Teen with epilepsy

amother

Sun, Jun 19 2022, 9:18 am

Our beautiful, tall, happy-go-lucky son was just diagnosed with epilepsy.
Is there a frum support group for parents of children with epilepsy?
Any resources available to the frum community?

amother

Eggplant

Sun, Jun 19 2022, 9:36 pm

yes, there is an amazing organization somech noiflim.The number to call 8455371039.

amother

Celeste

Sun, Jun 19 2022, 9:42 pm

I’m so sorry Sad

. Did it start following an illness? Was there any apparent trigger?

amother

Sun, Jun 19 2022, 9:50 pm

Thanks Egglplant!
No there weren't any triggers and it didn't follow any illnesses that we know of.
Kind of out of the blue.

amother

NeonOrange

Sun, Jun 19 2022, 9:56 pm

amother [ OP ] wrote:

Thanks Egglplant!
No there weren't any triggers and it didn't follow any illnesses that we know of.
Kind of out of the blue.

Did you take a ctscan of his brain?
Did you see a neurologist?
DH was also diagnosed “out of the blue” and turns out he always had a cavernoma in his brain (since birth, but he wouldn’t know) that suddenly bled before he had his first seizure. So it may seem out of the blue but there might be something going on... refuah sheleima.

amother

Diamond

Sun, Jun 19 2022, 9:58 pm

BrainStorm is an epilepsy and seizure related chat. We help each other on this often challenging journey, answering questions, sharing tips, and giving and getting support.

https://chat.whatsapp.com/CtXq.....405JI

amother

Sun, Jun 19 2022, 10:07 pm

Yes, we've been to neurologists and have gone thru numerous scans and EEGs.

Is BrainStorm a frum support group?

amother

Celeste

Sun, Jun 19 2022, 10:09 pm

Can I gently recommend a workup for Lyme and autoimmune encephalitis? These are not things most drs will look for, yet more and more literature is coming out all the time how these disorders alone can cause seizures. Seizures are usually a symptom of something deeper going on.

amother

Sun, Jun 19 2022, 10:14 pm

thanks for the suggestion!
The doctor did test for Lyme disease way back after the 1st episode... maybe I'll ask again? Didn't seem to point in that direction.

amother

Hyacinth

Sun, Jun 19 2022, 11:26 pm

I don’t want to high jack the thread but can you elaborate on the tests and if there is a “warning “ before the seizure?
Dd just had 1 and starting tests now
Anything to do with covid?
Tia

amother

Mon, Jun 20 2022, 12:33 am

I'm so sorry for you and your daughter! Hope she has a refuah sheleimah.

No, this wasn't covid related.

amother

Diamond

Mon, Jun 20 2022, 12:39 am

amother [ OP ] wrote:

Yes, we've been to neurologists and have gone thru numerous scans and EEGs.

Is BrainStorm a frum support group?

Yes. I have a cousin and had a great grandfather with seizure issues. It sometimes is genetic and sometimes not.

amother

Amaranthus

Mon, Jul 03 2023, 6:31 am

OP, it looks like we're in the same situation. If you're still around I'd love to hear how it's going.

amother

Latte

Mon, Jul 03 2023, 7:17 am

amother NeonOrange wrote:

My DH has the exact issue with cavernoma causing seizures... Would love to be in touch with you about this

amother

Dandelion

Mon, Jul 03 2023, 10:37 am

amother Latte wrote:

My DH has the exact issue with cavernoma causing seizures... Would love to be in touch with you about this

Mine has as well. Sad

He’s on medication so the seizures are controlled. I’m not comfortable discussing it privately. Do you have specific questions? I’m fine discussing it here.

amother

Canary

Mon, Jul 03 2023, 12:03 pm

Does anybody feel comfortable talking about how often the seizures occur? Do the seizures still happen with medication?

amother

Stone

Mon, Jul 03 2023, 12:05 pm

I had epilepsy as a teen but outgrew it. It’s been many many years since my last seizure and I’m not on any medication.

bs6208

Mon, Jul 03 2023, 12:07 pm

Does the Brainstorm whatsapp chat still exist? The link posted above said the invite link has been reset. I'd love to join. I have a DD with epilepsy. If anyone has it can you post it here or pm me with it?
Thanks!

amother

Almond

Mon, Jul 03 2023, 12:38 pm

My MIL has had epilepsy her whole life. She tried to control it for some years by discovering that there are certain trigger foods. She has been on some diets. In the end she had a brain surgery, but some foods she will still not eat.

amother

Latte

Mon, Jul 03 2023, 12:55 pm

amother Dandelion wrote:

Mine has as well. Sad

He’s on medication so the seizures are controlled. I’m not comfortable discussing it privately. Do you have specific questions? I’m fine discussing it here.

Sure!
I'm sorry you are going through this too:(
Are you traumatized from it? I am majorly. I was there for all but 1. I literally wake him up to ask if he's ok.
Has it happened again?
Unfortunately my husband has had about 5. He's on medication and they keep on tweaking it. Each time we hope it's the last and the meds are preventing it. And if course 6 months of no driving after each one. The biggest issue is the dear that ch'v it can happen while he is driving