@youmaycallmegod...actually we had to wait until Monday to go to our Ped. They referred us to a pediatric neuroligist. The video we had helped them understand what we were saying about the spasms. The EEG was the determining factor. BTW...most pediatricians will not have specialty in neurology.
I think the fact that these started after her shots is only a coincidence. It is fairly common for IS to start around 6 months of age and I don't think they have anything to do with vaccinations. I hope she is doing well, poor thing.
Do not give up hope!! Just the fact that vigabatrin helped her is huge! We've been on that plus about 10 other meds and now the ketogenic diet. Nothing has ever made him seizure free for even a day. That's a big difference. All these kids are so very different in the way they develop and respond to meds. Progress can be very slow, but it sounds like your Ella is responding very well. Kids are usually kept on the meds at least a year after being seizure free.
I really don't want to discourage you (as all kids w/ this are different), but yes, he was the same way. Still is. Physically, he does very well developmentally. Cognitively, he is very behind. He is still non verbal at almost three. His social skills are improving. He was very distant, not wanting much interaction for a long time. Meds definitely contribute to this. Have you joined an online forum? I belong to the Yahoo Infantile Spasms group and it has done wonders for helping me cope
This is identical to how my son's infantile spasms began. After vaccs, development on track, and abnormal eeg but no hypps. I know how hard this must be for you as IS is devastating to everyone. Not trying to scare you, but it has been two years and we have still not gotten my son's seizures under control. However, he walks, laughs, and plays -even though he is severely developmentally delayed. We did not see the major improvement with vigabatrin like your Ella though. Best of luck...
thank you for writing. can i ask you. did your son make eye contact with you when he was a baby? How are you coping.....my daughter does not recognize me as a mom. any stranger can pick her up and take her home and she will be just as happy. its heart breaking. what do you mean developmentally delayed? what does he not do that "normal" developmenting babies do.
At 6 months old, 2 days after her vaccinations, our daughter started having these same movements. MRI, blood work, spinal tap were all normal. EEG showed IS. She was on ACTH for 6 weeks. On day 2 of the steriod injection, her spasms ceased. She was delayed from all the "chub" as her neurologist said, but with some therapy she caught up. She just turned 2 last week & is doing great! She is considered to be free of any IS/epilepsy & developmentally on track. I know how hard it is. God bless you!
Ella has been on vigabatrin for two months and she just turned 9 months. the first months she was spasm free but she started again. doc called it a "honeymoon" stage and increased her dosage. she gets regular eegs........she's developing fine all except she doesn't recognize me or look me in the eye. she's just happy by herself. it really breaks my heart. she's my first baby.
i wonder how long she will be on this med. 6 weeks sounds dreamy.
I will pray for your little Ella. I don't know how long they keep the little ones on vigabitrin. ACTH is a short term treatment...I think mainly due to the possible side effects (significant weight gain, high blood pressure, diabetes, irritability). Jayna was very distant on the steriod. She was "content" in her carseat facing away from everyone. She wanted nothing to do with us. You'd talk to her & she would get mad & cry. Running out of room -- one more post coming to you!
its horrible but i'm glad to hear that your daughter was distant as well, because we were questioning if on top of this IS if Ella was also autistic. I'm breast feeding her and she has no desire to treat me or give me any more attention than any stranger.
thank you for your prayers!!!! it does mean alot to us new parents that don't have a clue. we wanted another child eventually but now we are deathly afraid to just because we don't know what caused this.
since this whole thing started; its been chaotic. doc wasn't quite sure if it was IS because she lacked the IS characteristic pike in EEG and her development was on track. but in the end after some bad trials with topomax; she is on Vigabatrin.
she's been spasm free for one month now. we are still praying.
Has anyone thought of just going to their pediatrician ?
youmaycallmegod 1 year ago
@youmaycallmegod...actually we had to wait until Monday to go to our Ped. They referred us to a pediatric neuroligist. The video we had helped them understand what we were saying about the spasms. The EEG was the determining factor. BTW...most pediatricians will not have specialty in neurology.
mawomacks 8 months ago
I think the fact that these started after her shots is only a coincidence. It is fairly common for IS to start around 6 months of age and I don't think they have anything to do with vaccinations. I hope she is doing well, poor thing.
lawofjude 1 year ago
Do not give up hope!! Just the fact that vigabatrin helped her is huge! We've been on that plus about 10 other meds and now the ketogenic diet. Nothing has ever made him seizure free for even a day. That's a big difference. All these kids are so very different in the way they develop and respond to meds. Progress can be very slow, but it sounds like your Ella is responding very well. Kids are usually kept on the meds at least a year after being seizure free.
love4austin 1 year ago
I really don't want to discourage you (as all kids w/ this are different), but yes, he was the same way. Still is. Physically, he does very well developmentally. Cognitively, he is very behind. He is still non verbal at almost three. His social skills are improving. He was very distant, not wanting much interaction for a long time. Meds definitely contribute to this. Have you joined an online forum? I belong to the Yahoo Infantile Spasms group and it has done wonders for helping me cope
love4austin 1 year ago
@love4austin,
Thank you. i've been still kind of in denial...... it just puts things in perspective.
thanks
mawomacks 1 year ago
This is identical to how my son's infantile spasms began. After vaccs, development on track, and abnormal eeg but no hypps. I know how hard this must be for you as IS is devastating to everyone. Not trying to scare you, but it has been two years and we have still not gotten my son's seizures under control. However, he walks, laughs, and plays -even though he is severely developmentally delayed. We did not see the major improvement with vigabatrin like your Ella though. Best of luck...
love4austin 1 year ago
@love4austin,
thank you for writing. can i ask you. did your son make eye contact with you when he was a baby? How are you coping.....my daughter does not recognize me as a mom. any stranger can pick her up and take her home and she will be just as happy. its heart breaking. what do you mean developmentally delayed? what does he not do that "normal" developmenting babies do.
mawomacks 1 year ago
Im wondering the same with my daughter. Hope Ella is better
jayel71 1 year ago
At 6 months old, 2 days after her vaccinations, our daughter started having these same movements. MRI, blood work, spinal tap were all normal. EEG showed IS. She was on ACTH for 6 weeks. On day 2 of the steriod injection, her spasms ceased. She was delayed from all the "chub" as her neurologist said, but with some therapy she caught up. She just turned 2 last week & is doing great! She is considered to be free of any IS/epilepsy & developmentally on track. I know how hard it is. God bless you!
tkhert 1 year ago
@tkhert
Ella has been on vigabatrin for two months and she just turned 9 months. the first months she was spasm free but she started again. doc called it a "honeymoon" stage and increased her dosage. she gets regular eegs........she's developing fine all except she doesn't recognize me or look me in the eye. she's just happy by herself. it really breaks my heart. she's my first baby.
i wonder how long she will be on this med. 6 weeks sounds dreamy.
mawomacks 1 year ago
@mawomacks
I will pray for your little Ella. I don't know how long they keep the little ones on vigabitrin. ACTH is a short term treatment...I think mainly due to the possible side effects (significant weight gain, high blood pressure, diabetes, irritability). Jayna was very distant on the steriod. She was "content" in her carseat facing away from everyone. She wanted nothing to do with us. You'd talk to her & she would get mad & cry. Running out of room -- one more post coming to you!
tkhert 1 year ago
@tkhert
its horrible but i'm glad to hear that your daughter was distant as well, because we were questioning if on top of this IS if Ella was also autistic. I'm breast feeding her and she has no desire to treat me or give me any more attention than any stranger.
thank you for your prayers!!!! it does mean alot to us new parents that don't have a clue. we wanted another child eventually but now we are deathly afraid to just because we don't know what caused this.
mawomacks 1 year ago
since this whole thing started; its been chaotic. doc wasn't quite sure if it was IS because she lacked the IS characteristic pike in EEG and her development was on track. but in the end after some bad trials with topomax; she is on Vigabatrin.
she's been spasm free for one month now. we are still praying.
mawomacks 1 year ago
These appear to by infantile spasms or IS. If it is she needs to be seen by a doctor asap. Bless the baby and good luck.
pickytwo222 1 year ago