Seizures - please help!

[Guest guest]

Hi everyone,

My son, 21 months, was hospitalized Th – Sat last week

in our hometown, Rome, GA, when he suddenly began having

seizures. I’m sure some of you have experienced seizures, and we

are all still reeling over how horrible it can be. So far, he is not on

the ASD spectrum, but our daughter, 5, is HF autistic. We’ve been

keeping a close eye on him because he does have some behaviors such as

toe-walking, arm-flapping, and other stimming. He’s developmentally

on target, and has good social, interactive skills (aside from some aggressive

behaviors – hitting, kicking). Anyway, ish Rite wouldn’t

accept him as a transfer patient (which blew our minds) even though our MDs

were trying to get him transferred. Additionally, we’ve been told

that his EEG won’t be read for up to 2 weeks because we don’t have

a ped neuro in Rome.

All ped neuro offices in Atlanta/Chattanooga have told us it will be weeks

before we can get an appt! The docs here were able to rule out heart

problems, and an MRI was normal. Aidan continues to have seizures, some

mild, some pretty big (in our opinion anyway), and he’s been on Ativan

for a few days, but we can’t keep him on it more than another day because

it’s habit forming. We’re not really sure if it is helping

with the seizures, but when he missed a dose yesterday (because of his MRI

yesterday morning – he was NPO), he had a bigger seizure. He’s

had 5 notable seizures since Wed., and we don’t know how many small

(absence-type) seizures. We hate to start an anti-convulsant until he

gets a neuro work-up, but obviously will start one if he keeps seizing.

Our doc has said if he has one more that we should go to the ER at ish

Rite – she’s been great, but recognizes her own limitations.

She said we wouldn’t be over-reacting if we went on to the ER last night,

but we had just gotten home from the hospital, and were all absolutely

exhausted – Aidan is traumatized, I think, from all the poking and

prodding. He didn’t have a seizure overnight (that we could detect),

but he was agitated, irritable, and restless – it’s like his little

body was struggling so much. So much for rest. . .

I’d appreciate any thoughts or help any of you have!

Do any of you have any recommendations about ped neuros? Good/bad

experiences?

Thanks.

Jodi