How I healed my daughter’s eczema (and leaky gut)

In my last post on my daughter’s eczema treatment, I had mentioned once again the Functional Medicine treatment that is helping her heal her eczema from within. In this post I am really happy to say that she is much better than before and her eczema is under control.

She is finally off her immunosuppressive medication after 5 long years of depending on systemic drugs to keep her eczema under control. She has been on prednisone (oral steroid), cyclosporine, azathioprine and methotrexate (at various points in time) to manage her very severe eczema for the past 5 years. For those of you who have been following my blog know that it has been a very long journey filled with a lot of ups and downs. When I started Functional Medicine treatment in 2015 I was convinced that it works but I knew that it would not be easy to implement the changes needed and the discipline that would be required. Countless others have been healed by this treatment for various chronic conditions including the seemingly “incurable” ones like Multiple Sclerosis (read Dr Terry Wahls recovery from a crippling MS here), Rheumatoid Arthritis, Hashimoto (read Dr Isablella Wentz’s story here), Alzheimers (read up on Dr Dale Bredesen’s amazing work here).

The struggle is part of the story

 

It has been worth every second, minute and hour that I have spent on healing her gut from within when I see her soft and radiant skin today

It has been worth every second, minute and hour that I have spent on healing her gut from within when I see her soft and radiant skin today. It has been worth every tear that I have shed when times were difficult and I questioned myself on the path that I had chosen to follow. It has been worth the effort that I had to put in to make the changes in our diet and lifestyle as product availability was poor initially and I struggled with finding the recipes for a different way of eating (gluten and dairy free). It has been worth it when I hear in her voice the delight of sharing her lunch with her friends in school, where her friends look forward to having the very same (gluten and dairy free, unprocessed foods) foods that she used to once eat alone.

Healing a leaky gut

leaky gut symptoms

It was a precious day for me last Thursday as her Functional Medicine pointed out in my daughter’s latest test reports of how her gut has healed slowly from being “leaky” and how this has resulted in her eczema coming under control. Her stool (GI Map) analysis showed that the her gut lining had healed to the extent that the protein called Zonulin was no longer present in high quantities as previously tested over the last couple of years. In other words the tight junction of the gut lining had healed to the extent that it no longer allowed any undigested foods, toxins, bacteria or yeast into the bloodstream and activate the immune system. This had helped calm down her immune system which had helped bring her eczema under control and allowed her to be pulled off her immunosuppressive medication. There were a few things that still needed to be taken care of as had showed up in her urine metabolite ONE test but every single marker had nonetheless showed improvement.

What had worked for us was a combination of lifestyle change and the right nutrition for her. Healing the gut from within also forms a part of the ancient healing traditions of Ayurveda as well as Traditional Chinese Medicine.

Some of the key things that we did that helped us to heal her eczema-

  • Remove trigger foods (like gluten, eggs and dairy), refined, processed and sugar laden foods (baked products, beverages etc) yeast, nightshades to name a few
  • Remove and reduce toxin exposure by switching to safe and eco friendly laundry and dishwashing detergents, personal care products (shampoo, lotion, cream etc)
  • Use therapeutic grade essential oils to manage and prevent infections and skin conditions; I later started using these for a variety of other ailments as a safe and effective preventive measure including minor burns, cuts, headaches etc
  • Add probiotics and fermented foods like kefir/sauerkraut to help increase the ratio of favourable bacteria in the gut against the harmful ones
  • Increase vegetable intake (through soups, juices and meals) as well as fruits (all colours)
  • Add supplements like Glutamine, licorice amongst others to help heal the gut lining
  • Add supplements like cucurmin, NAC, omega 3, phytonutrients etc to boost her antioxidant levels and lower overall inflammation in the body
  • Address the chronic stress of living with eczema with the help of books, emotional support and mindfulness
  • The whole family supported in making these changes without which we would not have been able to make this kind of difference

Difficult roads often lead to beautiful destinations

 

cross road on hillside meadow in mountain at sunset

Eczema remains a part of our life today inspite of what we have achieved. However, as I have mentioned in my earlier posts, it is only a part of who my daughter is and does not define her

Eczema remains a part of our life today inspite of what we have achieved. However, as I have mentioned in my earlier posts, it is only a part of who my daughter is and does not define her. And it is even more true today than ever before. It may remain a part her life but it is not something that she needs to be scared of. She will most likely need to be much more careful of her diet and lifestyle than many others but I believe this will give her a better insight and control over her own health which will actually help her in the years to come. While she has matured over the last few years due to her struggles, she has retained her innocence which gives her a freshness that children naturally possess. I can only hope that these years of learning and accepting the various changes in her young life will shape her into a compassionate, strong and beautiful young woman in the years to come.

As her mother, caregiver and a human being even I have come a long way since I started writing this blog about four years back. Today I would like to share some of the things that I have learned along the way.

  • Remember to always trust your own intuition and instinct where your child is concerned; there is no better advocate for your child than her mother (and father)
  • Try and work with doctors (and other healthcare practitioners) as partners so that you can work efficiently as a team; this is true for chronic conditions where treatment may take years to show any results
  • Food is medicine; nutrition plays a HUGE role in our health whether we realise it or not
  • I have learned not to compromise on the quality and safety of anything that we put in or on our body; buy the best quality and non toxic (if possible organic) produce and consumer care products
  • Taking care of your child’s emotional health is equally important and has a huge impact on their self esteem and confidence; we can unknowingly end up neglecting this aspect of our child’s health while focussing on their medical treatment
  • Self care should be regular part of the daily routine for the primary caregiver (usually the mother) of a child; without taking adequate care of yourself you simply cannot give the best of yourself to your child over a long period of time
  • It is important to include forgiveness as an integral part of your approach in taking care of your child; this is true both for your child as they may fail at times to adhere to the treatment plan and also for yourself as you may make mistakes even if it is unintentional
  • And last but not the least remember to enjoy all the good that is there in your life and treasure each moment with your child; their childhood can disappear in a flash if we are consumed only by trying to tide over the ‘bad times” till “good times” take over

I am thankful for my struggle because without it I wouldn’t have stumbled across my strength

There is so much that has happened in the past few years, so much that as a family that we have covered together and much that we have learnt along the way. While I wish my daughter did not have to go through what she did, it was something we had no control over at all. It took us a while to accept this fact and at the same time be thankful for all that we have. As this year comes to an end, I am grateful to have to come to this point in my life where I have so much to share and an opportunity to make a difference.

As this year comes to an end, I am grateful to have to come to this point in my life where I have so much to share and an opportunity to make a difference

I discovered my passion for helping others in need in the domain of healthcare and have set up my Health Coaching practice. This was done after completing my one year online course from the Functional Medicine Coaching Academy. I also discovered my passion for writing and creating awareness for various health related topics like the ones mentioned below (links given below)

I have also started creating awareness by giving talks to small groups of people and my first presentation is on “Toxins- hiding in plain sight

Toxins- hiding in plain sight 29th nov

Nourish. Heal. Connect

Transparent copy with name

I am collaborating with Dr Amrita Talwar, who is also my daughter’s dermatologist, for a Health Coaching set up in her clinic in Mumbai. At the same time I also have my own practice where I have started seeing clients for various health conditions.

I focus on the following aspects of healthcare-

  • nutrition and hydration
  • exercise and movement
  • sleep and relaxation
  • social relationships and connections
  • mindfulness and stress management

Incase you are interested in knowing more about my practice, please get in touch with me at

Email: anindita@aninditarungta.com

Contact : +917738533913

Fb: @healthcoachinindia

Twitter: @aninditarungta

Heal

The journey of a thousand miles begins with one step

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

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

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

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

social awareness - isolated text in letterpress wood type

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

The complete details are as follows-

Event details

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

When:     17th May, Sunday

Starts:     730 am

Ends :     9 am

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

Contact: Anindita Rungta/ Comprehensive Skin Care Clinique

Email:    walkforeczema@gmail.com

Contact no. +91 7738533913/ +91 22 23810304

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

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

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

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

Dietary restrictions and Ayurveda

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

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

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

The struggle is just a part of our story

Pinteresting with Koka Tawera  Week 3

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

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

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

Eczema Support Group- our first meeting

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

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

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

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

Eczema Support Group in Mumbai- a beginning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Moisturizers and eczema

 

Our long-term relationship with moisturizers

Moisturizing is a critical element in the treatment of eczema. They are found in the form creams, ointments and lotions.

Creams  contain a mixture of fat and water and feel light and cool to the skin. I have used them on my daughter during the hot summer months and during the day in the winter months.

Ointments are very thick and can be very greasy but they are very effective at holding water in the skin and hence are useful for very dry and thickened skin. I use these for Aiyana at night and as a soap substitute while bathing during the dry season.

Lotions contain more water and less fat than creams and can be used for moisturizing the skin in case of mild dryness.

All of the above may be suitable to be used at various points in time depending on whether a person’s eczema reacts to a specific ingredient or ingredients in an emollient, the humidity and the severity of eczema. Also for eczema (especially in case of children) such moisturizers necessarily have to be non cosmetic  and fragrance free since products containing alcohol, perfumes, lanolin, or preservatives tend to cause eczema breakouts.

Ever since we realised that Aiyana has eczema, I have been looking for the most suitable moisturizer for her. In this regard I have noticed that there is no one ideal moisturizer which has suited her at all times. I have changed her moisturizer brands over the years due to various reasons but I am always looking for a better one for her. I have used a type of cream on her earlier known as aqueous cream which is now believed to be more harmful than beneficial due to its sulphate content. In any case we noticed her skin did not get moisturized properly and I stopped using it more than a year back. (Source: http://www.eczema.org/aqueous)

Thus I have used quite a few products on my daughter, some of which are available in India and others are not. These have been recommended not only by her doctors but also by other parents across the world in their blogs and websites. Maybe you will find one here which will work better for your child as well.

HydromolOver the past few years I have used moisturizer brands like E45 cream, Exomega, Epaderm, Oilatum, Aveeno, Eucerin, California Baby, Mustela, Cetaphil, Burt’s Bees and Pure Potions at various points in  time. All these brands are not available here in India as of now. It can be very confusing to know which cream is suitable for your child and even I have learned through trial and error.

Although I have tried all the creams that I have mentioned, the ones which I found to have a creamier consistency ( these have seemed to work well with Aiyana) are the oat based ones like Aveeno and Exomega cream. I have used both of these interchangeably depending on their availability in Mumbai. But I had to shift from oat based moisturizers to others since she tested positive to the oat allergen last June in the IgE blood allergy test.

Another moisturizer which worked well for her last year is the ubiquitous coconut oil. In fact, when she had developed Erythroderma, we had used coconut oil (Parachute brand suited her better than the organic one) since her skin used to burn if we used any creams at all. It worked well as a moisturizer overall and seemed to really soothe her skin. But it was not as effective during the dry months. Also, Pure Potions amongst the ones I have mentioned has a “skin salvation” ointment which is a thick cream and supposed to have restorative properties and has helped Aiyana to some extent.

Currently I am using Hydromol cream on her(I switch to Hydromol ointment during the dry months) which seems to suit her skin and is effective in keeping her skin just moist. I had started using Hydromol Ointment on Aiyana in the dry months (December 2012 onwards) based on a UK-based doctor’s recommendation. I wanted to change her moisturizers to sulphate and paraben free creams (more on this in a separate post) and hence the change. And I have stuck to this brand ever since as it suits her skin. Amongst the other brands of creams, skincare and bath products (bath wash, shampoo, bath emollient) that have worked for her and have been highly recommended by other parents are the organic, sulphate and paraben free ones like California Baby (US), Burt’s Bees (US) and Pure Potions (UK). But these are on the expensive side as compared to the other brands and I have used these sparingly from time to time.

The other relatively less expensive mosisturizing bath products I have used in the past which I have found to be good for her are the fragrance free washes and shower/bath emollients from Aveeno, Oilatum and E45 out of which Oilatum is readily available in India. Currently I use California Baby bath products extensively for both my children since I have found them to be very gentle on their skin, especially for my daughter. ( I will elaborate on her skin care routine and her bath routine separately).  California Baby wash

Availability

  • Hydromol range is a UK based brand and is available online at amazon.co.UK through a seller-Mistry’s Pharmacy (all the sellers do not ship to India) as well as all the BOOTS pharmacies in UK.
  • Exomega range of products by Aderma, Cetaphil, Oilatum are available in big pharmacies in Mumbai like Rakhangi Medical( Worli), Asian Chemist (Bandra West) , Sterling Chemist (Pedder Road) amongst others as well as stores like Just Moms (Breach Candy), Green Bell (Juhu) and Amarsons.
  • Other brands like Mustela, Aveeno, Eucerin, California Baby, E45 and Burt’s Bees products are available in stores like Just Moms (in Breach Candy), Green Bell (Juhu) and to some extent Amarsons.
  • Pure Potions and Epaderm range are available on Amazon.co.uk as well as some other websites but may not be shipped to India.

I have tried to highlight as many options as possible keeping in mind different budgets. I have also compiled a list of the brands that we have used and their availability in Mumbai…I hope this helps incase you do decide to try any of these for your child. I would love to hear from you about what has worked for your child. Also, please feel free to ask me for any clarifications or any further information.