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.