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.
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.