Creating health and not just treating a chronic condition (like eczema)

adult and child hands holiding red heart, health care love and family concept

My last post on our own journey was quite a while back. A LOT has happened since then.

This has been a really eventful year but in a much better sense than it has been over the past few years. This is the year when we saw a glimpse of how eczema can simply fade away when the root cause is treated and the body heals. This is the year when I completed my nutrition and dietetics course but more importantly I also completed my Functional Medicine Health Coach certification from the Functional Medicine Coaching Academy.

All those who have been following my blog know that it has not been an easy road that has led me here. It has been a struggle to say the least not knowing for sure that the treatment and the offbeat path I was following for my  daughter’s eczema would even work or not. This was a treatment which would work from inside out by strengthening her immune and digestive systems by providing the right conditions for her body to heal. That our body has an innate power to heal itself given the right conditions is something that we probably have witnessed to some extent or other but rarely give much importance to.

The path that I chose takes a much longer time, effort and involvement. Because of this reason and also due to a lack of awareness is why we usually seek out conventional medicine as a “quick fix”. I had the same approach to our health till our daughter’s health got affected really badly. 

Don’t get me wrong, antibiotics and steroids and other drugs have saved millions of lives and they will continue to do so. But this same approach does not work well for chronic health conditions. The other problem is that we take our bodies and our health for granted at times due to our busy schedules. And then when things go wrong we usually end up looking for a quick and painless solution.

But I am digressing here.

Eczema and our lives now

First I would like to give an update about the treatment and our daughter’s eczema today. The Functional Medicine treatment that I had started exactly 2 years ago has now started showing some results. It has been a slow and gradual healing journey (which is not yet over) but then I guess it works only when it actually becomes a way of life. I have written various posts on what this treatment is all about earlier and you can check them out.

5 R framework

Functional Medicine treatment in our daughter’s case focussed on healing her gut and the issue of intestinal permeability primarily through dietary changes but also with the help of various supplements. We followed a 5 R framework- remove, replace, reinoculate, repair and rebalance. Over time this has helped her digestive and immune system to recover and become more strong and also balanced. Her skin has showed the results on the outside by becoming smooth and soft. For the first time in many years, we have been sleeping well as a family and through the night. As any parent with a child suffering from eczema will tell you, that is a luxury!

Of course, this does not mean that we can stop doing our work and that her skin condition can never become worse again. Her skin is her weak point in the immune system and may flare up when there is a trigger (in terms of food, toxins, stress etc) and she will always have to be careful. She is still on her immunosuppressive medication, Methotrexate but it is at half the dosage as earlier at 5 mg. Also I need to tell you that we have had a minor setback since coming back from our US trip this month. We spent about 2 months there during the kids’ summer break and even with lapses in her dietary restrictions (excluding gluten which does not suit her at all), her skin condition was at its best in a long time inspite of the sun exposure and other uncontrollable factors during traveling. But ever since after we came back her skin condition became a bit rough and itchy overall. What had changed for her was the environment and everyday stress and her body is taking some time to acclimatise and settle down.

This was a real eye opener for me. This incident showed that even when her diet had improved since being at home, changes in the external environment (read water and air pollution) had a big impact on her skin condition. I immediately ramped up her antioxidant levels to combat the external stressors through a combination of diet (cruciferous vegetables like broccoli, cabbage, cauliflower and other leafy greens like spinach) as well as supplements like vitamin C and cucurmin and Hist D Jr. The last one has ingredients like quercetin ( a natural antioxidant), NAC (an amino acid which is a precursor to one of the most important antioxidant in our body called glutathione) and vitamin C ( a natural immune booster, anti oxidant and histamine lowering vitamin). Her skin has subsequently improved quite a bit and is settling down. I am keeping a close watch on how she is over the next few weeks or so.

On a more personal note 

Over the past few years of dealing with my daughter’s health related problems I realised a couple of things. One, initially I learned all about eczema so that I could help my daughter but after a while I realised that I had a genuine interest in knowing how to create health and apply it to our lives. The other realisation was that I wanted to bring this information to help and guide others in moving towards their own health and life goals. One thing led to another and my quest for knowledge led me to the Functional Medicine Health Coaching course which has turned out to be the perfect fit for me.

I enrolled with Functional Medicine Coaching Academy (FMCA) which is a US based organisation. FMCA is offering this course in collaboration with the main body for Functional Medicine, Institute of Functional Medicine (IFM)I  completed the course last month and I am proud to say that I am India’s first certified FM Health Coach!

Health-Coach-Certificate-Badge_web

“A Health Coach is someone who really listens to you, focusses on what is right with you, supports and guides you”.

As a Health Coach I will thus be providing customised guidance and support for various chronic health conditions on

nutrition and hydration

-exercise and movement

-sleep and relaxation

-social relationships and connections

-mindfulness and stress management

Functional Medicine Health coaching – a new beginning

I am in the process of setting up a clinic with Dr Amrita Talwar (my daughter’s dermatologist) in Mumbai. I will also be having my own practice at the address mentioned below-

Nourish. Heal. Connect

Lodha Supremus

Unit 804, 8th floor,

2 Senapati Bapat Marg, Opp Kamala Mills

Mumbai 400013

The setup for dealing with chronic conditions is quite different from that of dealing with conventional medicine due to the time and commitment required both from me and the person involved. I am in the process of setting up my practice with the help of latest technological platforms relevant to coaching which are suited to dealing with chronic conditions. I am also in the process of customising relevant dietary guidelines for Indian conditions and sensitivities. In case you are interested in reaching out to me for health coaching for any chronic health conditions, please feel free to write to me at

anindita@aninditarungta.com 

You can also reach out to me at

Twitter: @aninditarungta

Fb: @healthcoachinindia

As someone wise had said, “You have got a new story to write. And it looks nothing like your past”. 

This is definitely true for me and it is equally true for you! 

 

 

 

 

 

 

 

 

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

Invitation - eczema Book launch

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

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

Page layouts 1-2

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

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

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

Book launch details

Date: 21st of April, Thursday

Venue: Crosswords, Kemp Corner in South Mumbai

Time: 6 pm onwards

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

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

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

Family, a group experience of love and support

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

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

email at eczemaanindianperspective@gmail.com,

twitter at @eczemainindia 

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

 

 

 

 

 

 

 

 

 

 

 

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

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 tough get going (Part 2)

It has been a very tough year for us and we went through the worst nightmare that any parent can ever face. But in the end, we have come out stronger as a family. And though we still have a long way to go, I am grateful for what we have and I know I will never give up this fight for my daughter’s chance at a happy, normal life.

(Please bear with me- this post is a bit long since there is a lot to cover and I do not want to break the continuity)

Family time!

Family time!

It was end April 2013 when we went for our 2 weeks trip to UK. We had a lovely time overall in London and Wales. The weather was amazing in London and we enjoyed the sun and outdoors. Aiyana was not happy that we took her to meet doctors in the middle of our holiday but she was a good sport about it. She was once again on oral steroids since mid April after being put off any medication since February. Her phototherapy had been going on as the solo treatment, but her skin suddenly started drying up very fast towards the middle of April. And within a few days her skin condition deteriorated rapidly and became absolutely dry and scaly and very itchy. She was immediately put back on oral steroids since that is the only thing that works for her immediately. Her skin condition was thus stabilised and was brought back under control.

In London, we took her to meet an experienced pediatric dermatologist at the well-known The Great Ormond street Hospital for children. We were extremely impressed with the hospital and its facilities catering exclusively to children. He gave us the confidence and hope that he would be able to manage her skin condition with the help of a immunosuppressive drug called Azathioprine. He has been using this immunosuppressive drug to control in children with severe eczema like Aiyana for the past 15 to 20 years. He assured us that it was able to control the eczema in most children and could be given to the children continuously for up to 2 years under strict monitoring. Also, once the drug was stopped after 2 years, the eczema did not come back in many of the children. They diligently carried out a series of tests on the children before starting the medication including an enzyme test called TPMT test.  Apart from the TPMT test, all her test results came back within a week and were all normal. Only her TPMT test result was left and that would take 3 weeks to come.

TPMT is an enzyme which is a critical element in determining the suitability of this drug for a patient and the optimum dosage,. One of the main side effects of Azathioprine is that it could very occasionally and unpredictably provoke adverse effects on the bone marrow. It was seen that patients on this drug who developed this serious and life threatening bone marrow suppression usually did so because they did not have this particular enzyma called  thiopurine methyltransferase (TPMT for short). This enzyme is essential in metabolising the drug in the body and its deficiency in the body could lead to toxicity in the bone marrow resulting in ‘bone marrow suppression’ or ‘myelosuppression’ at a particular dose of Azathioprine.

The bone marrow is the site of production of the most important types of cell in the blood: the red blood cells (RBC), the white blood cells (including neutrophils and lymphocytes) and platelets (important for blood clotting). Since White Blood Cells (WBC) are critical in the body’s fight against infection, any large fall in their numbers can lead to serious infection which can become life threatening. Hence, we had to wait for the test  results to come back before we could begin this medication under her local dermatologist’s care.

In the meantime, we also met a pediatric allergy specialist at London’s Guys’ and St Thomas’ Hospital. He gave us quite a few pointers on her allergies, but more importantly, we were able to finally rule out most of her allergies with a much more accurate (and painless) skin scratch and patch test. These tests confirmed that she was in fact, not allergic to wheat, sesame, soy, dairy and quite a few other allergens which had shown high IgE levels in her blood allergy or RAST test. I was really happy that finally we would be able to remove her dietary restrictions (especially gluten) almost immediately. He also mentioned a home rapid allergen for detection of house dust mite allergen called Ventia™ Rapid Test for Dust Mite Allergen  from US based INDOOR Biotechnologies. I have finally bought it online in the UK and it should get delivered soon. ( I will cover these other measures that I have taken at home in a separate post)

We then came back to India in mid May and waited for her TPMT results to come out. Finally they did, and her results were very much in the normal range. The doctors gave the go ahead for Azathioprine and the TPMT test helped determine the most effective dosage for Aiyana. As per the protocol, she was scheduled for a complete blood test for blood counts (WBC and RBC), liver and kidney functions 3 weeks after the start of the medication. Her oral steroids dosage had already been tapered down gradually and Azathriopine was started on the recommended dosage.

We started the medication and after a week or so I started noticing a darkening of the areas where her eczema was most prevalent inside of her knees, elbows and the back of her neck. Also, her nails became dark as well due to the drug. The doctors were not extremely concerned at that point in time since we were  expecting some changes due to the drug. In any case, we knew that her comprehensive blood test was scheduled for 19th of June and so continued her medication for almost 3 weeks.

And then all hell broke loose.

I remember vividly it was the 15th of June, Saturday when she started losing clumps of hair. And I mean clumps/big bunch of hair just literally falling out of her head every time she moved her head or touched it. I got horrified just looking at it but managed to hide the issue from her at that time. I got in touch with her pediatrician and dermatologist in Mumbai on Saturday and they both got concerned but none of us realised the extent of the problem since there were no other symptoms at that time. I could not reach her dermatologist in London since he was travelling and unfortunately for us even her pediatrician went on her scheduled break to London that week. Her blood tests were scheduled for Wednesday, 19th June, and we knew we would come to know if something was amiss very soon. It was a very upsetting time for all of us just seeing her hair fall out like that and keep on falling. Then she developed fever on Monday evening and since her own pediatrician was on leave, I consulted another doctor who gave her some medicine to control the fever. However, her fever shot up to 104/105 F the next night and we took her to see another pediatrician referred to us by a friend on Wednesday morning.

By this time we knew something was seriously wrong with her since her fever was hardly coming down and I was awake all night sponging her head and body to bring it down. But even at that time we did not realise how serious her condition was. Fortunately for us, the pediatrician took immediate action and sent us for a lot of tests to Breach Candy Hospital directly once we told him the medication she had been on and her very high fever. We did the tests and brought her back home only to be called by the doctor within a couple of hours and was asked to immediately admit her in the hospital. In retrospect, the pediatrician’s quick response was to save her life.

Our nightmare begins

Immediately after she was admitted to Breach Candy Hospital, she was taken to the Surgical ICU by the resident haemotologist since that was the only available place at that time which could take care of her by keeping her in isolation through “barrier nursing” (nursing with utmost precaution with respect to very high rsk of infection).  We came to know that she was suffering from “myelosuppression” which had led to “severe neutropenia”.  These words were to haunt us for the next 1 month and were the very same adverse side effects which were supposed to have been ruled out by the TPMT test. In other words, her bone marrow had effectively shut down and her body was unable to resist any infections and had caught a severe infection as a result. Her counts were

  • WBC- 290/μL                                                                                                                      (Normal range- 5,000-10,000 /μL)
  • Neotrophils (a component of WBC critical in fighting off infections)-  0.00(Normal range 40-75% of total WBC count)
  • Haemoglobin- 9.2 g/dL or  grams per 100 mls                                                       (Normal range- 13-18 g/dL)
  • Platelets- 54   (Unit: x10^3/uL) ;                                                                                   (Normal range – 140-440 units)

Aiyana was put on the strongest broad spectrum antibiotics and anti fungal medicines to help her fight the infection. Since her bone marrow had practically stopped working, she was totally dependent on the antibiotics and antifungal medicines to fight the infection for her.

Life in isolation

She was thus in isolation in the ICU and only the doctors and nurses were allowed to see her and they had to wear masks, gloves and gowns and take utmost precautions so that she did not catch further infections. Even Sudip and I were not allowed to be close to her initially and could only see her from a distance. At night however, they relented and let me sleep on a chair close to the door of the ICU cubicle in my mask, gloves and gown. Initially, we were allowed to go close to her only occasionally when she cried for us in pain or looked for us when she was awake. Most of the times in the beginning she was just too weary and ill from her little body fighting off the infection and the onslaught of medicines and injections and slept through most of the day. From then on for the next 2 weeks for my baby, each day was filled with injections for antibiotics, IV fluid injections, oral medications, an injection directly to the thigh bone to stimulate her bone marrow which was extremely painful. By this time, she had also completely lost her hair apart from a few tufts here and there.

Our life then

I cannot describe the pain and trauma she went through and I cannot describe in words my feelings as I came so close to losing her. My whole family and I just went through the days in a haze and I lost track of the days and other details of my everyday life. I knew only that I had to be strong for her and that I did not have the luxury of breaking down. The doctors tried their best put up a brave front but one could see that they were also extremely worried and not totally confident of the outcome. I truly came to know what the phrase “living one day at a time” meant. Each night I used to pray, hope, fight despair at various points in time sitting in the ICU that the next day would be a marginally better one. The pain and trauma that she had undergone last year was a cake walk compared to this. Through it all I tried to lift her spirits through reading her books, playing her favourite movies on the Ipad. Towards the end she was allowed to indulge in some painting and colouring activities to keep her occupied.

I will never forget the one question that she used to ask me every day and night ” mamma, when can I go home? Please take me home with you”. The days went by in a blur and there were 3 haemotologists working on her case apart from her pediatrician (who had come back to India by then), her dermatologist and all the resident pediatricians at Breach Candy Hospital. I will remain forever grateful to all the doctors and nurses who gave her a second lease of life.

Sudip and I managed to pull through for our daughter’s sake only with the help of our immediate families, friends and well wishers. We had a lot of friends and acquaintances who came forward to help us out by donating blood and platelets which we required on a regular basis. Our friends also kept my son company at home and gave me company at the hospital whenever required.

The turning point

Finally, after a nerve-wracking 2 weeks to the day she was admitted, came the turning point on her birthday on the 4th of July. My daughter’s birthday was the first day after she got admitted that the doctors declared her to be slowly on the road to recovery and out of danger. Thanks to the nursing staff, nutrition and diet team at the hospital who had arranged for a lovely birthday cake, we celebrated the good news. I think I started breathing once again that day and after that it was a very slow but definite road to recovery.

We used to all wait with bated breath for Aiyana’s full blood count every morning to monitor her recovery and  the doctors would adjust the medications accordingly.  She essentially had to undergo blood tests every day for 3 weeks that she was in the ICU and countless other injections including IV fluids. Later, the doctors were to say that it was my darling, brave Aiyana who gave them the hope and courage to fight this infection for her. My 7 year old daughter somehow managed to find the strength to greet us and her care givers with a smile and gave Sudip and I the strength to look for the silver lining when there were only dark clouds around. She was discharged with almost normal blood counts about 4 weeks after she was admitted.

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Life for us today

Today Aiyana has completely recovered from the ill effects of the drug but her eczema remains as severe. We had given her this medicine knowing the dangers since we have had no choice but to help control her extremely severe eczema that restricts her from leading a normal and comfortable life. But inspite of taking all due precautions and following due protocol our daughter’s life was put in extreme danger. As far as the doctors (in UK) have been able to guess, this happened due to a so far undiscovered gene that makes one highly vulnerable to this side effect. We will get her DNA testing done eventually to prevent this from happening to any other child.

If only we had been extra cautious and monitored this drug on a weekly basis instead of after 3 weeks as per the protocol for Azathioprine. But this is all in hindsight as we (including her doctors) truly did what we though was best for our child. As a parent, you can learn from our experience as we have done the hard way. You cannot be too cautious in monitoring any drug that you give your child no matter what the protocol is or what the doctor says.

Since her hospitalisation, her eczema was kept under control with the help of oral steroids. She has been on oral steroids for more than 6 months now and it needs to be tapered slowly since it has its own side effects. She has once again been put on the same immunosuppressant drug Cyclosporin (she took it well without showing any side effects) she was given last year to control her eczema which has remained as severe as before. However, I am continuously exploring other options which I have to take up very cautiously given our recent experience (but that is for another post and another day since this is one is already too long)

I do not give up hope that I will find a better way to control my daughter’s eczema and help her lead a normal life. I owe it to my brave little girl who has shown us what being strong is all about. You should take heart from our experience and continue to fight for your child.

After all, what does not break us makes us stronger.

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.

Our first encounter with Atopic Dermatitis in 2007

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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