Extreme behavior, arm flapping, weird eye movements-UPDATE

amother

↑ OP ↓

Sun, Jun 02 2024, 7:30 pm

amother Burlywood wrote:

Hugs. If you get the ASD diagnosis CPSE will take her and you will get free services so it might be worthwhile?

True, most likely this would pave the way for approval of services but I’m very hesitant…

amother

↑ OP ↓

Sun, Jun 02 2024, 7:32 pm

amother Celeste wrote:

Call a frum medical referral agency, say this is an emergency and ask them to get you in sooner.
I would not wait.
Don’t worry about being a nudge, this is where you advocate for your child.
If necessary go into an emergency room.

Pediatrician is saying there won’t be any changes with waiting. I nudged whether there could be any brain damage he said no… and EEGs need to be read very carefully because they could miss the slightest thing.
I’ve borrowed books from the library meanwhile explaining EEG and different methods of treatment for seizures. I like to be prepared for what might come.

amother

↑ OP ↓

Sun, Jun 02 2024, 7:35 pm

I also plan to sit down with the principal of her current preschool and explain what she’s having done and what the outcome might be. She’s extremely understanding and has helped us in the past with her toileting issues (which we’re still struggling with, more than 9 months in 😭😭😭).

amother

↑ OP ↓

Sun, Jun 02 2024, 7:42 pm

amother Rose wrote:

Have you looked into the nemechek protocol? But you need to be able to control your kid's diet in order to try it .

Never heard of it, could you elaborate?
I want to remove dairy and gluten from her diet if there is reason for it, once I get more clarity.
There’s just so much we fight her with, she (and us) can’t handle unnecessary fights if we could help it. But will most likely go down dietary change route.

amother

↑ Celeste ↓

Sun, Jun 02 2024, 7:51 pm

amother OP wrote:

I hear that.
However if it is something other than a seizure disorder waiting May not be a good idea.
Unfortunately speaking from experience of a brain tumor, where we trusted the dr who told us to wait for the MRI. The waiting caused further long term damage.
I’m not sure why you can’t have the EEG read a second time by this doctor a month later, as a second opinion?
(But maybe administering the EEG by this specific dr also makes a difference?)

amother

↑ OP ↓

Sun, Jun 02 2024, 7:54 pm

amother Celeste wrote:

Wow I’m so so sorry you went through that! :(Wishing a full recovery and refuah sheleimah!!

We were told in order to get the MRI approved we need to have the EEG done first, because it’s done under anesthesia and there needs to be significant proof. But you’re right, I will call hospital again tomorrow.

amother

↑ Pink

Sun, Jun 02 2024, 9:14 pm

if you are concerned, I both eeg and MRI can be given STAT with an emergency room visit - at the same hospital you have your appt in.
you can always get a second opinion afterwards.
I did this and happens to be the Dr. who did the rounds when we were admitted was the specialist I wanted:)

amother

Leaf ↓

Sun, Jun 02 2024, 9:32 pm

Please email Dr bluvstein directly. She can probably get you in sooner if she feels necessary.
BTW she diagnosed my 10 month old with absence seizures just from a 30 min eeg. She's really great and an amazing doctor.
If you need her direct email I can give it to you. She usually answers that day.

amother

↑ OP ↓

Mon, Jun 03 2024, 5:05 am

amother Leaf wrote:

Wow I’m happy you got answers! How is your child doing now? Only share if you’re comfortable.
I would love her email address please. Any way to share it?

amother

↑ Clover ↓

Mon, Jun 03 2024, 5:35 am

amother OP wrote:

Wow I’m happy you got answers! How is your child doing now? Only share if you’re comfortable.
I would love her email address please. Any way to share it?

Any epilepsy dr can diagnose absence seizures from an 30 min eeg if the child is having them that frequently. They also have the kids hyperventilate which often induces absence seizures. It’s not that complicated. I don’t know why your pediatrician is giving you a hard time about writing an order for an eeg.

amother

↑ OP ↓

Thu, Jun 27 2024, 12:17 pm

Being home with her all week literally feels like I’m on the way to the loony bin.
And the worst part? She’s somehow a dolly at school so they think im crazy.
Today there are meltdowns every 15 mins, I'm not exaggerating.
Feel like I'm losing it. Dh can’t even help out. Shabbos and supper has to happen, and none of it is happening.
Told Dh to call the neurologist because I feel like I need support and not be the only one making the calls and taking care of stuff. I want them to get this going already because there’s nothing I can do before I get this eeg done.
And I can’t even get pearler beads of other fun activities for other siblings home because this girl takes everything into her mouth and it’s not safe.
Sorry for the long vent I just feel like I can’t handle it anymore, especially when issues aren’t obvious to others always. So so hard.

amother

↑ Crystal ↓

Thu, Jun 27 2024, 12:30 pm

OP when is your neurology appointment? You weren't able to get in sooner?

I know it sounds like a whole lot more than pandas going on, but on the off chance it's some serious brain inflammation at play did you ever try motrin to see if it helps with the behaviors?

amother

Amaranthus

Thu, Jun 27 2024, 3:34 pm

Hydrocephalus causes seizures ( fluid on the brain)
It is characterized by this nmeonic
Wet- accidents
Wacky - very odd behaviors
Wobbly - disturbance in the way they walk

If these symptoms fit your daughter, please take her to the ER ASAP.
She needs some sort of brain imaging

Refuah shelaimah.

amother

↑ OP ↓

Thu, Jul 11 2024, 8:28 am

Saw a psychiatrist today who unofficially diagnosed ASD. She would like for us to get a more in depth evaluation at an ABA agency. I already made the calls, left messages.
I still feel so unsure but I know this might be the right step.