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Infantile Spasms
Wed, 01/25/2006 - 10:14Topic: Parents & Caregivers
My son Tommy was diagnosed with Infantile spasms at 5 months old. We noticed "twitches" that our pediatrician told us may be primal reflexes. After a few more days of seeing my son having "jack knife" seizures where his head would drop and his arms would fly up and his knees being pulled to his chest - I knew something was definitely wrong. My husband video taped the seizures and we brought the tape to our peditrician to view. He immediately suggested we go to see a neurologist and have a EEG done. We did. That same day our son was admitted to the hospital for one week for many tests. He had a spinal tap to rule out any type of in fection. Then he had a CAT Scan, an MRI, many blood tests as well as X-rays done. Everything came back normal. My son shows no sign of mental retardation and seems to be on track developmentally. He was put on ACTH for one month with no change to his spasms. He is also taking Kolonopin. He also has acid reflux and is taking Zantac for that. We are now on Topamax. It has been about 2 weeks and we see little improvement. Tommy has head bobs throughout the day, he has clusters of spasms when he wakes from naps and in the morning, he also jerks when he is drifting off to sleep. He is now being waken at night from the seizures. We feel helpless. We heard that the longer we take to stop the spasms the greater the chance that Tommy could stop developing or take steps backwards in his development. Our neurologist suggested tryung a drug from Canada called Vigabatrin or Sabril. We are from the US and it is not approved here yet. I have done some research on this drug and it seems dangerous for long term use. We just don't know what to do. Any advice anyone has will greatly be appreciated. Thank You!
Comments
Re: Infantile Spasms
Submitted by DREAM MOM on Fri, 2006-05-05 - 16:29
Hi,
My son had very similar seizures as to what you described. My son is 14 years old now but the seizures and spasms as you described are nearly identical. Click on the second link below-about Dear Son. My son has Partington's Syndrome which was caused by a mutation in the ARX gene. The ARX gene is very new, only a few years old, and causes a variety of diagnosis, one of which is Partington's Syndrome. The ARX mutation is x-linked and occurs almost exclusively with boys. I have links to the geneticist and where you should get tested in that link; it also describes the types of children that should be tested, boys with infantile spasms of unknown etilogy are one type that should be tested. I would strongly recommend that your son be tested. If he tests positive, then you need to be tested as well because if you have the mutation then 50% of your son's could have this gene as well which means you could have another child just like Tommy.
You didn't mention it, but make certain that your son is being treated by a pediatric neurologist that is affiliated with an academic medical center. An adult neurologist might prescribe something very different although the medications you described seem o.k. There is a GI component to the ARX gene, although not much is known. My son is on Prevacid for the acid rflux.
Good luck. My e-mail is on my blog if you have any questions or if I could be of some assistance.
http://dreammom.blogspot.com
http://dreammom.blogspot.com/2006/04/about-dear-son.html
Re: Infantile Spasms
Submitted by klaudiav on Tue, 2006-10-17 - 13:19
Hello Tommys mom! i JUST became a member of this site when i saw you asking about Vigabatrin and Sabril....i live in St. Martin and my daughter is on both meds. She started having spasms the week she was turning 6 months. first the doc thought it was stomach cramps (from the explanation i gave him) that didnt work so i took her to the emergency room, she was admited and we were flown out to Guadeloupe (french island) there we had a EEG done...it was abnormal. they started her on sabril and vigabatrin and she has not had any seizers since....her motorskills was improving but lately i feel like she is going backwards instead of foward!! dont know if its because she is now taking vitamins with her meds. so i have stopped with the vitamins as of yesterday. she is going to have another EEG done
soon. The pediatrician told me that the vigabatrin and sabril are not approved in the U.S. i really hope it becomes available soon.
Lets keep praying for our kids!
Re: Re: If a child has IS the EEG
Submitted by jolieweng on Mon, 2006-04-03 - 20:11
Hi, While I can't answer your question about Keppra, I can tell you that it is hard to watch your baby go through seizures. I just wanted to extend my well wishes your way and let you know that there is hope ahead of you, your son and his future! Good Luck!