When the going (eczema) gets tough…..(part 1)

IMG_0414

Aiyana and Shaunak in Goa

After Aiyana’s (and our) experience with Erythroderma in September 2012 we decided to take a much needed vacation. We ( Sudip and I, my mother and the kids) went for a one week holiday to Goa during the children’s Diwali break in November 2012. Goa is a small state in India on the Western coastline known as the Konkan region and is famed for its silvery beaches and is visited by tourists from all over the world. While we had a good time overall, her skin condition was just kept under control with oral steroids and immunosuppressants. Due to this reason, as a family we had decided to keep her away and stay away from the sea water and the swimming pool (the chlorine in the water tends to irritate sensitive skin).

Also, since Aiyana had been kept on a gluten free diet after her Ige ( blood allergy test) test had come positive to wheat allergen, it did pose some challenges as far as the food was concerned.  In order to manage her dietary restrictions, I had figured out the alternative food choices and some good gluten free products like Orgran and Bob’s Mill which are available in Mumbai (I wil be writing more on this in a separate post) . The hotel that we were staying in were also extremely helpful in catering to our special dietary needs and used to make us special gluten free parathas/rotis etc from the mix that I had taken with me. Overall I think we managed pretty well considering that in India dietary needs like gluten free/nut free/diabetic/allergy specific diets are not usually catered to in most places yet due to various reasons. As far as gluten allergy (foods containing gluten includes wheat or atta, maida, barley, malt, semolina or sooji) is concerned, it is quite uncommon in India and most people are not well versed with the specifics of this diet.

Under the influence of oral steroids (which we had started tapering) and after introducing an immunosuppressant (Cyclosporin)in September, her skin was much better overall. Itching however never completely went away.  The drug dosage was increased very slowly to the optimum level (depending on her weight) since the doctors did not want to take a chance with any adverse  reaction. With a powerful drug like Cyclosporin, it is imperative to monitor the effects ( increased blood pressure and reduced kidney function amongst others) of the drug on a regular basis. Hence, weekly blood tests were carried out initially after which it was carried out fortnightly and then monthly towards the end. I don’t know which was more traumatic for Aiyana, the skin condition or the blood tests.. This constant monitoring which is required made it difficult for Aiyana to go through with this treatment, but there was no option as such.

After consulting a Mumbai based senior pediatric dermatologist, we also started narrow band UV (ultra violet) treatment or phototherapy for her in November 2012. It is a type of treatment for adults and children with moderate to severe atopic dermatitis (also used for psoriasis) who have not responded well to other eczema treatments. Exposing the skin to UV light suppresses overactive skin immune system cells that cause inflammation and hence can control itching and rashes. The benefits of using phototherapy are that these therapies often work when other eczema treatments have not, and if done properly in a controlled environment and under supervision they can actually have fewer side effects than many of the prescription medicines used for eczema. In Aiyana’s case, her doctors wanted to eventually stop all oral medications and control her eczema with the help of narrow band UV therapy only.

Narrow band UV booth used for phototherapy

Narrow band UV booth used for phototherapy

So, while Phototherapy treatment continued, oral steroids was stopped completely in December 2012 and Cyclosporin (immunosuppressant) was stopped in February 2013. Her skin was overall in a good condition till the time that these medications were being given to her. Phototherapy treatment,  which had been started earlier was then continued as the solo treatment for her till April 2013. Phototherapy as a treatment did not prove to be very effective for Aiyana and her skin condition started relapsing  once again in April and within a few days became extremely dry, scaly and itchy. No amount of topical applications and moisturizers helped to control the same and Aiyana had to be once again put on oral steroids from mid April to stop it from deteriorating any further.

The good thing was that we had already planned for and arranged a trip end of April to meet a well known pediatric dermatologist in Great Ormond Street Hospital for Children and a pediatric allergy specialist in London. We came back to India and started her new medication at the end of May 2013 (I will write about our experience in Part 2 of  this post a lot happened after we came back and it might be an important lesson for parents using immunosuppressant for their child ) .While the results were not exactly what we had hoped for it did clear up some doubts as far as her allergies were concerned. The pediatric allergy specialist did a much more accurate (and painless) scratch test and patch test for her allergies and we were then able to include most of the foods back in her diet barring tree nuts (walnuts, hazelnut, peanut etc).

However, things were to become much worse for us before we got it back under control. There are so many things I wish I could have done differently for her if only I had known what was about to happen. But that is only wishful thinking on my part since it is only in hindsight that we have the perfect vision!

But what I do know is that we all do what we can for our children and that I will never give up finding the best possible treatments and course of action for my daughter. She is such a brave little girl who needs all my love, strength and support to see her through this difficult phase in life.

Our struggle with eczema intensifies

Aiyana with her brother Shaunak in 2011

Aiyana with her brother Shaunak in 2011

It was in October 2011 that we made a trip to Rajasthan for a religious function. For those who are unfamiliar with Indian geography, Rajasthan is a northern state in India with a very dry climate. Aiyana’s skin condition became extremely dry and started cracking even though we were there only for a few days. We came back to Mumbai and started topical medication in adition to moisturizers. We went through the whole gamut of moisturizers including creams and ointments apart from topical steroid creams of all strengths. We also tried out other treatments such as “wet wrapping” in the dry months of December 2011/January 2012 but nothing made her eczema go away completely. For some reason her eczema switch got triggered on and never switched off completely after October.

In June of 2012, Aiyana’s skin condition became very dry inspite of taking utmost care in moisturizing her thoroughly several times daily. We also did an allergy IgE test  (immunoglobulin E) where the blood sample is taken and then mixed with the allergen to see if there is a reaction. As we had expected, she tested positive to a whole host of  allergens like  dust mites, house dust, nuts and but also surprisingly to wheat as well. I did not want to take any chances in the light of the allergy test and with the doctor’s approval put her on a gluten free diet from June onwards. She did not show any immediate improvement with this diet but I still persisted for some more time hoping that her skin condition would improve eventually. It did not.

In the meantime, her itching and subsequently her skin condition became progressively worse. I tried various types of ointments, the highest strenght of topical cortisteroids and intensified her mositurizing routine as well but to no avail. Nothing worked and we reached a point where she was awake throughout the night and her skin started scaling and falling on the bed like black dust due to her constant itching. I can not tell you how painful it was for us to see her go through this agony of non stop itching and hence no sleep for about 10 consecutive nights. Still my husband (Sudip) and I were hoping against hope to see if we could somehow avoid giving her oral steroids and manage with topical applications only. In August 2012, she stopped going to school and we started sitting up with her all night trying to distract her with various activities like drawing, watching movies; anything really to make her stop itching. Her dermatologist and another pediatric dermatologist whom we had consulted, both informed us that if we did not start her on oral steroids soon, she would have to be hospitalized. She had now developed a skin condition called Erythroderma. Ertythroderma is the widespread reddening of the skin due to inflammation of the skin and precedes or is associated with exfoliation (skin peeling off in scales or layers). She was started on oral steroids (Prednisolone) in August 2012 at a high dose (according to her weight) and her skin cleared up within 48 hours! All I could think of was if only we had given her the oral steroids earlier on and spared her all this agony. Aiyana’s skin condition remained in good condition while she was on oral steroids and she was subsequently prescribed immunosuppressants (Cyclosporin) in September 2012 as oral steroids was just a short term medication to control her Erythroderma.

I can only tell you from our experience is 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 you can trust. It is very tempting to switch doctors and/or medication based on friend’s and family’s 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 to stick 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, only you as a parent are the best advocate for your child in this fight against eczema.