“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….

 

 

 

 

 

 

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-

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!”

 

Eczema Support Group meeting for parents

Support Diverse Diversity Ethnic Ethnicity Variation Concept

 

 

I am having the 4th Eczema Support Group meeting on the 21st of February, Saturday from 10 am till 11 am.

This is a meeting for the parents of children who are suffering from moderate to severe eczema. The objective is to provide a platform for parents to share their experiences and learnings with each other. In this meeting we will discuss various treatment options, personal experiences, skin care routine and other related topics as discussed by the members in advance. Infact parents often come up with various suggestions, information in terms of what has worked in managing and improving their child’s eczema which can benefit another child in the support group.
Also, sometimes it helps just to talk to another primary caregiver /parent who is going through a similar struggle of dealing with their child’s eczema.

Topics

  • Diet and its role in eczema/autoimmune disorders
  •  Skin care and bathing routine
  • Phototherapy treatment

Venue- Planet Godrej, Mahalaxmi, Mumbai

For further details and registration please get in touch with me via email at eczemaanindianperspective@gmail.com latest by the 18th of Wednesday.

Our new eczema diet and a heart full of gratitude

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

diet

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

Eczema-Diet-2nd-Ed-Front-Cover-192x300

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

recipes

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

 inspire-31What 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

thank you

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

new year

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! 

 

Products and resources which help to manage eczema

I have been meaning to put up a post of the resources and products (mostly natural formulations) that have proved beneficial in some way or the other in the past few years while treating my daughter’s eczema. These products have been recommended by other parents based on their experiences while treating their child’s eczema. I would like to mention that while my daughter is still on immunosuppressive medication to control her very severe eczema, some of them might prove to be extremely beneficial for your child like it has for many other children.

This is obviously not an exhaustive list by any means and I have listed a few products that have come to my notice and a few other products which I use on my children.

Creams, moisturisers and salves

I have written earlier about moisturisers and creams but these products deserve a special mention. I have put down a few completely natural products which are not mainstream and are mostly formulated by parents of children with eczema after they tried out various mainstream creams and moisturisers but to no avail. Furthermore, all these products are free of steroids, Sulphates, parabens and other preservatives, artificial fragrances, petrochemicals and are made mostly from natural organic ingredients. These products have proven to be beneficial to many children and in some cases, parents have been able to substitute topical steroid creams and moisturisers with preservatives and other chemicals with these natural and organic products successfully.

However, for mild to moderate eczema, you must use the steroid creams and medicines prescribed by the doctor to calm an infection or bad flare up for your child. But in the long-term if you can use a combination of natural moisturizer and other lifestyle and dietary changes to keep eczema successfully under control, that is the best situation one should work towards. I am still trying to figure out what is best for my daughter and how to manage her eczema without using steroids, immunosuppressant and other such powerful medicines and through our own journey it will really make me happy if I can help some other children and their families to cope with eczema.

I have used the first 2 products and coconut oil on both my children. I have found the Purepotions cream to be very effective on extremely dry patches and the organic coconut oil is the main moisturiser for my daughter. Some of the other products have been recommended by other parents of children with eczema and/or adults with eczema who have found relief by using these products. I have also come across some of these products while continuing my search for products to help my daughter and others like her suffering from Atopic Dermatitis.  

However, you have to be careful before using the products for the first time on your child and should check the label to see if your child is allergic to any of the ingredients in any such products.

 

  • Purepotions Intensive moisturising ointment This natural salve was formulated in UK by a mother, Natalie Balmond, when she took matters into her own to find an alternative natural solution to alleviate her daughter’s suffering due to bleeding sores covering 90% of her body. It has Beeswax which acts as a natural antibacterial barrier protecting the skin from external irritants and locking moisture in as well as Hemp  which is extremely rich in essential fatty acids which are often lacking in those with dry skin. One can find out more about this cream and order on their website (they deliver to India) – http://www.purepotions.biz/ and once can also purchase this ointment through other websites like http://www.everythingforeczema.com/skin-salvation.html.

 

 

  •  Chickweed and Calendula cream– The founder of the website, Ms Gail Palmer is another such mother whose daughter had eczema when she was small and she struggled to bring it under control. She developed this product made of chickweed and Calendula especially for chaffed, dry skin like in the case of eczema. Chickweed has been traditionally used by herbalists to help sooth itching, and Calendula to reduce inflammation. She has her own website and blog and one can buy this product on her website http://www.everythingforeczema.com/chickweed-and-calendula-cream.htm

 

 

 

Emily skin soothers

 

  • Baby and adult skin soother from the brand Emily Skin Soothers– Made by an acupuncturist for his daughter’s eczema, this balm contains only natural ingredients. It contains just three chinese herbs in a base of olive oil and beeswax. This product is available on the website http://www.eczemacompany.com/natural-eczema-cream/ and is shipped to India by this website.

 

 

 

  • Odylique Repair Lotion and Ultra Rich Balm by Essential Care– these and other skin care products have been formulated by Margaret and her family since 1980s. She was motivated by the lack of products suitable for her own and her family’s very sensitive and eczema-prone skin and she formulated skin care products based only on organic herbs, plant oils and natural active ingredients. The lotion and the balm are the 2 products made specifically for eczema prone skin and one can purchase their products from their website http://www.essential-care.co.uk/organic-skincare-for-problem-skin/organic-skincare-for-itchy-skin.html 

 

 

LJs natural

 

  • Organic Scratchy Balm and Organic Scratchy Bath/Body Oil by LJs Natural– These products were formulated by Lisa Johnson who had been suffering from severe eczema for a long time after a lot of research and experimentation. The combination of these products and complementary therapy including diet helped bring her eczema under control ever since. The balm is a blend of organic shea butter, avocado oil, evening primrose oil and may help provide relief from itching due to dry skin conditions in a completely natural way. The bath and body oil can be used on children since it is a blend of lavender and chamomile (which are great essential oils good for dry and damaged skin and are very relaxing if used before bed time). This product is now available for delivery to India after I contacted her last week. You can check out her website at http://www.lj-natural.com/my-story/.

 

Organic coconut oil

  • Coconut oil (Organic)– This moisturiser is something we have been using for quite a while now and it has proved to be very helpful especially during the times when my daughter’s skin is broken at places due to constant itching. It is an excellent emollient for not only coating the skin but penetrating it as well, unlike a mineral oil that only coats the skin. This is readily available in India from brands like Conscious Foods, Down to Earth, Kama etc.

 

 

Therapeutic clothing and products

There are some specialised types of products available to help patients suffering from eczema cope with the aches and pains and sleepless nights associated with this skin condition and have to be used in combination to the regular medications and mositurisers. Amongst these, the most obvious and natural ones which help in reducing skin aggravation is the use of completely natural laundry cleaners. I have touched upon this topic in my earlier post – “Eczema- a change in lifestyle”  particularly in relation to availability of these products in our country.

Today I am writing about other products which have been specially formulated to help in reducing itchiness, increasing the comfort level and which might help in reducing the intensity and frequency of flare ups in some people. I have used The Tubifast Garments on my daughter when she still had mild eczema and was advised wet wrapping treatment by her dermatologist. I have also used the Dermasilk full sleeves roll neck t shirt on her and it helped to some extent to reduce her itching at times. In particular, the Dermasilk Elite Girl Brief has proved to be beneficial to my daughter and she wears it to school everyday. It has helped reduce the itching in her groin area to a large extent.

Again, I have shortlisted most of these products based on the reviews and recommendations of other parents who have found these to be beneficial in some way or the other. There must be many more which have been developed  and the good thing is that there are a whole host of products developed specifically to minimise discomfort and itching associated with Atopic Dermatitis and thus improving the overall quality of life for an eczema patient.

 

Dermasilk

  • Dermasilk Therapeutic Clothing–  This is a line of clothing used in the treatment of various forms of dermatitis, eczema and allergic skin conditions and is made of a special, knitted medical grade silk (not regular silk material) by Espere Healthcare in the UK. One can read more about them on their website- http://www.dermasilk.co.uk/. They manufacture full sleeves roll neck T shirts, full length footless leggings, tubular sleeves (for elbows and knees) , underwear (for boys and girls), child gloves, short sleeves T shirt amongst others. I have used the long sleeves T shirt and full leggings for my daughter but intermittently due to various reasons and she was pretty comfortable wearing this at night. You can buy their products on the website- http://www.theallergyshop.com.au/dermasilk-kids/ since this website delivers to India.

 

Tubifast

 

  • Tubifast Garments by Monlycke Healthcare– Tubifast Garments are specifically made to manage eczema using the Wet Wrapping Technique also called Wet Dressing Technique. They are found in various forms for children- gloves, leggings, full sleeves vests in all sizes. Apart from these, Tubifast Patch Wrap,  is used to soothe and protect isolated patches of eczema, especially behind the knees or the elbow and comes in pairs. One can read more about them on their website- http://www.molnlycke.com/patient/en/Products/Wound-care-products/Tubifast-Garments/.  The garments can be ordered at the website- http://www.theallergyshop.com.au/dermasilk-kids/ and they deliver to India as well.

 

 

  • Scratch Me Nots– This is a website where once again a mother, Andrea, developed a product looking for a way to stop her daughter from scratching all the time due to her eczema and wanted to stop the itch- scratch cycle. She then eventually figured out how to bring her eczema under control once her daughter stopped scratching and thereafter they could sleep at nights and decrease the visits to the doctors and the medications. She has developed ScratchMeNot Flip Mittens, ScratchMeNot Flip Mitten Body, Bamboo Bubby Bag, ScratchMeNot Mitten Sleeves all designed for babies and children upto 6 years of age to stop their scratching especially at night. These products are made with an unique blend of bamboo viscose, organic cotton & lycra and one can buy their products on the website- http://www.eczemacompany.com/scratchmenot-flip-mitten-sleeve-formerly-classic/ or the company website- http://www.scratchmenot.com/view-all/.

Skintoskin

  • Skin to Skin biofunctional clothing – These products were developed by a dermatologist especially for babies, children and adults with atopic skin conditions like eczema. These are made from 70% pure cotton and 20% brown algae (seaweed) which has been bonded with silver particles giving the remaining 10%. According to the company, the seaweed extract has natural properties that soothes and protects against itchiness and the silver adds antiseptic properties, drastically reducing the growth of any potentially harmful bacteria on the skin.  The products available are boxer shorts for girls/boys, long sleeves and short sleeves Tshirts, socks and leggings. One can buy these products at  http://www.everythingforeczema.com/skin-to-skin.html (they deliver to India) and their website is http://uk.skintoskin.eu/ incase you need further information.

Diet and eczema

The other aspect of managing eczema that keeps coming up again and again from other parents who have successfully brought their child’s eczema under control and others who have been able to manage their own eczema is through their diet. This is something which my husband and I have been contemplating for some time for our daughter but have not been able to implement by ourselves. For a child, a well-balanced nutritional diet is critical for growth and well being and this is even more true when the child is on a restrictive diet due to eczema, allergies etc.

Fortunately, I came to know of a naturopath based in Mumbai recently and we have approached him to help us streamline Aiyana’s diet to help us to possibly decrease her dependency on medications which keeps her eczema under control currently. Even though no doctor will really recommend a change in the diet for eczema unless it directly affects a person due to his or her allergies, more and more people with severe eczema are going down this path especially when their dependency on powerful medicines with equally powerful side effects becomes too great. Hence the role of naturopaths, natural formulations and home remedies in chronic conditions like eczema.

But you must take the same precautions that you would take before giving any mainstream medicines to your child by finding out about the impact of dietary changes, side effects of any supplements given, regular monitoring required etc. Thus even in the case of managing your child’s eczema through changes in the diet and supplements, you should be clear about why you are eliminating some foods while keeping or even increasing others and not just follow all the recommendations blindly. For a child, a well-balanced diet is very important for growth and the dietary changes should take into account protein, calcium requirements of a growing child amongst other things.

Eczema-Diet-2nd-Ed-Front-Cover-192x300

On this front, after quite a bit of research on the resources available on diet and eczema, I have come across a book called “The Eczema Diet” by an Australian nutritionist Karen Fisher. Twelve years ago Karen’s daughter developed eczema soon after she was born. By the age of two, her daughter’s eczema had become so severe that Karen decided it was time to find her own solution.  Karen successfully controlled her daughter’s severe eczema by formulating a diet plan for her daughter. This book is based on a decade of extensive research of the causes of eczema by Karen Fischer.  It has helped a lot of people to bring their eczema under control and has also helped a lot of parents to manage their child’s eczema in a much more natural way.

I had ordered this book on http://www.theallergyshop.com.au/the-eczema-diet-by-karen-fischer/. This book has recently been delivered to me and I am still going through the same. So far I have read about how it works, the top eczema safe foods as well as the ones which trigger eczema.  In case you have already taken help of this book and tried this diet on yourself or your child, I would be really happy to hear from you.

 

I have tried to bring together in one place a variety of products (creams, moisturisers, clothing) which have helped many children and adults control their eczema and live a comfortable life. Eczema, while not usually life threatening in nature, can really hamper a family’s quality of life on a daily basis since lack of sleep, discomfort, itchiness, medications and their side effects take a toll on children with eczema and their parents alike.  However, there have been a number of parents who have found a way that has worked for their child to some extent or the other and all the trial and error they have gone through has been worth it in the end. While I am also one of those parents still struggling to bring my daughter’s eczema under control with minimal or no medication at all, I would like to live you with a thought that I often have to remind myself on those days when it all seems so difficult-

“In between goals is a thing called life, that has to be lived and enjoyed”- Sid Caesar