Monday, July 14, 2008

West Syndrome : An Appeal

It has been ages since I have blogged on the web. Well life has it's own ways of interrupting your plans. It all began in April this year when my daughter started having some kind of spasms 3-4 times a day. It was not until we took her to Calcutta were the spasm correctly diagnosed.

Anulika has been diagnosed with " West Syndrome" - which is a rare form of Infantile Epilepsy. In fact, since the day she has been diagnosed with west syndrome our life has turned topsy-tury. It is so rare that according to some sources that the prevalence is about 1:100000. Anyways now that the diagnosis has been done, she is under treatment.

Thanks to the grace of God she has not been having any spasm since 2nd of July. We hope and pray that she gets well soon.

Given the rareness of the disease, there is significant lack of information about the same in Indian households and doctors. I would like to appeal to all of you to send me information about the syndrome. Please don't send information from Wikepedia, Orkut, You-Tube as I have already searched the same.

Furthermore, God Forbid, if your child suffers from the syndrome or is diagnosed with it, please do get in touch with me so that at least we can form a support group and do something constructive about the same.

3 comments:

  1. Hi i m vicky from ranchi and i want to talk with u my cell no. Is 9905501010

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  2. Rohit, I am so sorry to know of this. I would have emailed you, but I don't have your current email ID. Here are two links, to the Epilepsy Foundation and the National Institute of Neurological Disorders and Stroke of the NIH, that contain highly valuable information. Because it is a rare disorder, even PubMed doesn't have too many case histories, but if you want, I can try to send you papers that you can use to consult with her treating physician. But there are isolated reports of other conditions, such as elevation of Plasma beta-alanine, leading to complete remission of West Syndrome! Corticosteroids are often administered, and they seem to help. Do let me know. You have my gmail ID.

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  3. Anonymous5:27 PM

    Hello I have some information for you.

    My son suffered from West Syndrome last year he was included in the International Collaborative Infantile Spasms Study (ICISS)if you search on this you should come up with some more info and links. he was put on two types of drugs as part of the sudy and his fits stopped in 14 days. The underlying cause of the fits was discovered when he had a brain scan, his brain is not fully developed at the front and sides. He has global developmental delay which he would have had even if he didn't have West Syndrome. The west Syndrome has just held him back that little bit further.

    We live in the UK and the study was organised by doctors based at the Royal United Hospital NHS Trust in Bath, England.

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