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what is infantile spasm
please, if someone knows anything about INFANTILE SPASM or have experienced this in your family.
since 2 months ago, my 1 yr old son has these symptoms:
his head drops down toward his neck or his sides especially after he wakes up for a few minutes & he is not responsive to people around him. his eyes roll up with no emotions. other than this his development and everything else is normal and ok. after MRI,CT SCAN,EEG a neurologist told us it might be infantile spasm but she still not sure. because my son does not have some of the infantile spasm symptom as she said. she put him on medication ZONEGRAN THEN TOPAMAX THEN DEPAKOTE none of them helped. PLEASE tell me whatever you know about this. what should i do? I'm going crazy.
THANK YOU!!
since 2 months ago, my 1 yr old son has these symptoms:
his head drops down toward his neck or his sides especially after he wakes up for a few minutes & he is not responsive to people around him. his eyes roll up with no emotions. other than this his development and everything else is normal and ok. after MRI,CT SCAN,EEG a neurologist told us it might be infantile spasm but she still not sure. because my son does not have some of the infantile spasm symptom as she said. she put him on medication ZONEGRAN THEN TOPAMAX THEN DEPAKOTE none of them helped. PLEASE tell me whatever you know about this. what should i do? I'm going crazy.
THANK YOU!!
My son started having seizues at four months of age, he is now 10. His started with infantile seizures, what you are describing doesn't sound like what his looked like. His were repetitive, coming like waves, it would hit and stop, hit and stop. His body would pull inward. did your neurologist say the EEG had abnormal patterns?
When my son was first diagnosed he sufferred with as many as 50 spasms a day lasting anywhere from 1-5 minutes, plus the unbelievable amount of meds they put him on to try and control them. He now has at least one seizure a day and sometimes up to four-five, but we are so better off than we were when they started. We have tried every med available in the U.S and even one from out of the state. The only med we got any relief from was felbatol.
The best advice I can give you is to be sure you're with a doctor you trust and be careful with the meds, the side effects can be devastating. Infantile spasms can cause severe developmental delays and doctors work hard at trying to stop them because of it. Seizures are very complex and what works for one may not for another. What I have found is that all of the cases are so different, each child may have the same "type" of seizure but won't respond to the same med. They have never found a cause for his seizures. We even took him to John Hopkins a couple of times in hope of them finding some reason.
I'm sorry for what you and your little one is going through...it can be unbelievably tough, if I can help ,
ethan's mom
When my son was first diagnosed he sufferred with as many as 50 spasms a day lasting anywhere from 1-5 minutes, plus the unbelievable amount of meds they put him on to try and control them. He now has at least one seizure a day and sometimes up to four-five, but we are so better off than we were when they started. We have tried every med available in the U.S and even one from out of the state. The only med we got any relief from was felbatol.
The best advice I can give you is to be sure you're with a doctor you trust and be careful with the meds, the side effects can be devastating. Infantile spasms can cause severe developmental delays and doctors work hard at trying to stop them because of it. Seizures are very complex and what works for one may not for another. What I have found is that all of the cases are so different, each child may have the same "type" of seizure but won't respond to the same med. They have never found a cause for his seizures. We even took him to John Hopkins a couple of times in hope of them finding some reason.
I'm sorry for what you and your little one is going through...it can be unbelievably tough, if I can help ,
ethan's mom
I have seen infantile spasms while working on a pediatric unit. It is a serious seizure disorder that often causes cognitive/developmental delays. Doctors often down-play the severity of this disease, but the majority of the children that I have seen with this end up needing some for of long-term care. I am really sorry that you are going through this. Here is a website with some more info for you: http://www.aboutkidshealth.ca/Epilepsy/Infantile-Spasms.aspx?articleID=6984&categoryID=EP-nh2-04a
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