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Infantile Spasms

Wed, 01/25/2006 - 10:14
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!

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Re: Infantile Spasms

Submitted by arieshyper on Sun, 2009-03-08 - 00:23
My son romulo was also diagnosed with infintile spasms at 5 months old. this is one of the scariest thing's a parent and child can go through together.  They put my son on Vigabatrin and i am so  grateful for that. my son stopped soon after. Milo is now having his fourth birthday in april but unfortunately I am seeing the signs coming back all over again like a bad dream replaying itself and i am only an onlooker with nothing but a stare. His father has blamed me since day one and insists i had to have done something terrible during pregnancy. I don't know if they dis-appear and re- appear at certian ages i certianly hope not I am not wanting to relive this again. But I for you completely suggest Vigabatrin and I hope god blesses you with more years of your children's lives  that I have shared with mine.

Re: Infantile Spasms

Submitted by robin89 on Wed, 2010-12-08 - 01:45
hi tommys mom, my son had just turned 6 months when they diagnosed him with infantile spasms he is about to turn 7 months on the 19 of dec. about 2 weeks ago he was also having these "jack knife" seizures i took him to the hospital and they ran all kinds of test CT scan,MRI,normal and a EEG which came back abnormal.when we left the hospital he was just on topamax and saw little improvement also and was still having these spasms for about three days after we left the hospital, when we went back the neurologist decided to put him on gabitril and the next day after he took his first dose,i noticed they had subsided. right now hes on topamax and gabitril and he hasnt had one of these episodes for more than one week. we just went to the neurologist yesterday and he told us he is doing very good.he is developing mentally and phisically well he is active like if nothing had ever happened. on monday we have another EEG i pray to God that he will get better.May God bless you, your son and family.

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