuts in a cotton bagThe saponin which is found in the fleshy part of the soapnut is a 100 % natural hypoallergenic surfactant which is believed to have antibacterial and antifungal properties as well.

  • Soapnuts can be used for cleaning pretty much anything and is the only cleaning product which is completely natural. Any other product which is labelled ‘natural’ will contain at least some chemicals like preservatives, fragrances amongst others.
  • The other important aspect of using soapnut is that it extremely convenient to use in washing machines (front and top loading) and dishwashers (in liquid form).
  • We use soapnuts regularly as the main cleaning agent for all our clothes and white vinegar and essential oils (lemon is my favourite) as a fabric conditioner and to remove grease and add natural fragrance to the laundry.

Other laundry products

 Apart from soapnuts products which are natural, biodegradable and convenient to use either by hand or in washing machines are as given below.

Power Laundry, Liquid Laundry and Bio Laundry Bar from the Rustic Art brand: The main ingredients in these products are soda ash, natural neem soap powder, glycerine (for liquid laundry), non edible oils (for soap bar) and natural lemon extract. I use these products for my bed linen, towels, soft furnishings and other heavy materials, delicate clothes and woollens (Liquid laundry) and I use the Laundry bar for the tough stains.

rustic_art_power_laundry-kidsstoppress

Bio-D from Dailydump.org: Bio-D is a bio detergent by dailydump.org (a brand of Bangalore-based PBK Waste Solutions Pvt Ltd) which is a biodegradable product made from palm oil. I have been using it as an alternative to the Bio Laundry bar from Rustic Art for the past year or so for the clothes which are handwashed.

Another product which is relatively new and is available in India is Kyra Natural Detergent Powder which is made of organic soapnuts. I plan to use this in the near future.

Home clean home

 There are various household non toxic and environment friendly cleaning products which are available to us. One can use basic kitchen items like white vinegar, baking soda and lemon to make cleaning products. I have used a combination of these from time to time to clean my kitchen pretty effectively. ONe of my favourite recipe for a multipurpose cleaner is as given below-

All-Purpose Cleaner recipe from goodgirlgonegreen.com

3 parts filtered water

1 part vinegar

1-2 tsp lemon juice

5-7 drops of lemon essential oil

Source:http://www.goodgirlgonegreen.com/7-diy-cleaning-recipes-using-vinegar/#sthash.dwxieNSg.dpuf

(You can check out more useful articles on homemade and non toxic cleaners from the following websites-

http://www.goodhousekeeping.com/home/cleaning/tips/a24885/make-at-home-cleaners/

http://www.thenewhomemaker.com/cleanorg/vinegar.html)

Natural cleaner. Vinegar, baking soda, salt, lemon

But for those who want a more convenient off the shelf option there are other products available as well in India. These products are made using natural ingredients like essential oils, plant extracts which are thus biodegradable, non toxic and eco friendly as well. I regularly use the products listed below for my cleaning purposes:

  • Just Mop Spray- Multipurpose Household Cleaner and Just Mop- Herbal Surface Cleaner from the brand Herbal Strategi
  • Floor and bathroom cleaners from the brand SOIL
  • Floor cleaner from the brand Safe O Shine

Harmless dish washing alternatives

Dish washing detergents also use foaming agents, synthetic fragrances and other chemicals to make them extremely effective in cleaning grease and dirt. But if you are really interested in making a change for greener alternatives, there are other options available.

One option is to make a dishwashing liquid from basic items like washing soda, citric acid and vinegar like the recipe mentioned below from the blog myhealthygreenfamily.com (source: myhealthygreenfamily.com/blog/wordpress/homemade-borax-free-dishwasher-detergent-with-secret-ingredient/) which also can be used in the dishwasher

1 cup washing soda (old recipe used  baking soda)

1/4 c. citric acid

1/4 c. coarse salt

10-15 drops of citrus essential oil (Optional.  Orange, grapefruit, or lemon essential oils have great cleaning as well as antibacterial properties.)

Distilled white vinegar (in the rinse aid compartment)

Mix first 3 ingredients well in an air tight container. Add essential oil.  Mix again.  Fill your rinse aid compartment with undiluted white distilled vinegar.

Use 1 tsp. detergent for average loads.
Use 1 tbsp. detergent for extra greasy, dirty loads

White distilled vinegar can be thus be used along with lemon essential oil as a rinse aid thus eliminating the need for any artificial rinse aid products.

Another option is to buy a scrub made of the combination of soapnuts, shikaki (dried fruits of the Acacia tree native to Asia) and lemon peel which is a completely natural, non toxic and ecofriendly option for dish-washing by hand like the one by dailydump.org.

Availability and delivery in India

I have been able to find out about all the products mentioned earlier through a lot of research on this topic over the past few years. I have also managed to source these products in a few cases through the manufacturer’s own websites but more often than not through the various websites advocating a green, eco friendly and healthier way of life. These are websites which list organic foods, clothing, personal care, cleaning and other products.

Some of my favourite websites (with quick delivery and good service) are as listed below ( in no particular order):

  • DailyDump.org : A comprehensive website which promotes green, eco friendly and sustainable lifestyle through composting and non toxic products for home and garden. This website has the Vanastree soapnut and shikaki scrub (manufactured by Dailydump) that I use for my dishwashing needs and the Bio- D biodegradable detergent for laundry purposes. They also have their own brand of soap-nuts (108 Soapy Nuts).
  • NaturalmantraGreenngood and naturallyyours.in: These are comprehensive websites which list organic foods, supplements, natural home care, personal care products etc and is very convenient to buy laundry and household cleaning products from. I use all of these websites from time to time for my house cleaning, laundry and other household and organic grocery requirements.

I have compiled some of the easy and convenient ways in which you can use non toxic, natural alternatives for your household cleaning, laundry and dishwashing needs and their availability. I hope that this will encourage you to make your home a greener, eco friendly place for your family and friends.

Please feel free to get in touch with me for any queries or if you have any suggestions on this topic.