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

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! 

 

 

 

 

 

 

 

 

Green power!! (greener alternatives for laundry and cleaning products especially for eczema and sensitive skin)

I am publishing an updated my article on ecofriendly and natural alternatives for laundry and cleaning needs at home. It is a primer for those of you who are looking for eco friendly and natural alternatives for a cleaner and greener home.

Cleaning word cloud concept

I find that it is important for me to highlight the fact that there are harmless, natural, environment friendly laundry, dish washing, and cleaning alternatives which are available to us. In this particular post I have focused on the laundry and household cleaning agents that we use (In subsequent articles I would be focusing on the impact of our food habits and diet). While most of us do all that we can as far as moisturizers and bathing products are concerned for children who have eczema, some of us are not aware that the regular dish washing, cleaning and laundry products used in a household can also have a large and harmful effect on sensitive skin and allergy/eczema prone children (and adults). In India especially, eczema and other allergies are a recent phenomenon as compared to the West.

While I was happy using regular detergents and cleaning products for my household cleaning and laundry needs, I was particularly happy using highly fragrances and foaming cleaning/laundry detergents and thought that all products which were labelled as “child/baby friendly” and “gentle on the skin/clothes” actually were child friendly and gentle on the skin. But after a bit of research I was quite surprised to find that quite a few of the products that I had been using all my adult life were cumulatively doing more harm than good to my entire family and this was especially true for my daughter who has severe eczema. That is when I started looking for alternatives and was pleasantly surprised to find out that there are much better, natural, harmless and environment friendly options which might also be much more economical for regular use. Now, over the past couple of years in my quest to manage my daughter’s severe eczema, I have made a lot of changes in our lifestyle which includes skincare products, laundry products, dish washing products as well as other household cleaning products.

Natural Non-Toxic Cleaning Products

Since I am sharing my own personal experience in using these products, I have restricted this post to products which are available to Indian consumers only. Also, please note that I am going by the information provided by the manufacturers as far as the ingredients are concerned, certifications as mentioned and in some cases I have taken into account the product reviews by other users. 

 All that foams is not soap!

 Soaps and detergents are two different things but are often mistaken to be the same. While soaps are traditionally made from fats and oils and have been around for centuries, detergents are usually of synthetic origin and is a much more recent phenomenon. Detergents react less to minerals (found in hard water) than soap and hence is now the preferred choice for most.

soap-bubble-kidsstoppress

  • Sulphates are surfactants which are used in a wide range of products especially laundry and dishwashing detergents in order to reduce the surface tension of water thereby improving its ability to wet things and remove the dirt.
  • Other products where Sulphates are found are bathing products like shampoos, shower gels etc, toothpastes and even baby care products and it provides the “foam” that we are so used to.
  • Nowadays most of the skincare and laundry detergents usually contain the gentler Sodium Laureth Sulphate (SLES) plus a host of other chemical fragrances and preservatives and not the much harsher surfactant Sodium Lauryl Sulphate (SLS).
  • But even SLES is a chemical which is harmful for sensitive skin and it is just one of the many chemicals which are present in any cleaning/skincare/laundry products.
  • The other common chemicals are preservatives like Parabens (Methyl, propyl, isbotyl to name a few) and Methylisothiazolinone fragrances which are mostly made of synthetic chemicals and synthetic colours,  found in many baby and child care products.
  • Many organic and natural products have preservatives like Parabens and foaming agents like SLES unless stated otherwise. Hence it is imperative while buying any such product to check the ingredients listed carefully no matter what the label says in the front. The good thing is that there are detergents (laundry and cleaning purposes) which are available to us today which use natural ingredients and are also fragrance free.

Soapnuts- the underrated cleaning agent

 Soapnuts (or reetha as it is known in India) is actually not a nut but a dried berry or fruit which is highly effective in powder and liquid form and can be used to clean clothes, jewellery, dishes, hair and other household items. It is found mostly in India and Nepal and was used extensively in India to wash clothes and hair long before liquid detergents and shampoos took over.

 

Nutshells of soapnuts in a cotton bagThe saponin which is found in the fleshy part of the soapnut is a 100 % natural hypoallergenic surfactant which is believed to have antibacterial and antifungal properties as well.

  • Soapnuts can be used for cleaning pretty much anything and is the only cleaning product which is completely natural. Any other product which is labelled ‘natural’ will contain at least some chemicals like preservatives, fragrances amongst others.
  • The other important aspect of using soapnut is that it extremely convenient to use in washing machines (front and top loading) and dishwashers (in liquid form).
  • We use soapnuts regularly as the main cleaning agent for all our clothes and white vinegar and essential oils (lemon is my favourite) as a fabric conditioner and to remove grease and add natural fragrance to the laundry.

Other laundry products

 Apart from soapnuts products which are natural, biodegradable and convenient to use either by hand or in washing machines are as given below.

Power Laundry, Liquid Laundry and Bio Laundry Bar from the Rustic Art brand: The main ingredients in these products are soda ash, natural neem soap powder, glycerine (for liquid laundry), non edible oils (for soap bar) and natural lemon extract. I use these products for my bed linen, towels, soft furnishings and other heavy materials, delicate clothes and woollens (Liquid laundry) and I use the Laundry bar for the tough stains.

rustic_art_power_laundry-kidsstoppress

Bio-D from Dailydump.org: Bio-D is a bio detergent by dailydump.org (a brand of Bangalore-based PBK Waste Solutions Pvt Ltd) which is a biodegradable product made from palm oil. I have been using it as an alternative to the Bio Laundry bar from Rustic Art for the past year or so for the clothes which are handwashed.

Another product which is relatively new and is available in India is Kyra Natural Detergent Powder which is made of organic soapnuts. I plan to use this in the near future.

Home clean home

 There are various household non toxic and environment friendly cleaning products which are available to us. One can use basic kitchen items like white vinegar, baking soda and lemon to make cleaning products. I have used a combination of these from time to time to clean my kitchen pretty effectively. ONe of my favourite recipe for a multipurpose cleaner is as given below-

All-Purpose Cleaner recipe from goodgirlgonegreen.com

3 parts filtered water

1 part vinegar

1-2 tsp lemon juice

5-7 drops of lemon essential oil

Source:http://www.goodgirlgonegreen.com/7-diy-cleaning-recipes-using-vinegar/#sthash.dwxieNSg.dpuf

(You can check out more useful articles on homemade and non toxic cleaners from the following websites-

http://www.goodhousekeeping.com/home/cleaning/tips/a24885/make-at-home-cleaners/

http://www.thenewhomemaker.com/cleanorg/vinegar.html)

Natural cleaner. Vinegar, baking soda, salt, lemon

But for those who want a more convenient off the shelf option there are other products available as well in India. These products are made using natural ingredients like essential oils, plant extracts which are thus biodegradable, non toxic and eco friendly as well. I regularly use the products listed below for my cleaning purposes:

  • Just Mop Spray- Multipurpose Household Cleaner and Just Mop- Herbal Surface Cleaner from the brand Herbal Strategi
  • Floor and bathroom cleaners from the brand SOIL
  • Floor cleaner from the brand Safe O Shine

Harmless dish washing alternatives

Dish washing detergents also use foaming agents, synthetic fragrances and other chemicals to make them extremely effective in cleaning grease and dirt. But if you are really interested in making a change for greener alternatives, there are other options available.

One option is to make a dishwashing liquid from basic items like washing soda, citric acid and vinegar like the recipe mentioned below from the blog myhealthygreenfamily.com (source: myhealthygreenfamily.com/blog/wordpress/homemade-borax-free-dishwasher-detergent-with-secret-ingredient/) which also can be used in the dishwasher

1 cup washing soda (old recipe used  baking soda)

1/4 c. citric acid

1/4 c. coarse salt

10-15 drops of citrus essential oil (Optional.  Orange, grapefruit, or lemon essential oils have great cleaning as well as antibacterial properties.)

Distilled white vinegar (in the rinse aid compartment)

Mix first 3 ingredients well in an air tight container. Add essential oil.  Mix again.  Fill your rinse aid compartment with undiluted white distilled vinegar.

Use 1 tsp. detergent for average loads.
Use 1 tbsp. detergent for extra greasy, dirty loads

White distilled vinegar can be thus be used along with lemon essential oil as a rinse aid thus eliminating the need for any artificial rinse aid products.

Another option is to buy a scrub made of the combination of soapnuts, shikaki (dried fruits of the Acacia tree native to Asia) and lemon peel which is a completely natural, non toxic and ecofriendly option for dish-washing by hand like the one by dailydump.org.

Availability and delivery in India

I have been able to find out about all the products mentioned earlier through a lot of research on this topic over the past few years. I have also managed to source these products in a few cases through the manufacturer’s own websites but more often than not through the various websites advocating a green, eco friendly and healthier way of life. These are websites which list organic foods, clothing, personal care, cleaning and other products.

Some of my favourite websites (with quick delivery and good service) are as listed below ( in no particular order):

  • DailyDump.org : A comprehensive website which promotes green, eco friendly and sustainable lifestyle through composting and non toxic products for home and garden. This website has the Vanastree soapnut and shikaki scrub (manufactured by Dailydump) that I use for my dishwashing needs and the Bio- D biodegradable detergent for laundry purposes. They also have their own brand of soap-nuts (108 Soapy Nuts).
  • NaturalmantraGreenngood and naturallyyours.in: These are comprehensive websites which list organic foods, supplements, natural home care, personal care products etc and is very convenient to buy laundry and household cleaning products from. I use all of these websites from time to time for my house cleaning, laundry and other household and organic grocery requirements.

I have compiled some of the easy and convenient ways in which you can use non toxic, natural alternatives for your household cleaning, laundry and dishwashing needs and their availability. I hope that this will encourage you to make your home a greener, eco friendly place for your family and friends.

Please feel free to get in touch with me for any queries or if you have any suggestions on this topic.

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

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)

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 MillGuar 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 …