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2 year might be having seizures, don't know what to expect next? Getting MRI and EEG on Jan. 17th

Chandra - posted on 01/05/2012 ( 3 moms have responded )

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My son was born without his ring and pinky fingers on his right hand and his radius of that arm is dislocated. It is a birth defect and he will have to have surgeries this year. I am really concerned though because he seems to be having seizures. I thought they were tremors (nerve damage) when I first saw them in may. When I talked to the specialist he immediately said they were seizures and sent us to a neurologist.

Here's what happens. He will be playing or singing or laughing and all the sudden he stops and holds his right arm. Now I just thought it was hurting him because of his other problems but when I looked closer I could see his muscles were spasmodic.I realized then that all those times he has been upset and holding his arm and all the nights he'd wake up 5-6 times crying and then right back to sleep that it was his "seizures".

The neurologist says it could be seizures or it could be that he had a stroke in the womb and that's what's causing the seizures or it could be nerve/ brain damage.

I am so scared. I know we will know soon what it is that is causing him to be in a pain and that once we do we will be able to help him but the neurologist really didn't go over what would happen in those scenarios and I am so worried about what to expect!

If anyone has gone through anything like this please share your story even if you don't have any advice a kindred spirit is always welcome.

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Amanda - posted on 06/10/2012

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Chandra, my son will be two next week and we just completed the 48 hour EEG. Waiting for results. I am scared because it seems that he does his "staring spells" at night. I am looking for answers myself. How did your testing go with the EEG and MRI?? If you need to talk, im here.

amanda zag

User - posted on 01/15/2012

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Since it's the one arm, it may be nervous system related and not a seizure. Our daughter has what's called tonic seizures where both arms stick out and stiffen for about 8 seconds. So since his arm did stiffen, the EEG will show whether or not that stiffening is seizure related. I'm not sure if his neuro ordered a 24 hour EEG or more, but if so, you may want to bring your son's favorite toys and books because he most likely won't be able to leave the room. Since he will have leads on his head, you can prepare him a few days before his appointment by massaging his head so he can get used to it by the time he has the EEG. Ask questions about the different spike wave patterns.



If the EEG shows a seizure disorder, be prepared to be told about a few anti-epileptic medications. Always ask about long-term use and side effects and other treatment options. And no matter what his neuro recommends, get a second opinion. Your son may have other options that his first neuro didn't mention. So, hang in there, don't worry yourself too much. You need to be strong for him:-) Please keep up posted, take care *hugs*

Jamie - posted on 01/05/2012

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try getting the neurologist to get your child tested for white matter brain disease by getting an mri done. my daughter is 21 months old and is going through them seizure like episodes at night time but she don't hold her arm she will be sleeping and in her sleep sometimes she will start shaking and than all of a sudden start crying bloody murder than for a couple minutes she will act her self than back to crying bloody murder again on and off. but the 2 eeg's she had came up normal so soon she will be getting 2 more eegs she got an mri done and found out she has white matter brain disease but she is still going to be tested further to see what form of white matter brain disease she may have but her neurologist is guessing that sounds like salla disease. thats the best advice and story i can give you. but depending on where you live if you live near philadelphia ask your child's neurologist about getting your child in the childrens hospital of philadelphia to see dr tennekoon he is a specialist on things to do with the brain.

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