Paige - Infantile Spasms also known as West Syndrome.

[Shaeree624]

Dear MrVickydoc. The trials and following of this medication is said to be after prolonged use. She was only on the vigabatrin for 30 days until it stopped working so there is no problem with her eyes at all. Her pediatrician said if it was a year or two yes there could be some issues with her vision but she was not on it long enough to cause any problems.

[MrVickydoc]

vigabatrin is said to have affecting eyes be careful ,god bless this child

[emilyexorcismzombie]

jackknife seizures :(

[dustincm891]

my son got diagnosed with Infantile Spasms at 7 1/2 months. we tried Vigabatrin and it worked for a good part of it. It wasnt the full body crunches his eyes would get that same look and eyes would roll up and to the right like they did during the crunches. so after after 3 months of him being on it we switched to the ACTH after 4 days they were gone and we didnt see them again for a couple months but he started having them again about 3 weeks ago :( 2 nd round of spasms 3rd try of a treatment

[kckhalid1]

hi, how is she now?? my baby 7mth old is also having infantile spasm. he is being given sodium valporate and emsolone. However he is not having any attack. but he doesn't raise his head and does't follow light and sound. Is these cases happen to your daughter also???

[cropdustz]

my dautghter is five months old and started having seizures at 15 days old she is in bristols childrens hospital in the uk and the treatments she is on at the moment do not seem to be working, is there any advise that people could give me please?

[dany78669]

@cropdustz

how she is doing now? How is her EEG? My daughter started having seizures at 45 days old. Now she is better, she has just 2-3 seizures every days...

[dany78669]

@cropdustz

How she is doing now? How is her EEG? My daughter started having seizures at 45 days old.

[dany78669]

@cropdustz

How she is doing now? How is her EEG?

[jegspillerpiano]

@cropdustz A lot depends on the underlaying reason for the west syndrome, and it's so rare that the body of 'expert' knowlege is pretty thin. Your daughter will have reasons specific to her and will be what she is and develop in her own way or not ultimately, and that's the only good news about this awful condition. I went through a similar thing with my son, and Sodium Valproate seemed to work in the end, unless he was growing out of it anyway, which i suspect may be the truth.

[Shaeree624]

she is doing better now. she had a treatment the ACTH treatment in November we were in the hospital for 2 weeks. They changed her medication because she outgrew the Vigabatrin. She is developing perfectly well right now. Meeting all her milestones. :D She will be 10 months the end of the month

[cuztomized]

@Shaeree624 Congratulations. That's great news :)

[1Nemobhai]

@Shaeree624 That's really great to know. Good for her - hopefully, she's continue to flourish and stay well.

[brainlesschap11]

my babe 3 1/2 year she is also suffer in salam spasms she is under treatment i m very worried abt her any buddy can tell me is'this cureable pls advice

[XDinexitaXD]

how is she doing?

we have a baby with the same disease, she's soon to be 3 years old.

god bless Paige

[alullyra]

poor paigey