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

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

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

Diet and its impact on various disorders

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

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

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

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

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

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

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

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

The Eczema Diet

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

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

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

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

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

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

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

The recipes and menu

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

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

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

When there’s a will there is a way

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

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

 A heart full of gratitude

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

 

 

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

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

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

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

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

A new year, a new beginning

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

From my family to yours–

A Happy 2015!