Tag Archives: Atopic dermatitis

“Not all those who wander are lost” (eczema and our ongoing journey)

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There are many of you who have been following us on our journey as we deal with our daughter’s severe eczema over the years. There have been many ups and downs; times filled with a seemingly never ending despair and other times where we see the silver lining that is hidden behind the dark clouds. We have many nights of sleeplessness, days and nights filled with endless itching and bouts of crying when it gets too much sometimes. There is also THE question which comes up once in a while, “Why me?” I have no real answer to her question which would satisfy her need to know.

But I do know this! 

Through all  these times we have experienced many precious moments filled with small pleasures, much love and loads of fun. We have learned how to appreciate all that we have by focussing on all the good things in our life rather than all that we do not have. This helps to put things in perspective and never fails to bring a smile to our faces. We have also learned to accept that our life and our daily routine is usually quite different from others and we have made peace with it. We simply have different requirements than most other families when we travel, eat out and socialise amongst other things.

We have come to realise over a period of time that this is our new “normal”. Whatever normal family life we had envisioned for ourselves when we had our first child fell by the way side when our daughter’s eczema became a huge part of our lives. We have simply changed the definition of leading a “normal” life and now use one which works for us! 

Our life has thus changed drastically over the past few years in terms of lifestyle, food habits and priorities. I have been sharing these changes with you through my blog for almost two years now. In this post, I have shared the actual changes that we have made to our food habits over the past 9 months or so.

Our diet today based on eczema safe foods

 

I had mentioned in my post last month (https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/) that I would write about her diet in details in my next post and here I am!

It has been roughly about 6 months since I started to follow a very specific diet to control my daughter’s eczema based on the book “The Eczema Diet” by an Australian nutritionist, Ms Karen Fischer. The initial 3 months have been the toughest so far with restrictions on the number of fruits, vegetables and spices amongst other things. I did however prepare her mentally over a period of time prior to starting her on the diet to make this transition as smooth as possible. This is a huge change in lifestyle since food comprises a big part of our lives and this change needs to be handled well especially for a child. Once my daughter understood why we were making these changes and how it had benefited others like her suffering from eczema, she became a willing participant. 

These restrictions are to repair my daughter’s system from within by restricting the intake of the various naturally occurring chemicals (salicylates, sulphites and MSG), allergens, anti nutrients and restore acid alkaline content in the body. Eczema unfriendly food groups like ,wheat, dairy, eggs, sugar etc were all removed even though initially I did give her low gluten foods like spelt flour, rye and barley (no wheat). Eventually over the past few months her diet has been gluten and dairy free, she mostly has organic grains and produce, no refined sugars are added (only much less acid producing maple syrup and golden syrup in low quantities is allowed) and mostly free of preservative/chemical/colouring free (the only exception is the occasional rice pasta).

Simultaneously the acid-alkaline balance in her body is being restored through a higher intake of alkalising foods like moong bean sprouts, celery, beetroot, carrots etc on a daily basis and taking only those acid-forming foods like legumes/wholegrains/chicken etc which are good for skin or are nutritious in other ways. Restoring this acid-alkaline balance is very important because our diets nowadays tend to be filled with mostly acid forming with foods like bread (containing yeast); sugar in processed foods like breakfast cereals, bakery items apart from beverages (fruit juices, sodas etc); corn and corn based foods; cheese just to name a few. While going to an extremely alkaline diet is not recommended, our body needs a healthy and balanced diet to maintain healthy kidney function and prevent weakened bones, muscle wasting and of course the itchiness which is prevalent in those with eczema.

(Further reading resources: http://www.mindbodygreen.com/0-5165/Alkaline-Acidic-Foods-Chart-The-pH-Spectrum.html

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195546/)

The diet is divided into 2 phases- Phase I and Phase II and I have written about them in my earlier post-

https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/

Phase I–  The phase I recipes were very basic and initially I followed most of the recipes given in the book. But I had to adapt some of the recipes a bit to suit our Indian taste and add a few of my own in order to ensure that I could give her some variety even with all the restrictions. She was allowed only garlic and parsley as far as spices and herbs were concerned which proved to be the toughest part about following the diet since Indian food is filled with all kinds of spices. The other difficult part was cutting out all (100%) processed foods and eating only homemade food. Some of the foods that my daughter enjoyed in the first phase were baked fish (pomfret) with garlic in white sauce made of soy milk and brown rice flour; baked chicken in garlic and in a similar sauce; mutton/chicken biryani (or lightly flavoured mutton/chicken in a kind of rice pilaf) with only garlic and broth as the main flavour.

While initially it was difficult for her to forego a lot of her favourite foods (pizza, Maggi noodles, baked items like doughnuts, cupcakes, biscuits and candies to name just a few), over a period of time she has accepted it as a way of life and has made peace with it. In response, her skin condition improved visibly and her itching reduced to an extent. But I should also mention here that since she was started on a new immunosuppressive medication (Methotrexate), the changes would be due to both her medication and diet. But while medication would have helped to suppress and control her eczema, her skin tone has gone back to what it was 2 years back and all the weight that she had put on due to oral steroids simply fell off. I attribute these two significant changes to the changes in her diet.

Phase II – The second phase has been much easier to follow as compared to phase I. Also the fact that I have honed my skills as a baker and chef has helped immensely. I can honestly vouch for the fact that necessity is the mother of invention! All the restrictions that circumstances have placed upon my daughter and as a result on our family have helped me to innovate and become a better cook/baker than I would possibly have ever been otherwise.

Our family is eating a larger variety of healthy foods than ever before with minimal processed foods (so bye-bye preservatives, sugar, chemicals, refined and simple carbohydrates, junk foods) and loads of heart healthy, skin friendly fruits, vegetables and protein (mostly fish and chicken) with natural/organic ingredients. The fallout of all this is that both my husband and I have shed some of our excess weight naturally as a result of incorporating green and healthy juices/smoothies, healthy snacks etc into our own diet.

(You can read more here- https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/)

SInce I had to restrict my daughter’s diet to ones with very specific ingredients, I started making a lot of the desserts/foods like crackers, cookies, doughnuts, cakes etc with eczema safe ingredients at home. Over the last 6 months I have added a lot of variety in terms of foods like jowar, brown rice and brown rice flour, flour, quinoa, sweet potato, sprouts (all kinds), vegetable juices and smoothies. Quite a few of these changes have been for the entire family.

There are however “The Itchy Dozen” foods according to the book which are healthy for most people but do not usually suit those with eczema and is best avoided. Some of these foods that I now avoid giving my daughter are tomato, corn, grapes, dried fruits, deli meats (sausages, ham etc) since all these foods are high in amines, sulphites and MSG (in varying proportions and various combinations). You can read more about these foods at the link given below-

http://www.eczemalife.com/pages/top-12-eczema-itchy-foods-to-avoid

A few suggestion for meals and snacks

Making snacks which are tasty and at the same time eczema safe has been a big challenge but I have managed to adapt and find alternatives which work for us. Working with Indian staples like puffed rice or murmura, flattened rice or poha, lentils and pulses like moong daal, red chana, kabuli chana some of the food items I started making are mentioned below-

  • bhel (a dry mix of puffed rice, potatoes, carrots, coriander leaves, cucumber with citric acid and a touch of cumin)
  • potato/sweet potato tikkas with/without mutton kheema/minced spiced with ginger, coriander, whole cumin (mashed potato croquettes shallow fried in the pan)
  • Moong daal chilla (or crepes with moong daal soaked overnight and then made into a batter) with onions, coriander accompanied by mint and coriander chutney
  • hummus dip(chickpeas, garlic and citric acid with a bit of cumin) and vegetables like carrots or cucumber
  • popped jowar (a delicious alternative to popcorn) is a favourite for both my children and is made pretty much the same wasy as pop corn

Some of the main courses that my daughter enjoys apart from our regular Indian meals are-

  • veggie and rice pasta with loads of garlic and mixed herbs (no cheese) with/without chicken
  • Brown rice and moong daal dosa with potatoes (I am not giving her any fermented products yet)
  • mixed veggies and rice flavoured with broth and a few whole spices (bay leaf, cinnamon and cardamom) with/without chicken
  • I make various soups with eczema safe and skin friendly vegetables like beetroot, sweet potato, carrots, and others like chicken and veggies soup, chicken and pasta soup, mutton stew (occasionally)
  • brown rice noodles (occasionally) with veggies

You can be as creative as you want but the key thing here is to plan ahead. Also, keep in mind that eating healthy does not mean eating only a few foods and having dull or unappetizing foods. Since I have been forced to look outside my comfort zone of eating/preparing the same foods all these years, it has actually opened my eyes to the amazing variety and richness of foods that is available to everyone if one knows where to look.

The availability of different varieties of foods (quinoa, gluten free flours, golden syrup, organic produce, kinds of microgreens and salads, gluten free milk like almond and soya to name a few) both offline through Godrej Nature’s Basket and Foodhall stores in Mumbai and online (gourmetco.in, foodesto.com, naturallyyours.in) have really helped us a lot.  

It’s not a diet, it’s called Eating Healthy

As our daughter now says, she is not following any particular diet as of now but simply eating “healthy”.This is true not only for her but for the entire family. Of course it is not always very simple or easy to eat healthy especially while travelling or eating out even though our daughter’s eating out now is extremely restricted for obvious reasons. But now I realise that after more than 9 months of changing our food habits at home, my husband and I tend to think twice before we order the next cake, sugary drink or buy a packaged food. What started off as a necessity to manage our daughter’s eczema has become a habit for us. It became easier for us to accept and change our food habits once we realised the critical importance of diet in managing chronic illnesses like eczema (I have written about this in my earlier post- https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/).

Also, even though I have expanded her diet and modified it to suit our Indian tastes over a period of time, the book “The Eczema Diet” is what first made me consider food and diet as a tool for managing eczema. I have now come across and follow various other blogs and websites which are dedicated to managing various kinds of chronic conditions through food and dietary changes, reduction in stress levels, yoga and other forms of mind- body excercise etc.

As mentioned in my post (https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/) we will be getting some tests done in London with the help of a Functional Medicine practitioner for “gut health” permeability. Gut health is determined by a healthy variety and a community of about 100 trillion microbial cells in our digestive tract and impacts our physiological, nutritional, metabolic well-being including our immune system. It is now considered to be one of the leading causes of all kinds of chronic illnesses like coeliac disease, irritable bowel syndrome, eczema (now considered to be an auto immune disease), Graves disease, Hashimotos just to name a few and it’s importance is best explained by the image below. I will be wrtiting more on these once we get tests done next month and have more clarity on the same.

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You can do your own research on this and use this knowledge to make an informed decision about the making food and diet an important part of the treatment for your child or anyone suffering from autoimmune disorders/chronic conditions.

(Image source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065426/figure/F1/)

(Further reading: http://www.nih.gov/researchmatters/october2014/10062014autoinflammatory.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3667473/)

Not all those who wander are lost

And so it is with us. Our journey is long and is filled with twists and turns and Atopic Dermatitis seems to be our constant travelling companion whether we like it or not. So over a period of time, we have learned to gracefully accept these circumstances to make our journey more comfortable and even memorable. This is true even though all the while we are constantly trying to manage our daughter’s eczema in ways which are less harmful to her in the long run. Whether we realise it or not, sometimes it is the journey which teaches us a lot about our destination….

 

 

 

 

 

 

The journey of a thousand miles begins with one step

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Our family’s journey began some years ago when our daughter was diagnosed with eczema (Atopic Dermatitis). Since then we have come a long way. It has motivated me to work towards increasing awareness about this condition in our country where it is very low. This will not only help my daughter but also countless others sufffering from this condition who have to deal not only with Atopic Dermatitis but also with a society which is not sensitised to this condition and hence increases the level of suffering and pain in myriad ways.

In this regard, the first “Walk for Eczema” in Mumbai was organised by the Eczema Support Group for Parents and my daughter’s dermatologist Dr Manish Shah (under the aegis of IADVL SIG Pediatric Dermatology ) on the 17th of May, Sunday at Bandra West. It was attended by our family, friends and other supporters as well as some prominent dermatologists from South Mumbai. We were able to reach out to many who were attending the Equal Streets Moevement in Bandra and pamphlets about eczema were handed out to them in three different languages.

The success of this walk is measured not only in terms of the number of people we were able to reach out to directly but also in terms of bringing together for the first time parents, patients and dermatologists who walked hand in hand for this common cause. This event has thus helped to pave the way for such future events which will go a long way in increasing awareness in our country.

Our first “Walk for Eczema” in Mumbai on the 17th of May, Sunday

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social awareness - isolated text in letterpress wood type

I am really happy to announce the first “Walk for Eczema” which has been organised in Mumbai on the 17th of May, Sunday. This has been organised in collaboration with IADVL SIG Pediatric Dermatology(an Indian body for Dermatologists and other skin conditions). This is the first such event of its kind in our city and a part of my ongoing endeavour to increase awareness about this condition in my country.

The complete details are as follows-

Event details

Where :   Equal Streets, HP Junction on Linking Road, Bandra(W)

When:     17th May, Sunday

Starts:     730 am

Ends :     9 am

Organized by: IADVL SIG Pediatric Dermatology and Eczema Support Group for Parents (Mumbai chapter)

Contact: Anindita Rungta/ Comprehensive Skin Care Clinique

Email:    walkforeczema@gmail.com

Contact no. +91 7738533913/ +91 22 23810304

There will be a brief Q&A session at the end of this walk with a senior pediatric dermatologist based in South Mumbai.

Please let us know incase you are interesting in joining us or know anyone who would benefit from this event.

You are what you eat (eczema and food)

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

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

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

real food word cloud

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

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

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

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

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

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

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

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

Our relationship with food

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

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

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

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

Stories that inspire me

inspiration word in metal type

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

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

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

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

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

You can read her story here-

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

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

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

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

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

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

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

The long and winding road

cross road on hillside meadow in mountain at sunset

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

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

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

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

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

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

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

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

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

 

Our tryst with Ayurveda and our first Eczema Support Group meeting in Mumbai

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In my last couple of posts I had mentioned that I was trying out Ayurveda as an option of treatment for my daughter simultaneously with the immunosuppressive medication Cyclosporin that she is currently on. She was started on Ayurveda treatment in May and it carried on during her summer holidays till the end of June. She was given a mix of medicines  in the powder form ( made of natural ingredients) and others in the liquid form. In all there were quite a few medications before and after breakfast, evening snacks and dinner, and it is to my daughter’s credit that she took all the medicines without much fuss at regular intervals.

Dietary restrictions and Ayurveda

However, the more difficult part was to live with the many and varied dietary restrictions on a daily basis.  Foods which are restricted not only include food groups like fermented food products ( curd, yogurt, dosa, idli, cheese etc) ,cold foods like food straight from the refrigerator, ice creams, cold drinks or juices but also citrus foods like tomatoes, sweet lime, lemons; vegetables like potatoes, cauliflowers, leafy green vegetables like spinach; processed foods like cakes, pasta, noodles containing maida (refined wheat flour), fish and meat, cold cuts of meat, canned foods– the list was pretty comprehensive. Due to the fact that Aiyana was on vacation and at home, we did manage to follow almost all the restrictions but it was pretty tough for an 8 year old to remember and adhere to these restrictions on a daily basis. I guess given all that she has been through in the last couple of years she has matured beyond her age and understands what needs to be done even if she does not like it at all.

But inspite of following this treatment for almost 2 months, there was no marked improvement and infact her itching became progressively worse and she was unable to sleep throughout the night. It was once again a most difficult and stressful time for all of us and most of all for my daughter. As per our follow up which was scheduled in early July, I took her back to the institute and this time she was met by their skin specialist as well. Upon hearing that the medicines had made her very itchy, he changed most of her medicines and asked us to give it some more time.

Unfortunately, by that time Aiyana was extremely uncomfortable and I stopped all the ayurvedic medicines by second week of July. After showing her to her regular doctors (pediatrician and dermatologist), she was put on a low dose of oral steroids. Infact over the last couple of years we have noticed that whenever her skin has flared up or seems to be out of control even with her regular medication and routine, oral steroids is the only medication which brings it completely under control. Even cyclosporin has not had that effect on her in the past year that she has been on that medication. After consultation with her doctors, we were advised to increase and try a higher dose of cyclosporin (along with the oral steroids) for the next couple of months to see if that made her skin stable only after which it would be decided to change her medication.

The struggle is just a part of our story

Pinteresting with Koka Tawera Week 3

So this is where we are now, still looking for a stable alternative to her ongoing medication. We have our ups and downs and it has been a long journey for us since Aiyana was diagnosed with Atopic Dermatitis. But in the end, she is so much more than a child with eczema. Eczema and all the problems associated with it are just a part of our family’s walk through life.

There was always a risk trying out alternative medicine but I wanted to explore that option incase it proved to be a viable one for her and did not have the kind of risks associated with the side effects of the medication she is on currently. But the biggest risk in my opinion is that there is not much regulation with regards to the manufacturing of medicines. Unlike in mainstream medicines like steroids, immunosuppressive medication and other such medicines, ayurveda and other alternative medicines like homoeopathy are not that regulated. Thus I was not 100% sure about the purity of the medicine (especially since some of them were manufactured by little known Ayurvedic pharmaceutical companies in various parts of our country) and hence the efficacy and this always niggles at my mind.  I am not sure how this issue will be resolved in the near future and but this remains in my mind a stumbling block for ayurveda to become integrated with mainstream medicine. But there are ways to follow some of the simpler natural remedies prescribed in ayurveda by sourcing the natural ingredients and using them as home remedies as has been the case in many Indian families over the ages. In any case, this decision was taken out of our hands due to my daughter’s skin condition and I now look ahead in our family’s journey in dealing with eczema.

What kind of experience have you had in treating eczema with ayurveda (If any)? Please do let know your opinion on the same!

Eczema Support Group- our first meeting

I had mentioned that I was conducting the first Eczema Support Group meeting in Mumbai end of July. We finally had our first meeting early August and there were 4 of us, all mothers of children with severe eczema  residing in Mumbai who came together to share our experiences, stories, issues and most importantly our pain of watching our child suffer. Going ahead we will be sharing information and our own unique experiences in dealing with eczema, we will also have  experts talking to us on various topics associated with Atopic Dermatitis amongst other things. Incase you know someone residing in Mumbai who has a child suffering from moderate to severe eczema and wants to join our group, do ask them to get in touch with me at eczemaanindianperspective@gmail.com.

I had planned to write about some products that have been beneficial to my daughter and other children with eczema over the years but I realised that it is better if I write separately about that in my next post. Apart from natural supplements, moisturizer and creams, special therapeutic clothing (some formulated by other mothers whose children had severe eczema), there are some amazing books/CDs for children available  across the world which are immensely useful in dealing with eczema directly or indirectly by reducing the stress associated with this condition. These do much more than just provide information, they inspire and motivate children (and adults) in the face of eczema and other such difficulties. I will be putting up a post on this soon!

In the meantime, I leave you with a thought which is something that I try to live by and instill in my children-

“Happiness is not the absence of problems; it’s the ability to deal with them”– Steve Maraboli

Eczema Support Group in Mumbai- a beginning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our introduction to Ayurveda

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

A rigorous process

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

An interesting change

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

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

Our goal

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

The good, the bad and the ugly

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

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

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

Mindfulness Meditation

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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

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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.

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

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

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

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

Hobson’s choice

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

Azathioprine and cyclosporin- 2 different types of immunosppressant drugs

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

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

Side effects

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

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

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

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

Regular and strict monitoring 

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

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

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

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

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

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

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

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

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

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

Our first encounter with Atopic Dermatitis in 2007

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Eczema- an Indian perspective

My daughter, Aiyana was a chubby 1 year old child when we first realised that her skin was not exactly what is called “baby soft” that we usually read or hear about. Her baby skin was  quite rough in texture that somehow never quite felt smooth to touch. This was the first time we had heard of  this skin condition  which is called Atopic Dermatitis (or Eczema as it is commonly known)since till then we were not aware of this skin condition.

Aiyana when she was 1 year old

We also came to know that certain foods tend to trigger inflammation of skin for children with eczema. Through trial and error  we came to know that our daughter was allergic to eggs, dairy and though we did not give her any tree nuts (hazelnut, walnut, peanut, cashew etc) we avoided all of these all the same. This dietary restriction did help in alleviating her skin texture…

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