Journey of a parent and her child suffering from Eczema in India

While many of us may not know of this condition. It is now growing in India and we should educate ourselves about it.

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This is a journey of a family who goes through the condition called Eczema and how they fight it. The mom will be sharing the story in three parts.

Anandita Guha Maulik Rungta  holds support meetings for Eczema. For further details you can contact her on eczemaanindianperspective@gmail.com

Here is the first part to her story

This is our family’s story. A story filled with struggle, trauma, hope and strength. We led a pretty regular life till the time our daughter was born and then diagnosed with a chronic condition called Atopic Dermatitis (a type of eczema) and the definition of what a “normal lifeâ€_x009d_ is  changed for us forever. It is my hope and endeavour that in writing down about our experience  and our learning’s I will be able to share with you the knowledge that I have gathered along the  way which may help you in some way.

I know only too well the daily struggles of dealing with any kind of chronic medical condition and how hard it is to carry on especially when it is your child who is suffering. Our story might give  you some kind of hope, strength and determination to continue to do what is right for your child. Our own struggle is a work in progress but we have been lucky to have survived one of the worst nightmares that a parent can ever have of almost losing a child. Through our traumatic experience I have discovered the depths of my love for my children and also the strength that keeps me going. I believe all of us have this well of strength and love which remains hidden and surfaces when it is needed the most. But sometimes it might need a bit of a nudge and a bit of encouragement to overcome (or at least cope with) these kind of heartbreaking situations.

I have broken down our story in 3 parts (I, II and III) in chronological order as it has happened in our lives.

How it all began

Our journey with eczema started way back in 2007 when our daughter was just 1 year old. Aiyana was a chubby 1 year old with no health issues apart from the fact her skin condition was not baby soft and smooth like it should have been. Instead, we realised that her skin was always a bit rough and which never seemed to become smooth no matter how much we moisturised and took care of her. At that time my husband and I had not really heard of this skin condition before since it was pretty much uncommon in India. We later came to realise that eczema and related conditions run in my husband’s side of the family and that eczema is a genetic condition which can be inherited.

With Aiyana’s pediatrician’s help we came to know that we needed to keep her skin moisturised at all times and take special care of it. Through some trial and error we also realised that she was allergic to dairy, eggs and tree nuts like walnut and hazelnut. Once we stopped these foods she did fine and all was well again till October 2011.

In October 2011, we went on a religious trip to Rajasthan. The dry climate of Rajasthan did not suit her at all and during our 3 day trip her skin became very dry and started cracking. We came  back to Mumbai (where we reside) and started topical steroid treatments, “wet wrapping treatmentâ€_x009d_ apart from her daily moisturizing/bathing routine which continued. We also tried out  various creams and ointments but which did not halt the progress of her eczema.

Finally, in June 2012 her skin condition worsened. We did her allergy (Ige level) tests which came out positive for house dust, dust mites, wheat, nuts and a host of other allergens. I became desperate enough to put her on gluten free diet for the next 9-10 months. However, nothing really helped and towards the end of July her skin started scaling and she was scratching through the night without a break. But like most other parents we were truly scared to start giving her oral steroids though the doctors had advised it. It is the only treatment which has an immediate impact in such a situation.

When she finally stopped going to school (after not sleeping through the night for 10 consecutive extremely itchy nights) she developed a  condition called Erythroderma (widespread reddening of the skin due to inflammation of the skin and precedes or is associated with exfoliation i.e. skin peeling off in scales or layers).

Upon seeing her suffering for so long, we finally gave in and she was put on a high dose of oral  steroids (prednisolone). Her skin cleared up and become completely normal within 48 hours! This was the first of the few times that we have had to give her oral steroids to bring her severe eczema under control.

Doing what is right, not what is easy. I can only tell you from our experience that sometimes it is necessary to give oral steroids or some such powerful drug to your child. However, it has to be prescribed by the right doctor, at the right dosage and monitored correctly and regularly at all times. It is thus very important to see the right specialist from the beginning and to stick to one whom you can trust. It is very tempting to switch doctors and/or medication based on friend’s and family’s well-meaning recommendations but it may not be the best thing for your child. I have come to realise this over the years of dealing with doctors, family, well-wishers who have all tried to help my daughter.

I know that I have done the right thing for my daughter by sticking to her set of doctors who have been with us through all these difficult times and hence know Aiyana so well. They have also done much more for us than just handing us a prescription. Sudip and I have of course taken the opinion of other specialists as and when required. Ultimately though, only you as a parent are the best advocate for your child in this fight against eczema or any such chronic medical condition.

In my next post I will share our experience of giving phototherapy (Narrow band UVB) treatment and immunosuppressive medication to our daughter.

Note:All experiences are the authors own and Kidsstoppress does not recommend any medication or treatment to eczema. It is important to consult your doctor before considering any medicine for children.