Essential oils for managing eczema

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. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!

 

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

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.

 

 

The only journey …is the journey within

I have been juggling a lot of balls in the air lately and in the midst of doing that I have fallen behind in my blogging lately. But I am happy to say that there have been some developments at my end with regards to my daughter. Her schooling is one of the things we have been dealing with and thinking about for the past six months or so. As I have mentioned earlier, Aiyana is currently on a low dose of immunosuppressive medication to control her eczema. I am sharing our experiences in the hope that it might help other children who are in a similar situation in some way.

Education and eczema

Inspite of the immunosuppressive medication, her eczema becomes worse when she sweats since her itching increases considerably. Aiyana’s school, Bombay Scottish in Mumbai, has been very supportive. She is excused from any outdoor activities including the school assembly, helped with her moisturisation and medications as and when required and generally taken care of as a whole. We make sure that she is picked up from school in the afternoon by car and does not have to travel in the hot sun while coming back home. But even that is not enough to help with her to cope with the sweating and itching and scratching at school.

As you would be aware, Mumbai has a tropical climate and is humid almost the throughout the year being close to the sea. She started missing school on a regular basis due to heat rashes and eczema flare up ( in India, only schools following an international curriculum are air conditioned). She would itch all over and therefore scratch in the class with a constant fear of being seen by her classmates. After consulting her doctors we finally decided to move her to a school with an air conditioned environment which we hope which would be more comfortable for her. To this end we did a 2 week trial in a school (based on international curriculum) with an air conditioned environment. This was possible entirely due to her dermatologist who helped to arrange this for her. At the end of 2 weeks it looked like it did seem to make a difference and she was quite comfortable in this environment. However, it still took us a while to decide on and finalise a school for her and our son (who starts school this summer).  This process is finally over and just last week we secured admission in an international school closer to home. Both my children start school in July and I am hoping that my daughter will be able to attend school regularly without the discomfort of constant itching due to sweat and subsequent scratching and pain.

A medical condition like this does not end with medications and visits to the doctor. Life is a constant struggle to carry on with routine activities on a daily basis under the onslaught of an unbearable itch (especially when there is a flare up). My 7 year old daughter used to be in constant fear of being seen by classmates while feeling the unbearable urge to scratch in odd places.  As I read somewhere recently, “eczema can be compared to a bully who sometimes keeps going for days on end, then leaves, only to reappear“.

Sleep deprivation is an added burden to bear for such small shoulders due to the itching and scratching at night at times. Even though Aiyana’s medications keeps  her eczema under control most of the times, there are frequent phases when it becomes worse due to stress, illness or other triggers. Antihistamines do not seem to help much in her case at night time and it is a difficult time for us as a family. It in fact happened very recently due to her illness and seems to get aggravated during times of ill health due to any reason whatsoever. While those nights (and days) seem to be a never ending cycle of itching and scratching, it is very important to provide constant support and keep your child’ spirits high. I try to make sure that I do not portray a defeatist or negative attitude and distract her as much as possible and find ways to make her itching more bearable (like rubbing instead of scratching).

Ayurveda- an ancient Indian way of life and healing

I am taking Aiyana for 2 weeks to I-AIM Health Care Centre near Bangalore (in the southern state of Karnataka) for an Ayurvedic check up and treatment. It is founded and run by Padmasrhi Darshan Shankar, known for his outstanding contributions in the field of revitalization of traditional systems of health-care in India. Ayurveda is not simply a healthcare system, but a form of lifestyle adopted to maintain perfect balance and harmony with nature thus making it a wholistic system of medicine. I am hoping that our traditional and alternative form of healthcare is able to complement and control my daughter’s eczema and help her in the long run. I will write more about it later once we are back from our trip. 

 

 

 

 

 

 

Nutritional supplements- worth a try

Through interaction with other parents whose children have eczema, I have come to know that in some cases  nutritional supplements like Omega 3 oils, probiotic ( probiotics are organisms such as bacteria or yeast that are believed to improve health and are available in supplements and foods) and multi vitamin supplements have helped to lower the incidence of flare ups in childhood eczema and bring some under control. There is no concrete scientific evidence as of now to prove this conclusively and studies are going in some of these areas. Due to this, doctors rarely prescribe these as part of the normal course of medications for Atopic Dermatitis. But after reading up on these and consulting Aiyana’s doctors about the same I decided to try the Omega 3 and the probiotic supplements for some time for my daughter.

Probiotic

Omega 3 oilI did a lot of research on a suitable and safe product (and brand) for Aiyana ( there are many brands and types of Omega 3 oils and probiotic supplements worldwide) and based on the reviews, some literature etc I shortlisted the 2 products as given below-

 Nordic Naturals Omega 3-6-9 Junior and Rainbow Light Probilicious  Gummies  for children.

Aiyana has been taking these supplements for a few months now. I will be able to share our experience only after a reasonable period of time as these kind of steps usually work in the long run and the impact might not be immediately visible.

 

Its time to turn life’s stumbling blocks into stepping stones

A cnikihronic medical condition like eczema is rarely only a physical struggle, a lot has to do with an immense amount of inner strength that is required to cope with this on a daily basis. My daughter has to deal with the obvious consequences like physical discomfort, sleeplessness, fatigue as well as the social, emotional consequences of dealing with this condition everyday. It is as much my responsibility to make sure she is as comfortable as possible at a physical level as it is to ensure that she is equipped to deal with this condition at an emotional level keeping her self-confidence intact. She has grown stronger emotionally as a person since her traumatic month long ordeal in the hospital last summer due to an unforseen reaction to a medication given to control her eczema. (I have written about our experience in the post- “…the tough get going- part 2”)

I know that I have succeeded to a large extent in my endeavour when friends, families and even complete strangers praise my 7 year old’s cheerful smiles, her sweet and caring manners and her emotional strength.

Bath time! (And skin care routine for eczema)

Skincare is an integral part of the treatment for eczema. Dryness of skin due to eczema occurs since the skin is unable to retain moisture. As far as my daughter is concerned, her skin care routine during bath and before sleeping at night usually takes up to an hour at times. I also moisturize her in between as many times as required depending on the weather and skin condition. She gets quite frustrated at times since it’s quite elaborate, but there is really no choice. For someone who such severely dry skin we have to take all precautions to prevent her skin from drying out.

Bath routine

The process that I follow is that of “moisturize and seal”. The skin is moistened during bath time and then followed immediately with sealing the moisture in. Also, I am very careful about the bath products that I use on her. I use only non scented, soap free cleansers on her skin . And if her skin has flared up a lot, I sometimes avoid applying anything on her skin at all apart from water or just sponge her gently. The bath is usually kept short to about 2-5 minutes to avoid further drying out of her skin. The steps that I take for her bath are as follows-

  • a short (2-5 min) bath that helps moisturize the skin
  • use some kind of emollient or bath oil/oatmeal powder in the water
  • use a soap free moisturizing cleanser on her
  • apply a thin layer of liquid paraffin to seal the moisturize (if required)
  • pat her skin dry (not rub)
  • apply moisturizer (ointment or cream depending on weather) as soon as possible before the skin becomes completely dry

Cleansing

Soap substitutes and bath emollients are very useful to clean and moisturize skin prone to eczema. I use bath emollients like Hydromol/ Oilatum bath emollient or oatmeal powder to add to her bath water to provide additional moisture to her skin.

Based mostly on the experiences of other parents across the world (through their blogs and other interactions over the years) I completely avoid bath and skincare products which have Sulphates in them and Sodium lauryl sulphate (SLS) in particular.  Some studies have shown that Sulphates and SLS in particular can damage the skin barrier in people with healthy skin as well. (Source: http://www.eczema.org/aqeoushttp://www.ncbi.nlm.nih.gov/pubmed/14728695)

SLS is a synthetic detergent (cleaning agent) and surfactant (which means it makes bubbles). It is used in industrial products such as car wash soap, engine degreasers and floor cleaners. But it is also used in a wide range of personal care products such as soaps, shampoos and toothpastes to create lather.  While it is known to irritate skin when it comes into contact with products which have high doses of SLS, it can also damage skin of children with Atopic Dermatits. Usually, regular baby bath products contain Sodium Laureth Sulphate (SLES) which is gentler than SLS and is used to produce foam.

Last year when Aiyana’s skin condition was not improving at all was the time I decided to cut out this group altogether. I found options like Calfornia Baby products which are not only free of SLS and SLES but are also free of preservatives like Parabens. Instead they use coconut derived amino acids in their lotions which act as preservatives but are actually antioxidants; gluconolactone (corn) (and) sodium benzoate, an approved preservative for organic products in their shampoos and body washes. I am sure there are other such products which are equally gentle on the skin but as of now I am sticking to this range since I really do not want to take any chances with her skin care. It has proven to be gentle enough to be used even when her skin was not in a very good condition.

Oilatum Bath Additive Oil

Oilatum Bath Additive Oil

There are other less expensive options which I have used for Aiyana like Aveeno bath products (for e.g. Aveeno Skin Relief Body Wash); Oilatum bath emollientHydromol bath emollient and E45 cream and emollient. These have also worked well for her in the past and I still use a few of them (like Oilatum and E45) off and on both my children depending on their availability and skin condition. The paraffin based bath oils and creamy washes are good options in the summer months in a humid climate in our country. I have used the ointment form for cleansing (Epaderm and Hydromol ointments which are emollients and cleansers- all in one) a few times for my daughter when her skin had become extremely dry during the winter months. But I suppose for most children the bath oils and creamy washes should do the trick.

Products

  • Aveeno body wash is an oat based creamy wash;
  • Hydromol bath and shower emollient and Oilatum bath additive emollients are both liquid paraffin based bath oils (they also have cream based washes)
  • E45 has a cream wash and an emollient bath oil which work as a cleanser; Epaderm is in the form of a 3 in 1 emollient, bath additive and skin cleanser in ointment form
  • There are also other bath additives and creamy cleansers from Cetaphil, QV, Eucerin, Neosporin Ecema Essentials amongs others

    Epaderm 3 in 1 ointment

Availability

  • Aveeno products are usually available in Mumbai based stores like Just Moms (Breach Candy), Green Bell (Juhu), Amarsons. They can also be bought online from amazon.co.uk or amazom.com and a few sellers do ship them to India
  • Oilatum is readily available in most big chemist shops
  • Cetaphil, Eucerin and E45 are sometimes available in the same shops I have mentioned above
  • Hydromol and Epaderm is available in the UK and I buy online from amazon.co.uk or request my friends to get it for me
  • QV and other brands like Neosporin are available in the US and can be bought online through amazon.com but are not shipped by all sellers ( I am trying to figure out a way to get Neosporin Eczema Essentials Products for Aiyana since they are being recommended by quite a few parents)

E45 wash cream

Moisturizing routine

Emollients are found in various forms like creams, lotions and oils and are essentially used to moisturize dry skin.  I have already mentioned in details the moisturizing routine in my earlier post “Moisturizers and Eczema”. There are many products from brands like Exomega, Cetaphil, Avene, Hope’s Relief Cream. I have tried various products at different points in time depending on her skin condition and availability.

But the most important thing is to quickly seal in the moisture after bath while the skin is still moist after being patted dry.  Also, when the weather is hot and moist (mostly the case in Mumbai), I go lighter, meaning I use creams and lotions (if it’s very hot and humid lotions work well during the day); when it’s cool and dry I go heavier, meaning I use ointments or creams to provide better moisturization for my daughter.

I hope this article helps in giving you some basic pointers on the skin care routine that is so necessary for children (or even adults) with eczema to keep their skin healthy and their lives as normal and comfortable as possible. Please feel free to share your experiences and write to me with your questions if any! 

When the going (eczema) gets tough…..(part 1)

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Aiyana and Shaunak in Goa

After Aiyana’s (and our) experience with Erythroderma in September 2012 we decided to take a much needed vacation. We ( Sudip and I, my mother and the kids) went for a one week holiday to Goa during the children’s Diwali break in November 2012. Goa is a small state in India on the Western coastline known as the Konkan region and is famed for its silvery beaches and is visited by tourists from all over the world. While we had a good time overall, her skin condition was just kept under control with oral steroids and immunosuppressants. Due to this reason, as a family we had decided to keep her away and stay away from the sea water and the swimming pool (the chlorine in the water tends to irritate sensitive skin).

Also, since Aiyana had been kept on a gluten free diet after her Ige ( blood allergy test) test had come positive to wheat allergen, it did pose some challenges as far as the food was concerned.  In order to manage her dietary restrictions, I had figured out the alternative food choices and some good gluten free products like Orgran and Bob’s Mill which are available in Mumbai (I wil be writing more on this in a separate post) . The hotel that we were staying in were also extremely helpful in catering to our special dietary needs and used to make us special gluten free parathas/rotis etc from the mix that I had taken with me. Overall I think we managed pretty well considering that in India dietary needs like gluten free/nut free/diabetic/allergy specific diets are not usually catered to in most places yet due to various reasons. As far as gluten allergy (foods containing gluten includes wheat or atta, maida, barley, malt, semolina or sooji) is concerned, it is quite uncommon in India and most people are not well versed with the specifics of this diet.

Under the influence of oral steroids (which we had started tapering) and after introducing an immunosuppressant (Cyclosporin)in September, her skin was much better overall. Itching however never completely went away.  The drug dosage was increased very slowly to the optimum level (depending on her weight) since the doctors did not want to take a chance with any adverse  reaction. With a powerful drug like Cyclosporin, it is imperative to monitor the effects ( increased blood pressure and reduced kidney function amongst others) of the drug on a regular basis. Hence, weekly blood tests were carried out initially after which it was carried out fortnightly and then monthly towards the end. I don’t know which was more traumatic for Aiyana, the skin condition or the blood tests.. This constant monitoring which is required made it difficult for Aiyana to go through with this treatment, but there was no option as such.

After consulting a Mumbai based senior pediatric dermatologist, we also started narrow band UV (ultra violet) treatment or phototherapy for her in November 2012. It is a type of treatment for adults and children with moderate to severe atopic dermatitis (also used for psoriasis) who have not responded well to other eczema treatments. Exposing the skin to UV light suppresses overactive skin immune system cells that cause inflammation and hence can control itching and rashes. The benefits of using phototherapy are that these therapies often work when other eczema treatments have not, and if done properly in a controlled environment and under supervision they can actually have fewer side effects than many of the prescription medicines used for eczema. In Aiyana’s case, her doctors wanted to eventually stop all oral medications and control her eczema with the help of narrow band UV therapy only.

Narrow band UV booth used for phototherapy

Narrow band UV booth used for phototherapy

So, while Phototherapy treatment continued, oral steroids was stopped completely in December 2012 and Cyclosporin (immunosuppressant) was stopped in February 2013. Her skin was overall in a good condition till the time that these medications were being given to her. Phototherapy treatment,  which had been started earlier was then continued as the solo treatment for her till April 2013. Phototherapy as a treatment did not prove to be very effective for Aiyana and her skin condition started relapsing  once again in April and within a few days became extremely dry, scaly and itchy. No amount of topical applications and moisturizers helped to control the same and Aiyana had to be once again put on oral steroids from mid April to stop it from deteriorating any further.

The good thing was that we had already planned for and arranged a trip end of April to meet a well known pediatric dermatologist in Great Ormond Street Hospital for Children and a pediatric allergy specialist in London. We came back to India and started her new medication at the end of May 2013 (I will write about our experience in Part 2 of  this post a lot happened after we came back and it might be an important lesson for parents using immunosuppressant for their child ) .While the results were not exactly what we had hoped for it did clear up some doubts as far as her allergies were concerned. The pediatric allergy specialist did a much more accurate (and painless) scratch test and patch test for her allergies and we were then able to include most of the foods back in her diet barring tree nuts (walnuts, hazelnut, peanut etc).

However, things were to become much worse for us before we got it back under control. There are so many things I wish I could have done differently for her if only I had known what was about to happen. But that is only wishful thinking on my part since it is only in hindsight that we have the perfect vision!

But what I do know is that we all do what we can for our children and that I will never give up finding the best possible treatments and course of action for my daughter. She is such a brave little girl who needs all my love, strength and support to see her through this difficult phase in life.

Our struggle with eczema intensifies

Aiyana with her brother Shaunak in 2011

Aiyana with her brother Shaunak in 2011

It was in October 2011 that we made a trip to Rajasthan for a religious function. For those who are unfamiliar with Indian geography, Rajasthan is a northern state in India with a very dry climate. Aiyana’s skin condition became extremely dry and started cracking even though we were there only for a few days. We came back to Mumbai and started topical medication in adition to moisturizers. We went through the whole gamut of moisturizers including creams and ointments apart from topical steroid creams of all strengths. We also tried out other treatments such as “wet wrapping” in the dry months of December 2011/January 2012 but nothing made her eczema go away completely. For some reason her eczema switch got triggered on and never switched off completely after October.

In June of 2012, Aiyana’s skin condition became very dry inspite of taking utmost care in moisturizing her thoroughly several times daily. We also did an allergy IgE test  (immunoglobulin E) where the blood sample is taken and then mixed with the allergen to see if there is a reaction. As we had expected, she tested positive to a whole host of  allergens like  dust mites, house dust, nuts and but also surprisingly to wheat as well. I did not want to take any chances in the light of the allergy test and with the doctor’s approval put her on a gluten free diet from June onwards. She did not show any immediate improvement with this diet but I still persisted for some more time hoping that her skin condition would improve eventually. It did not.

In the meantime, her itching and subsequently her skin condition became progressively worse. I tried various types of ointments, the highest strenght of topical cortisteroids and intensified her mositurizing routine as well but to no avail. Nothing worked and we reached a point where she was awake throughout the night and her skin started scaling and falling on the bed like black dust due to her constant itching. I can not tell you how painful it was for us to see her go through this agony of non stop itching and hence no sleep for about 10 consecutive nights. Still my husband (Sudip) and I were hoping against hope to see if we could somehow avoid giving her oral steroids and manage with topical applications only. In August 2012, she stopped going to school and we started sitting up with her all night trying to distract her with various activities like drawing, watching movies; anything really to make her stop itching. Her dermatologist and another pediatric dermatologist whom we had consulted, both informed us that if we did not start her on oral steroids soon, she would have to be hospitalized. She had now developed a skin condition called Erythroderma. Ertythroderma is the widespread reddening of the skin due to inflammation of the skin and precedes or is associated with exfoliation (skin peeling off in scales or layers). She was started on oral steroids (Prednisolone) in August 2012 at a high dose (according to her weight) and her skin cleared up within 48 hours! All I could think of was if only we had given her the oral steroids earlier on and spared her all this agony. Aiyana’s skin condition remained in good condition while she was on oral steroids and she was subsequently prescribed immunosuppressants (Cyclosporin) in September 2012 as oral steroids was just a short term medication to control her Erythroderma.

I can only tell you from our experience is that sometimes it is necessary to give oral steroids or some such powerful drug to your child. However, it has to be prescribed by the right doctor, at the right dosage and monitored correctly and regularly at all times. It is thus very important to see the right specialist from the beginning and to stick to one you can trust. It is very tempting to switch doctors and/or medication based on friend’s and family’s recommendations but it may not be the best thing for your child. I have come to realise this over the years of dealing with doctors, family, well wishers who have all tried to help my daughter. I know that I have to stick to her set of doctors who have been with us through all these difficult times and hence know Aiyana so well. They have also done much more for us than just handing us a prescription. Sudip and I have of course taken the opinion of other specialists as and when required. Ultimately, only you as a parent are the best advocate for your child in this fight against eczema.