Infant Seizures

This is a really difficult time for you I am sure! Tomorrow we are headed back to the neurologist for the ...Oh, i've lost track of the number of times. We have been in and out of the hospital, to several doctors, through tons and tons of tests, and everything so far has come back fine, except the condition of my precious son. We are confused, and we want answers. I have looked over every detail of his medical records, and have found a few interesting things in the blood work. I feel like I am the one supplying the doctor with many ideas of treatment roads(and I am doing this by only my research) they say they don't know what he has, they haven't seen it before. I will not take this as an answer, I know there has to be a diagnosis, or a treatment, or something! He jerks, he has motor delay, developemental delay, and therapists have said he is uncomfortable in his own body(i can see that too). He is aggravated that the things he wants to do are interupted by that seizure activity happening in his sweet brain, so he gives up. So much of the time I can't even tell he is in seizure, I just know carter is somewhere in there, and every once in a while we get a chance to see the true him, when he can break through the electrical malfunction that is going on upstairs. I am desperate for someone to talk to. Someone to share this load with, and someone maybe we can help.

Hello,
since I last posted we have confirmation that my son has epilepsy (infantile spasms.) they have started him on acth twice a day and this was a week ago. Not sure if it's working yet. I think it has let up some, but he is sleeping more so it's hard to say. He has smiled more now, but he still doesn't focus on us, does alot of head bobbing, and isn't doing the normal 6 month old things. My husband and I are terrified of finding out the worst. From what we've been told though we won't really know anything until he's about a year, then they can tell if he will be delayed. But even if these seizures stop, from what I understand he has a high chance of developing other kinds, for instance west syndrome (which terrifies me) and also developmental delays. My son also has a small head, he measure in at 5% on the scale and his soft spot is closing. They won't really say what this means, so instead of feeling reassured about getting the right information, I just seem to have more questions. I hope your getting what you need. Have they actually diagnosed him yet? They did an mri and video eeg and the mri was normal, but the eeg was very abnormal. They were able to catch some of the seizures on the eeg. All I can say right now is it's very scary and quite expensive. Take care.

My sisters baby girl who is 20 months old has started to have
seizures. She seems to go blank and drools and all her twitching
is to her right side or in her right arm. She can have a seizure
while standing but goes all funny on her right side and is completely
blank to anything around her. They are trying to get an appt
for her at sick kids in toronto, but in the meantime, has anyone
out there experienced the same thing with their child and if yes
what's wrong.
We are soo worried.
Thank q
lal

Hi,
as you can see from my messages my son has epilepsy. His started quite early and luckily we caught it soon after they started. We took him to our doctor who refered him to a neurologist. They started treatment right after the mri and eeg were done. After 2 months he is now seizure free, at least for the near future. I would suggest you do whatever it takes to get him into a neurologist and quickly. The sooner they start medication the better. My son has developmental problems that we are working on due to his seizures. We are hoping things keep improving. Like I said the best advice is to get help right away and don't take no for an answer. I wish you the best of luck.