Tag Archives: support group

The only impossible journey is the one you never begin….( we are on our way)

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Man on top as silhouette in mountain

A new year has begun and we are two months into it already! I know I have been missing in action lately and I am really sorry. Having said that, I am happy to say that there are lots of developments at my end. A few of these are to do with my daughter’s treatment and a few others are associated with related topics. So you see, I have a lot to share with you.

First I would like to mention a few things which are uppermost in my mind. I would like to begin my first post this year by expressing my gratitude for all that I have and enjoy. I am really grateful for all the precious and memorable moments spent together as a family. I am also thankful for the constant and untiring support provided by my daughter’s doctors and by our extended family. As a family dealing with a child with a chronic condition, we know only too well how difficult it becomes from time to time, how very exhausting. It is only with all the support that we get that we have managed to come this far.

While it is very difficult to witness the pain and suffering that my daughter has to endure on and off due to her severe eczema, we make sure that as a family we do not forget to have fun, to do the small and big things which we enjoy. Those of you who have been with us from the beginning will know that we have come a long way in the past few years.

Confirmation of a “leaky gut”

leaky_cycle-716x675

(Source: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/)

In my earlier posts I have shared with you that my daughter is currently on a treatment based on Functional Medicine principles. I have written in details about Functional Medicine in my earlier post (https://eczema-anindianperspective.com/2015/09/10/the-functional-medicine-and-gut-health-approach-to-managing-chronic-conditions-including-eczema/) and you can find out more about it for yourself using the links given in the post. My daughter has been on this treatment for a bit more than 3 months now and we have just done some tests for her to see if there are any improvements. But before I get to that in my next post, a bit more about these tests which confirmed that she had a gut health issue and determined her course of treatment.

The whole approach of this treatment is to heal the gut (or small intestine), wherein lies the cause of many autoimmune disorders and chronic conditions including eczema. These very specific and specialised tests which were done in London last year confirmed what I had been reading about and what I had suspected over the past year or so. Having a “leaky gut” meant that undigested food proteins and bacteria were passing on to the blood stream from inside the intestine and causing her immune system to overreact. This had caused systemic inflammation inside her body over a period of time and had led to her eczema eventually.

One of these tests assessed the gut barrier damage by measuring antibodies to barrier proteins called Occludin and Zonulin. The other factor was the presence of Lipopolysaccharides (LPS) which are toxins given off by some of the gut bacteria. If they are found in the blood, it usually means there is a breach in the protective gut lining. Both of these were present in her bloodstream in high amounts.  The other tests showed that her microbiome (the collection of symbiotic, commensal and pathogenic bacteria, fungi and viruses which reside in our gut) was also in poor shape and that her body was not able to digest and absorb the nutrients efficiently. All of these tests collectively reaffirmed the fact that she had a gut health issue leading to a “leaky gut” .

Ongoing Functional Medicine treatment

 

Gut Health Word Cloud On a White Background.

The primary objective was to start healing her gut using a combination of supplements and medical foods, lifestyle and dietary changes. Hopefully, over a period of time theese measures would reduce the chronic inflammation in her system and bring her eczema under control without the use of harsh medications. I had already made the necessary changes as far as her diet (https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/) and lifestyle (https://eczema-anindianperspective.com/2015/07/23/green-power-greener-alternatives-for-laundry-and-cleaning-products-especially-for-eczema-and-sensitive-skin-2/) were concerned.

She has been prescribed supplements to repair and reinoculate her gut and strengthen her immune system. These include supplements like L- Glutamine (to repair intestinal lining), probiotics (we use a brand called Culturelle as well as Bifido Complex by Metagenics), Omega 3 (Nordic Naturals), Metagenics GI Sustain (a medical food containing vitamins, prebiotics, minerals). It has been a bit more than 3 months since we started her on this treatment which continues along with her regular immunosuppressive medication (Methotrexate). Her test results will come in anytime now and will show if there is any improvement since we started her on these supplements in October. I will share the results with you as soon as I can.

The silver lining in all of this is the fact that for the first time since the doctors put her on harsh immunosuppressive medications since 2012 (Azathioprine, Cyclosporine, Methotrexate at various points in time), this is the first time that I have been able to reduce her dosage from the optimal level. She has been doing fine on this dosage for the past month or so. It is a small but important step in the right direction and it really counts.

(For further reading: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/

http://drhyman.com/blog/2014/10/10/tend-inner-garden-gut-flora-may-making-sick/

http://www.mindbodygreen.com/0-10754/the-6-best-ways-to-heal-your-gut-restore-your-health.html)

Difficult roads often lead to beautiful destinations

Famous Redwood Highway

It is so true! This is something I have come to know the hard way. Life changed for us completely about 4 years back when our daughter’s eczema turned into something so much more severe and complicated in the form of a chronic condition. I had to let go of my past way of living as a full time working mom and commit myself full time to taking care of the family and my daughter’s special needs. Of course, the whole family has had to make changes regarding our social commitments, travel, diet and other aspects of life. It has not been an easy road for any of us and indeed our daughter has faced the brunt of it. But even as I wish my daughter never had to deal with eczema at all, it has shaped us all in ways which have made us stronger, kinder and more resilient than ever before.

I have been sharing my research and knowledge about eczema and its related topics with you through my blog.  I also realised that in order to make all the changes necessary to manage my daughter’s eczema, I had to first make sure that she understood her condition in an age appropriate manner. I did this with the help of information and facts on eczema, countless discussion and counselling, story books and other means. This has helped her to not only accept the physical aspects of dealing with eczema (like moisturising and bathing routine, diet etc) but also deal with the far more difficult emotional aspects of living with this chronic condition.

My daughter’s dermatologist Dr Amrita Talwar has been instrumental in encouraging me to share our story and subsequently to write a book about eczema specifically for children. This has led me to write a book for children on this topic and is the first major development at my end. Both Dr Talwar and I realised that while there are many many resources for parents and adults who are looking for information on eczema and ways to deal with them, there is practically nothing for the children who are actually suffering from eczema. Hence the decision to write a book based on the experiences of a young girl dealing with her severe eczema. This book should help other children understand, accept and ultimately deal with their condition in a better manner. This book is scheduled to be published in the month of April and I will keep you posted on the same.

The other development at my end is that I will begin a new chapter in my life in the form of health counselling as a certified Health Coach. Over the past few years I have gathered a lot of knowledge about eczema and related topics pertaining to lifestyle ( clothing, detergents, moisturisers etc), foods  ( gluten free, nut free, dairy free) and their availability in India, essential oils, stress management through mindfulness meditation etc. I  would like to put all of these practical knowledge of dealing and living with a chronic condition as a caregiver to good use and share with others who are struggling with similar issues.  I decided to augment my experience and practical knowledge with a course from the esteemed Dr Sears Wellness Institute in the US to become a certified Health Coach. As many of you may know already, I had also started a Support Group for parents whose children suffer from eczema in Mumbai. I had taken a break due to my other commitments last year but I am planning to restart the Support Group meetings as well. My counselling work is also likely to begin in the next couple of months.

I can’t change the direction of the wind, but I can adjust the sails to always reach my destination

sailboat and sunset

This is exactly what I have had to do  in order to cope in the past few years as the primary caregiver for my daughter. This is what I teach her as well. While we cannot always change or control all the tough situations that life brings us, we can choose how we react to them.

In this post I have decided to focus only on the few baby steps that we have taken forward. We need to celebrate every little bit of achievement even if it may not look like much at all at that time. We have realised the hard way that dealing and living with a chronic condition is more like a marathon than a sprint and every step forward is a reason to rejoice. I hope we have more such reasons to celebrate in 2016!

 

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

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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.

Eczema Support Group meeting for parents

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Support Diverse Diversity Ethnic Ethnicity Variation Concept

 

 

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

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

Topics

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

Venue- Planet Godrej, Mahalaxmi, Mumbai

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

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

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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

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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.”