HELP my best friends son is undiagnosed so far

geyergurl

My best friend has a son who is 2 1/2 (3 in Dec) and just started (30 days ago) having random "seizures" (that's what they are calling them so far, the docs have not seen an episode so they arent sure they are seizures).  He has had 2 (28 days between them) the first one lasted about 5 minutes and the second one lasted about 10 minutes.  His episodes have both started totally out of the blue and he will start stumbling like he can't walk, basically asleep with his eyes open.  No eye contact acts as though he can't hear you etc followed by vomiting.  Then he "wakes up" as though nothing ever happened.  When my best friend was in labor with him her doc tried using a vacuum to get him out (later had to do a c-section) and created a very large abnormality on his head (was a hematoma) and when he was a baby he couldnt sleep on it due to pain so he developed shortened muscles in his neck and had to go to therapy to stretch those muscles.  His head is still misshapen but no apparent long term affects (unless the seizures have something to do with that) and other than that he appears to have some possible delayed speech, almost 3 and still no talking other than maybe 5 words at the most.  All tests have come back negative to date,  dr just scheduled an MRI and they are starting him on anti-seizure meds tomorrow am.  Does any of this sound like anything to any you? 

breezy0629

I don't have any advice for you..... however.... my son had the same experience with hematoma. They kept telling me, 2 weeks, 2 months, 4 months...etc.. until they finally said it may never go away. It is 'calcified' now, or at least that's what they tell me. It was HUGE & split to both sides at one point.... now it is all on one side.

We did find out that he had Plagiocephaly and torticollis; which was NEVER addressed by his pediatricianeven though I mentioned it at every visit we ever went to. The OT feels this plays into some of his low tone issues... but doesn't see enough still going on to recommend PT. 

He now has a permanent flat spot and permanent 'lump' on the other side. We are destined to never have a buzz cut. 

He also had Bi-lateral Ear Tags, which sent us to see a Craniofacial doctor who asked why he was never fitted for a helmet and I told him I asked multiples of times and he said that it would have had to been done when he was much younger.  

.....ANYWAY..... DS is having an EEG on Tuesday to 'rule out' absence seizures or abnormal activity. And they are calling me to schedule the MRI of his brain/head (which is long awaited from me, I have ALWAYS wanted to know if that darn vaccuum caused him damage) any day now.

I say all that to say --- lets keep in touch. I'd love to know the outcome on your end & maybe some info we get would be helpful.

If your friend wants to email me directly - or you -

scott and briana at hotmail dot com 

Paigeo

My DD started having seizures when she was 2 wks old.  She was officially diagnosed with epilepsy at 5 months and is on anti-seizure medication.  From what I have learned over the last 15 months, neurological problems are often hard to diagnose.  So far all of DD's tests (EEGs, MRI, CT Scans, etc) have come back as normal.  Even the diagnosis of eplilepsy often is just a catch-all diagnosis for when you have seizures with no obvious cause.  I hope the medication helpds your friends son and they get some clear answers soon.

OctBaltBride

My son has seizures/epilepsy due to a brain abnormality that happened while in utero.  My son had an EEG after his first seizure which showed seizure activity.  He is currently on seizure medication and is doing great.  Here is what I would tell her to do, have her go to the pedi or pedi neurologist and ask for a CT and an EEG.  If your friend has a video camera tell her to take a video the next time he has a seizure.  This video can help the Drs. see if indeed he is having a seizure.  Typically seizures are harmless to the brain unless they go for a long time.  If he is laying down while having a seizre tell her to put him on his side and clear things out of his way.  It is scary to watch someone have a seizure!  Good luck to her and I hope she gets some answers.