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ds had his first (and second) seizures saturday night... update post 11

post #1 of 11
Thread Starter 
I posted the story in TAO... and I was referred here... I honestly wouldnt have thought of this board... but I'm glad they told me

I guess I'm seeking some advice and support... it was honestly the most terrifying moment since I became a mom...

we're making a follow up with his ped tomorrow... and I really hope I get some kind of answers soon.

from what I've read around the net, his ped will probably schedule an EEG... but if she doesnt should I request one anyway? I dont want to be overzealous but I dont want to not do enough.

and if you didnt read the story, he did have a CT scan.. and it came back negative for any obvious cause.

thanks
post #2 of 11
Praying and thinking happy thoughts! Now where is that g roup hug smilie?
Michele
post #3 of 11
I'm sure she'll order an EEG. A 30 minute EEG is sometimes not very helpful as it's such a short recording it can be falsely negative. It was in our case. A 24 VEEG is much more helpful but most neurologists won't order that first so it's likely to be the short EEG.

Given your dh's history of Epilepsy and his age(over 2) it's more likely that it's not a structural abnormality or underlying metabolic condition but a hereditary epilepsy. I obviously can't say that with complete certainty but we've been told by quite a few neurologists that hereditary epilepsy's start around 3-4 years old. I'm not saying he has Epilepsy either, I hope he doesn't, I'm just throwing out some information.

Maybe I should just stop talking and offer a hug!



Seizures are scary. I'm sorry you had to witness them.
post #4 of 11
Hugs to you mama. So scary. This is a great group of people for comfort and ideas.
post #5 of 11
The moms and dads here are a great source of support and comfort and help for me when we're having an issue (autism and sensory processing disorder in our family) or just need someone to say, "I get it!"

post #6 of 11
Thread Starter 
thanks

an EEG has been ordered... but not scheduled.. his appt with his ped went well...

ds seems to be at 100% but as a precaution we've restricted the more physical activities, mostly so he doesnt bump his head... but somehow i feel like I'm being mean... ya know... any ideas?

It'll take as long as wednesday to get an appt scheduled for the EEG and to see the ped neurologist... so I wont get any real answers for quite awhile

thanks again!
post #7 of 11


We just went through a similar situation, and I reacted the same way with my DD. I hope you get some answers with the EEG and/or Dr. appointments.
post #8 of 11
Thread Starter 
ds will be getting an EEG... we dont know when yet... but hopefully the appt with the ped neurologist with coincide with the EEG...

and the cultures taken in the ER were great... nothing was off (thank you)

more updates as I get them... thanks for the support!!!
post #9 of 11
I am thinking of you guys. Let us know what happens.
post #10 of 11
Thread Starter 
EEG and pediatric neurologist consult are on the 27th... it is a sleep deprived test.. so I'm sure that's gonna be a real fun night

I'll be grateful to get his all over
post #11 of 11
Thread Starter 
ds had his EEG today... preliminary diagnosis says hes fine and may have benign rolandic epilepsy... nothing too big.. and the seizures dont cause damage... but still kinda scary... Monday we'll hear the full diagnosis after the EEG results come back to the Pediatric Neurologist...

thanks for the support!!!

I'm so tired... ugh... sleeeeeep
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