Category Archives: Uncategorized

Our new eczema diet and a heart full of gratitude

Posted on by

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! 

 

A brief summary of our 2nd Eczema Support Group meeting in Mumbai on the 13th of October, Monday 2014

Posted on by

support group

I have started a Eczema Support Group in Mumbai for the parents of children with moderate to severe eczema. We are having had our 2nd Eczema Support Group Meeting on the 9th 13th of October, Thursday Monday 2014 at Mahalaxmi, Mumbai. We had our first introductory session in early August and will be having our second session next week. The first one was introductory in nature where as in the second one I am planning to discuss a couple of topics one of which is the foremost in every parent’s mind.

Agenda: Treatments for eczema and diet

All those residing in Mumbai who would be interested in joining us please get in touch with me via email and I will mail you the details –

eczemanindianperspective@gmail.com

As C S Lewis said ‘Friendship Group is born at that moment when one person says to another ”  What! You too? I thought I was the only one” 

Products and resources which help to manage eczema

Posted on by

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 

 

 

 

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

Posted on by

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

Dietary restrictions and Ayurveda

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

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

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

The struggle is just a part of our story

Pinteresting with Koka Tawera Week 3

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

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

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

Eczema Support Group- our first meeting

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

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

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

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

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

Posted on by

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

Our introduction to Ayurveda

p_0010

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

A rigorous process

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

An interesting change

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

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

Our goal

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

The good, the bad and the ugly

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

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

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

Mindfulness Meditation

mindfulness

To this end I have been reading about a form of stress reduction technique called ” Mindfulness Based Stress Reduction”  (MBSR) program developed by Dr. Jon Kabat-Zinn at the University of Massachusetts Medical Center. It is meant to work by making one more “grounded” or “aware” of the present moment and simply means paying attention in a particular way: “on purpose, in the present moment, and nonjudgmentally” as described by Dr Kabat- Zinn. In this post, I will be just touching upon this topic since we have just started following the same ourselves.

My goal in trying to incorporate it in our daily life is very simple – to help my daughter reduce her stress and frustration levels and hopefully cope with her medical condition better with time and practice. The good thing is that one does not have to be a Buddhist to practice this though it has its roots in Buddhism, Taoism and yoga. Mindfulness is the art of conscious living so that you live a life being who you are already and not try and be someone that you are not. Hence, one’s religious beliefs does not interfere with this practice.

Meditation and coping

download

I am using the book and CD combination- “Planting Seeds: Practicing Mindfulness with Children“ which is based on Thich Nhat Hanh’s (a Zen Buddhist monk) thirty years of teaching mindfulness and compassion. They are designed to help relieve stress, increase concentration, nourish gratitude and confidence, deal with difficult emotions and improve communication.

While we have just started practising this, Aiyana has been enjoying our daily sessions of “deep relaxation” before bedtime since it is helping to calm her (and me) down quite a bit and relax. While it is too early to comment on the results of practising this, I can say that it has made a slight improvement in her sleep quality. And anytime that she wakes up feeling itchy, the music is soothing enough to lull her back to sleep most of the times. I am also planning to use another well-known book for practising mindfulness meditation with children – “Peaceful Piggy Meditation” by Kerry Lee Maclean for the same purpose.

Be happy for this moment, this moment is your life

And in the end, this is what matters. How well we lived our life, how well we loved, how we counted our blessings along the way; how we learned to accept the things we simply cannot change and faced our most difficult moments. This is the lesson I strive to teach my children, one lesson that I am myself learning every day of my life.

 

 

You can only fill the glass of another….if your pitcher is full ( a note to the parents of children with eczema)

Posted on by

Seasons greetings for the new year!!  A new beginning…a new year filled with HOPE

It has been a while since I last put up a post. I have been traveling a bit and have also been a bit tied up with my younger brother’s upcoming wedding later this month. Having said that, I have missed penning down my thoughts since I have come to realise that there is a certain therapeutic value in sharing one’s joys and sorrows with other like minded people. It definitely makes the load one carries a lot lighter.

There are a lot of parents out there like me who are struggling to take care of their child and who are sometimes overwhelmed mentally and physically. And irrespective of whatever the medical problem is, I know only too well how helpless one feels to see your child suffering. But oh what a feeling it is to see one’s child get better and see the innocent smile on her face once again! I was lucky to have been given a second chance with my daughter last year and I do appreciate this gift, a lot of other parents are not as lucky.

So far so good- an update

The good news is that my daughter’s eczema (Atopic Dermatitis in her case, there are different kinds as I have discussed in my earlier posts) has been kept well under control for the past couple of months under the immunosuppressive drug, Cyclosporin. So the influence of oral steroids (prednisolone) has been waning and the sudden spike in her cholesterol levels last month (one of its side effects) has now receded. However, these kind of powerful drugs can usually only be given for a limited period of time and that also under strict monitoring via regular blood tests. Blood tests are thus a regular feature in our house and I have managed to have a gentle mannered phlebotomist who makes the process as painless as possible.

We will have a medical review coming up in a few months time when it will be seen whether the medication can slowly be phased out or another drug has to be introduced, but that’s a worry for another day. Till then I intend to keep trying to figure out if there is another way to help get Aiyana’s eczema under control.

Taking care of oneself

A lot of times, we as parents get so busy taking care of our children, we forget to take care of ourselves. This is especially true for those whose children have chronic health issues. But it is really important that you as a parent (parents are usually the primary caregivers in the case of their children) take care of your own physical and mental health at the same time. This is of course easier said than done and close to impossible in times of crises, but should be definitely taken seriously at most other times. If we have to be our child’s source of constant strength and love during difficult times, it is all the more important not to neglect ourselves.

It doesn’t get easier, you just get better

And I know exactly what I am talking about. My 6 year old daughter was in the ICU for 3 weeks last June out of which the first 2 weeks were critical. There was only one place I wanted to be and that was by her side everyday. My husband was partly in the hospital and partly taking care of our 3 year old son at home and our family and friends were our source of strength and support during that difficult phase. However, I was the one keeping vigil by her bedside every night since I needed to do it for her as well as for myself. I was extremely stressed and upset and hardly got more than a few hours of undisturbed sleep at a time amidst all the flickering lights and constant beeping of the monitors in the ICU. But somehow I kept going night after night with just a few hours of rest the next morning.

I now realise that my regular schedule of exercise in the past few years played a major role in enabling me to continue to be there for my daughter for those 3 weeks without any break. Regular exercise in any form is  a must to build stamina and ensure you are in good health to provide the best care for your loved ones.

The time to relax is when you don’t have time for it

This is true especially in times of crises when there is not even enough time to breathe properly. However, that is precisely the time when you have to remain as calm as humanly possible to make the best possible decisions in the interest of your child and provide the best support possible. The time when our children need us the most is usually the time when a parent is under tremendous stress and reels under the responsibility that comes with being a parent.

When I used to see the small form of my daughter lying in the ICU bed, the weight of the responsibilities of being her mother were the heaviest. I did not have the luxury of breaking down at any point in time. It was only my passion for reading which helped me relax and destress myself for a few minutes at a time each day. I used to read sitting next to her at night just to take my mind of all our problems and uncertainties even if just for a short while. There were of course times when my mind used to be crowded with all the negative possibilities and a feeling of helplessness, but relaxing even for a short while at night helped me prepare myself for the next day. It helped me to cope with the same problems just a wee bit better, but sometimes that itself makes a lot of difference.

Find your own way of relaxing, it is not only worth it but also essential for a caregiver.

I cant promise

 I can’t promise to solve all your problems, but I can promise you won’t have to face them alone

This is my promise to Aiyana and one I know that I will always strive to keep. A lot of times it is not possible for a parent to make our child’s suffering go away, but we can make sure that our children are not alone in their fight against eczema. Eczema differs from a lot of other medical problems in the way it affects a child’s physical appearance, nutrition, lifestyle, sleep and can be triggered by a host of factors like humidity, external irritants like house dust, perfumes, detergents, stress amongst others. This makes it difficult to control this condition in many cases and hence needs much more than just the medicine prescribed by the doctor unlike in other childhood diseases like chicken pox, measles etc.

The process of controlling and improving eczema can be quite labour intensive apart from being disruptive to one’s normal way of life but needs to be done nonetheless. A lot of long term lifestyle changes (including food related ones) may be required apart from a time-consuming skin and bath care routine for the child on a daily basis ( I have discussed both in my earlier posts- “Eczema- a change in lifestyle” and “Bath time! ( And skin care routine for eczema)”). Of course, the hardest part of being a parent is watching a child go through something like this and not being able to fix it for them…and just like me I know you are doing all you can.

“I may not be perfect, but when I look at my children I know that I got something in my life perfectly right” 

How true! Sometimes, in chronic and severe medical conditions like Atopic Dermatitis the condition makes itself blatantly visible. It manifests itself in the form of rashes, thickened and dark skin and in severe cases, weepy patches and lesions. It is easy for a child to become a target of ridicule and taunt like my daughter has been subjected to and it can have a negative effect on a parent as well. But to each of us blessed with a child, we know that our child is perfect in our eyes and will be loved no matter what their physical appearance (on which our society places such an importance).

So I hold my head up high and I am teaching my daughter do the same every day, for the rest of her life. I encourage my daughter to lead a normal life and hold her hands on those days her self-confidence falters.

At the end of the day, love is learning how to take excellent care of yourself so that you can take phenomenal care of the ones you love.

Eczema and diet (gluten free)

Posted on by

Eczema has been known to be affected by diet in many cases especially in the case of children. Eczema can be triggered or made worse by many things like house dust mites, excessive humidity or dryness, pollen, stress or by eating certain foods amongst others. In the case of many children with severe eczema, food maybe one of the causes but in the case of a few children it maybe their only trigger.

When Aiyana’s eczema became worse in June 2012, we did her blood allergy test which looks for specific allergen-related antibodies (IgE or immunoglobulins which is one of the 5 sub classes of antibodies) in order to identify her allergy triggers. I was really hoping that by finding out her food triggers we would be able to control her eczema which was worsening and slowly spiralling out of control. But I also knew that food is very rarely the only trigger and hence changes in diet alone cannot by itself help control eczema without the support of a good skin care and moisturizing routine.

Her results came back positive for most of the 29 allergens we had tested her for  showing high IgE levels for tree nuts (like hazelnuts, walnuts), house dust, sesame seeds. Her total IgE levels were higher than normal and surprisingly the test showed positive results for wheat, oats, lemon as well. As her pediatrician put it so well when she explained the results to us- “ Aiyana’s skin is like an angry person, such a person will react to most triggers at this point in time”. By the time we had got these results, we had seen her skin condition deteriorate continuously since October 2011 in spite of trying out the entire range of moisturizing and topical corticosteroids arsenal as and when required but to no avail. I decided to control her diet for the next year or so in the hope that it would help improve her eczema since it has seemed to help some other children. Since surprisingly for us she had a high positive outcome for wheat in the test, I really hoped that it might have been a key trigger for her eczema becoming worse over the past year or so.

In any case I was determined to leave no stone unturned in trying to control and improve her eczema. Hence I made certain changes in her diet, the most difficult part of which was making it “gluten-free”. I have decided to share my learnings that I gained by doing a lot of research on this unique diet, its availability in our country and ways in which I made sure Aiyana was able to follow this at home and more importantly outside as well.

GF

LUCKILY for us, we did a much more accurate skin scratch test for her in May this year and gluten was ruled out as an allergen and slowly we were able to introduce wheat and other forms of gluten without any issues. 

Gluten free??

In a country like India where allergies and diet restrictions are not very common and awareness is very low, the challenges of following a “gluten free” diet increases manifold. And when I had to explain dietary restrictions to a 6 year old child (and to others around us) and ensure that she follows it, I had to  make a lot of changes to the way we thought about food. Gluten is the protein complex found in wheat, barley and rye whereas oats is inherently gluten free but invariably suffers from cross contamination with other such grains. It gives elasticity to the dough, helping it keep its shape and And it is found in, well almost everything and I mean EVERYTHING!! I never knew it was all invasive till I had to list down foods that did not have gluten.

All the breads, pastas, noodles, Maggi, cakes, desserts, all the kinds of Indian breads like naans, rotis, wafers, biscuits and a host of other child friendly and convenient foods were a complete NO NO. The positive things about this was that a) it automatically made me look for healthier alternatives and more home cooked foods without high levels preservatives, sugar, fats and salt b) my daughter did not have coeliac disease which is an autoimmune disorder affecting the small intestine which has reduced inability to absorb nutrients from the food and only a COMPLETELY Gluten free diet helps. In fact, I had not even heard of this condition till I started to find out more about gluten free diet. Even now I have heard of just once child having this condition which is still comparatively rare in India. For a person having Coeliac disease, even a very small exposure can lead to seizures, osteoporasis and growth issues in children. In my daughter’s case I did not have to worry so much about cross contamination in the kitchen or the dust from wheat, maida (refined wheat flour) affecting her health since it did not affect her to that extent.

We never truly realise what we have till we have till we have to live without it

However, food was to become a huge challenge for us. I changed our flour options from wheat to others like jowar (sorghum), bajra (pearl millet), ragi (finger millet) but not completely successfully. For a child who is accustomed to the taste of wheat, it is a HUGE change.And it is definitely easier said than done. I started making pancakes, chapatis (a type of Indian bread) out of jowar, unsuccessfully tried to give her other food options made of ragi and bajra. She just didn’t like the taste. Luckily, a diet followed predominantly in southern India is made of rice and includes dosas, idlis and uttapams (a kind of crepe, a steamed preparation and a kind of pancake with toppings respectively) and which my children love. Also since one major staple food is rice for us (especially true for Bengalis like for me from the eastern part of India), I started giving a lot of snacks made out of rice for her school lunches and the like.

Variety is the spice of life

True to my nature, I did some more research and found out gluten free recipes through some amazing blogs and websites like www.glutenfreeconfessions.com and glutenfreegoddess.blogspot.in (the first one is my favourite one). They helped me get started on a journey which was different from any other. I learned to appreciate how difficult it is for people who are on restricted diets. I also made sure that for most parts, my whole family followed the same diet as my daughter. I also figured out ready mix gluten free products which were available in India and how to get them if they were not. This opened up a lot more options for us which were also tastier and convenient as a whole. I got bread, pancakes and other flour mixes from Orgran, Pamela’s products and Bob’s Red Mill, Schar from various places. Orgran as a brand was the only one readily available in Mumbai at that time. ( There are of course many more such brands available world wide to cater to a vast segment but I have not used any of those other brands.) But thankfully things have changed for the better in the last year and a lot more products are now available in India both offline and online. I am listing some of the products and their availability in our country-

  • Orgran Gluten free products – Foodhall at Phoenix Mills, Godrej Natures Basket in Mumbai
  • Bob’s Red Mill Natural Foods– Foodhall at Phoenix Mills
  • Bob’s Red Mill, Schar and Orgran products are also available on websites like http://www.healthyworld.in/,  http://www.gourmetco.in/ and http://www.foodesto.com/ which deliver all over India
  • Pamela’s Products are not available in India, I had to arrange for them from US

orgran

schar

I have used all of the above mentioned products apart Bob’s Red Mill. My favourite was the bread mix from Pamela’s Product which turned out quite close to a regular bread and almost as tasty. For someone like me who has never had to bake bread in her life, the end result was pretty decent as compared to when I was trying to make the same from scratch. However, I did manage to bake bread, cake and the likes from scratch using gluten free ingredients with mixed results. I would like to also list the ingredients that are available incase you are willing to try your hand at this as well-

  • Zero G – An Indian brand which has products like potato starch, corn starch ( not corn flour), GF atta and maida mix for rotis etc and other basic GF grains like sorghum etc. It is available in large grocery stores and online in the websites mentioned earlier

zero g

  • Conscious Foods– another brand which has all kids of organic GF grains and flours like bajra, ragi, jowar etc
  • Bob’s Red Mill– Guar gum and Xanthan gum powder, both of which are essential to emulate the binding property of gluten in regular foods

A child’s dilemma

However, the most difficult part was to ask a 7-year-old to stop having what she had been used to eating so far and it was worse when she had to attend birthday parties and other social events. I had to prepare her mentally and then send some homemade cakes and even other foods so that she could eat something at the birthday parties. In most cases, I spoke to the hostess and asked them to have a couple of options for Aiyana if possible (and even had to refrain from sending her to a few of them).  Also in India, since these kinds of allergies are uncommon, there are hardly any options in terms of restaurant foods, bakeries and at social events (apart from the South Indian variety). It was a difficult time, but she knew that she was not supposed to eat a wide range of food and she did refrain from eating them. I started baking a lot more at home and even managed to make, cupcakes, muffins etc for her with the help of some of baking mixes which I sourced. Luckily for a mother like me, there are a lot of like-minded people in the world who have shared their gluten free recipes and other ideas which really helped us to adjust to this challenging diet.

kites

And finally, a kite rises highest against the wind, not with it

And so it is with my daughter. While I would certainly not wish for her or anyone else to go through these challenges which seem to cross her path ever so often, most of the times we do not have a choice but to face them head on. While my daughter has been put back on a regular diet from June this year, the 11 months or so when she had to follow this diet was a difficult time for her since it added to the challenges she faced already due to her severe eczema.

But I can already see the strength in her which helps her to lead as normal a life as possible and her will power which has increased by leaps and bounds in the past year or so.

I know now the she has the strength to not only rise against the wind but to soar to dizzying heights …