MY SON IS NOW 1YRS,HAS ONH ALSO HAS INFANTILE MUSCLE SPASM .WANTED TO KNOW HOW SHE DOING AND IF HER SPASM EVERY WENT AWAY,WANT TO FIND OUT WHAT MEDICATION SHE TAKING,MY SON HAS BEEN TAKING TOPAMAX AND KEPRA DOESN'T SEEM LIKE IT'S WORKING
Alex had daily ACTH injections for over a month to stop the spasms back when he was 7 months old. He is now 3 and takes Trileptol daily just in case he were to have any seizure activity.
Thank you for sharing. I hope your son is doing well. I am giving a talk to a group of pediatric pharmacist and would like to share your video. Thanks
hope hes going to be okay. we had studied about types of seizures and this one is included. thank you for posting, its very useful video for like me who studies people with special needs. God bless
Alex is doing well. We hope to post a new video soon. Alex can now hold on to the wall, couches, or chairs and walk around the room. Hopefully he will be walking on his on soon.
Hi. I' m praying for a successful recovery and diminshed seizures for Alex. Can I just say,your ending message was a blast to our past.Our son, who is now 13 years old, had a stroke in utero and was diagnosed with seizure disorders at 6 1/2 months old.That is soo bizarre.The ongoing treatment was a night mare.Our son had functional hemispherectomy, 3 weeks ago tomorrow.The doctors disconnected the left hemisphere,removed 70% of brain damage and cortex.He is on Topomax,Trileptal and Felbatol.
how's your baby doing now? My baby boy has tsc and started having IS at 16 weeks old. He's now 14 months old we have not seen the hypsarrythmia that goes along with IS. We have seizure control with vigabatrin and keppra. has he had any other types of seizures? Take care!!
Alex is doing well. The spasms stopped after about a week on the ACTH. No hypsarrythmia on his last EEG. He has 1 more week of ACTH shots left. He has started Topamax and will be on that for a while.
MY SON IS NOW 1YRS,HAS ONH ALSO HAS INFANTILE MUSCLE SPASM .WANTED TO KNOW HOW SHE DOING AND IF HER SPASM EVERY WENT AWAY,WANT TO FIND OUT WHAT MEDICATION SHE TAKING,MY SON HAS BEEN TAKING TOPAMAX AND KEPRA DOESN'T SEEM LIKE IT'S WORKING
pascualria1 1 year ago
Alex had daily ACTH injections for over a month to stop the spasms back when he was 7 months old. He is now 3 and takes Trileptol daily just in case he were to have any seizure activity.
infantilespasm 1 year ago
Im glad to hear that he is good well ! Thats a cute kid
Supermanxtc 1 year ago
Thank you for sharing. I hope your son is doing well. I am giving a talk to a group of pediatric pharmacist and would like to share your video. Thanks
ktallian 2 years ago
Best wishes to little Alex!
HealthyLttleFish 2 years ago
Hope Alex is doing well.
thespottedape 2 years ago
thank you very much for sharing this with us... all the best to alex...he does look very adorable i must say :)
mugoikoroshiya 2 years ago
hope hes going to be okay. we had studied about types of seizures and this one is included. thank you for posting, its very useful video for like me who studies people with special needs. God bless
lilmisslone18 3 years ago
Alex is doing well. We hope to post a new video soon. Alex can now hold on to the wall, couches, or chairs and walk around the room. Hopefully he will be walking on his on soon.
infantilespasm 3 years ago
oh wonderful. Good to hear that your little boy is fine.
thatgirlkelly1 2 years ago
hi how is alex doing now,hope he is doing good
and is seizer free a big hug for that little boy
mishalucassen 3 years ago
He is doing really well. I will try to post a video soon of him crawling.
infantilespasm 3 years ago
wow that is really nice to hear i will be waiting to see him crawl,how old is he now
an other big hug for the little fellow
mishalucassen 3 years ago
Hi. I' m praying for a successful recovery and diminshed seizures for Alex. Can I just say,your ending message was a blast to our past.Our son, who is now 13 years old, had a stroke in utero and was diagnosed with seizure disorders at 6 1/2 months old.That is soo bizarre.The ongoing treatment was a night mare.Our son had functional hemispherectomy, 3 weeks ago tomorrow.The doctors disconnected the left hemisphere,removed 70% of brain damage and cortex.He is on Topomax,Trileptal and Felbatol.
4stemcellresearch 4 years ago
how's your baby doing now? My baby boy has tsc and started having IS at 16 weeks old. He's now 14 months old we have not seen the hypsarrythmia that goes along with IS. We have seizure control with vigabatrin and keppra. has he had any other types of seizures? Take care!!
mommasmith1977 4 years ago
Alex is doing well. The spasms stopped after about a week on the ACTH. No hypsarrythmia on his last EEG. He has 1 more week of ACTH shots left. He has started Topamax and will be on that for a while.
infantilespasm 4 years ago