Creating health and not just treating a chronic condition (like eczema)

adult and child hands holiding red heart, health care love and family concept

My last post on our own journey was quite a while back. A LOT has happened since then.

This has been a really eventful year but in a much better sense than it has been over the past few years. This is the year when we saw a glimpse of how eczema can simply fade away when the root cause is treated and the body heals. This is the year when I completed my nutrition and dietetics course but more importantly I also completed my Functional Medicine Health Coach certification from the Functional Medicine Coaching Academy.

All those who have been following my blog know that it has not been an easy road that has led me here. It has been a struggle to say the least not knowing for sure that the treatment and the offbeat path I was following for my  daughter’s eczema would even work or not. This was a treatment which would work from inside out by strengthening her immune and digestive systems by providing the right conditions for her body to heal. That our body has an innate power to heal itself given the right conditions is something that we probably have witnessed to some extent or other but rarely give much importance to.

The path that I chose takes a much longer time, effort and involvement. Because of this reason and also due to a lack of awareness is why we usually seek out conventional medicine as a “quick fix”. I had the same approach to our health till our daughter’s health got affected really badly. 

Don’t get me wrong, antibiotics and steroids and other drugs have saved millions of lives and they will continue to do so. But this same approach does not work well for chronic health conditions. The other problem is that we take our bodies and our health for granted at times due to our busy schedules. And then when things go wrong we usually end up looking for a quick and painless solution.

But I am digressing here.

Eczema and our lives now

First I would like to give an update about the treatment and our daughter’s eczema today. The Functional Medicine treatment that I had started exactly 2 years ago has now started showing some results. It has been a slow and gradual healing journey (which is not yet over) but then I guess it works only when it actually becomes a way of life. I have written various posts on what this treatment is all about earlier and you can check them out.

5 R framework

Functional Medicine treatment in our daughter’s case focussed on healing her gut and the issue of intestinal permeability primarily through dietary changes but also with the help of various supplements. We followed a 5 R framework- remove, replace, reinoculate, repair and rebalance. Over time this has helped her digestive and immune system to recover and become more strong and also balanced. Her skin has showed the results on the outside by becoming smooth and soft. For the first time in many years, we have been sleeping well as a family and through the night. As any parent with a child suffering from eczema will tell you, that is a luxury!

Of course, this does not mean that we can stop doing our work and that her skin condition can never become worse again. Her skin is her weak point in the immune system and may flare up when there is a trigger (in terms of food, toxins, stress etc) and she will always have to be careful. She is still on her immunosuppressive medication, Methotrexate but it is at half the dosage as earlier at 5 mg. Also I need to tell you that we have had a minor setback since coming back from our US trip this month. We spent about 2 months there during the kids’ summer break and even with lapses in her dietary restrictions (excluding gluten which does not suit her at all), her skin condition was at its best in a long time inspite of the sun exposure and other uncontrollable factors during traveling. But ever since after we came back her skin condition became a bit rough and itchy overall. What had changed for her was the environment and everyday stress and her body is taking some time to acclimatise and settle down.

This was a real eye opener for me. This incident showed that even when her diet had improved since being at home, changes in the external environment (read water and air pollution) had a big impact on her skin condition. I immediately ramped up her antioxidant levels to combat the external stressors through a combination of diet (cruciferous vegetables like broccoli, cabbage, cauliflower and other leafy greens like spinach) as well as supplements like vitamin C and cucurmin and Hist D Jr. The last one has ingredients like quercetin ( a natural antioxidant), NAC (an amino acid which is a precursor to one of the most important antioxidant in our body called glutathione) and vitamin C ( a natural immune booster, anti oxidant and histamine lowering vitamin). Her skin has subsequently improved quite a bit and is settling down. I am keeping a close watch on how she is over the next few weeks or so.

On a more personal note 

Over the past few years of dealing with my daughter’s health related problems I realised a couple of things. One, initially I learned all about eczema so that I could help my daughter but after a while I realised that I had a genuine interest in knowing how to create health and apply it to our lives. The other realisation was that I wanted to bring this information to help and guide others in moving towards their own health and life goals. One thing led to another and my quest for knowledge led me to the Functional Medicine Health Coaching course which has turned out to be the perfect fit for me.

I enrolled with Functional Medicine Coaching Academy (FMCA) which is a US based organisation. FMCA is offering this course in collaboration with the main body for Functional Medicine, Institute of Functional Medicine (IFM)I  completed the course last month and I am proud to say that I am India’s first certified FM Health Coach!

Health-Coach-Certificate-Badge_web

“A Health Coach is someone who really listens to you, focusses on what is right with you, supports and guides you”.

As a Health Coach I will thus be providing customised guidance and support for various chronic health conditions on

nutrition and hydration

-exercise and movement

-sleep and relaxation

-social relationships and connections

-mindfulness and stress management

Functional Medicine Health coaching – a new beginning

I am in the process of setting up a clinic with Dr Amrita Talwar (my daughter’s dermatologist) in Mumbai. I will also be having my own practice at the address mentioned below-

Nourish. Heal. Connect

Lodha Supremus

Unit 804, 8th floor,

2 Senapati Bapat Marg, Opp Kamala Mills

Mumbai 400013

The setup for dealing with chronic conditions is quite different from that of dealing with conventional medicine due to the time and commitment required both from me and the person involved. I am in the process of setting up my practice with the help of latest technological platforms relevant to coaching which are suited to dealing with chronic conditions. I am also in the process of customising relevant dietary guidelines for Indian conditions and sensitivities. In case you are interested in reaching out to me for health coaching for any chronic health conditions, please feel free to write to me at

anindita@aninditarungta.com 

You can also reach out to me at

Twitter: @aninditarungta

Fb: @healthcoachinindia

As someone wise had said, “You have got a new story to write. And it looks nothing like your past”. 

This is definitely true for me and it is equally true for you! 

 

 

 

 

 

 

 

 

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

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!

 

The only journey …is the journey within

I have been juggling a lot of balls in the air lately and in the midst of doing that I have fallen behind in my blogging lately. But I am happy to say that there have been some developments at my end with regards to my daughter. Her schooling is one of the things we have been dealing with and thinking about for the past six months or so. As I have mentioned earlier, Aiyana is currently on a low dose of immunosuppressive medication to control her eczema. I am sharing our experiences in the hope that it might help other children who are in a similar situation in some way.

Education and eczema

Inspite of the immunosuppressive medication, her eczema becomes worse when she sweats since her itching increases considerably. Aiyana’s school, Bombay Scottish in Mumbai, has been very supportive. She is excused from any outdoor activities including the school assembly, helped with her moisturisation and medications as and when required and generally taken care of as a whole. We make sure that she is picked up from school in the afternoon by car and does not have to travel in the hot sun while coming back home. But even that is not enough to help with her to cope with the sweating and itching and scratching at school.

As you would be aware, Mumbai has a tropical climate and is humid almost the throughout the year being close to the sea. She started missing school on a regular basis due to heat rashes and eczema flare up ( in India, only schools following an international curriculum are air conditioned). She would itch all over and therefore scratch in the class with a constant fear of being seen by her classmates. After consulting her doctors we finally decided to move her to a school with an air conditioned environment which we hope which would be more comfortable for her. To this end we did a 2 week trial in a school (based on international curriculum) with an air conditioned environment. This was possible entirely due to her dermatologist who helped to arrange this for her. At the end of 2 weeks it looked like it did seem to make a difference and she was quite comfortable in this environment. However, it still took us a while to decide on and finalise a school for her and our son (who starts school this summer).  This process is finally over and just last week we secured admission in an international school closer to home. Both my children start school in July and I am hoping that my daughter will be able to attend school regularly without the discomfort of constant itching due to sweat and subsequent scratching and pain.

A medical condition like this does not end with medications and visits to the doctor. Life is a constant struggle to carry on with routine activities on a daily basis under the onslaught of an unbearable itch (especially when there is a flare up). My 7 year old daughter used to be in constant fear of being seen by classmates while feeling the unbearable urge to scratch in odd places.  As I read somewhere recently, “eczema can be compared to a bully who sometimes keeps going for days on end, then leaves, only to reappear“.

Sleep deprivation is an added burden to bear for such small shoulders due to the itching and scratching at night at times. Even though Aiyana’s medications keeps  her eczema under control most of the times, there are frequent phases when it becomes worse due to stress, illness or other triggers. Antihistamines do not seem to help much in her case at night time and it is a difficult time for us as a family. It in fact happened very recently due to her illness and seems to get aggravated during times of ill health due to any reason whatsoever. While those nights (and days) seem to be a never ending cycle of itching and scratching, it is very important to provide constant support and keep your child’ spirits high. I try to make sure that I do not portray a defeatist or negative attitude and distract her as much as possible and find ways to make her itching more bearable (like rubbing instead of scratching).

Ayurveda- an ancient Indian way of life and healing

I am taking Aiyana for 2 weeks to I-AIM Health Care Centre near Bangalore (in the southern state of Karnataka) for an Ayurvedic check up and treatment. It is founded and run by Padmasrhi Darshan Shankar, known for his outstanding contributions in the field of revitalization of traditional systems of health-care in India. Ayurveda is not simply a healthcare system, but a form of lifestyle adopted to maintain perfect balance and harmony with nature thus making it a wholistic system of medicine. I am hoping that our traditional and alternative form of healthcare is able to complement and control my daughter’s eczema and help her in the long run. I will write more about it later once we are back from our trip. 

 

 

 

 

 

 

Nutritional supplements- worth a try

Through interaction with other parents whose children have eczema, I have come to know that in some cases  nutritional supplements like Omega 3 oils, probiotic ( probiotics are organisms such as bacteria or yeast that are believed to improve health and are available in supplements and foods) and multi vitamin supplements have helped to lower the incidence of flare ups in childhood eczema and bring some under control. There is no concrete scientific evidence as of now to prove this conclusively and studies are going in some of these areas. Due to this, doctors rarely prescribe these as part of the normal course of medications for Atopic Dermatitis. But after reading up on these and consulting Aiyana’s doctors about the same I decided to try the Omega 3 and the probiotic supplements for some time for my daughter.

Probiotic

Omega 3 oilI did a lot of research on a suitable and safe product (and brand) for Aiyana ( there are many brands and types of Omega 3 oils and probiotic supplements worldwide) and based on the reviews, some literature etc I shortlisted the 2 products as given below-

 Nordic Naturals Omega 3-6-9 Junior and Rainbow Light Probilicious  Gummies  for children.

Aiyana has been taking these supplements for a few months now. I will be able to share our experience only after a reasonable period of time as these kind of steps usually work in the long run and the impact might not be immediately visible.

 

Its time to turn life’s stumbling blocks into stepping stones

A cnikihronic medical condition like eczema is rarely only a physical struggle, a lot has to do with an immense amount of inner strength that is required to cope with this on a daily basis. My daughter has to deal with the obvious consequences like physical discomfort, sleeplessness, fatigue as well as the social, emotional consequences of dealing with this condition everyday. It is as much my responsibility to make sure she is as comfortable as possible at a physical level as it is to ensure that she is equipped to deal with this condition at an emotional level keeping her self-confidence intact. She has grown stronger emotionally as a person since her traumatic month long ordeal in the hospital last summer due to an unforseen reaction to a medication given to control her eczema. (I have written about our experience in the post- “…the tough get going- part 2”)

I know that I have succeeded to a large extent in my endeavour when friends, families and even complete strangers praise my 7 year old’s cheerful smiles, her sweet and caring manners and her emotional strength.