Extreme behavior, arm flapping, weird eye movements-UPDATE

amother

↑ OP ↓

Wed, May 08 2024, 5:02 pm

amother NeonGreen wrote:

Get her evaluated for ASD in order to get services ASAP
Rule out seizures
Might be Pandas
Regardless there’s so much overlap that you might not get to the exact root cause

Try to speak with a dietitian from the Charlie Foundation - the quicker you get her off gluten and casein the better she’ll be. There is more to it than just gluten and casein, that’s why you need a dietitian that is from the Charlie Foundation

I don’t know where to go for an evaluation; if I’m shelling out a ton of money I really need someone very very good. How do I know who to go to?

amother

↑ NeonGreen

Wed, May 08 2024, 5:07 pm

amother OP wrote:

I don’t know where to go for an evaluation; if I’m shelling out a ton of money I really need someone very very good. How do I know who to go to?

I would start with a pediatric neurologist that should be covered by insurance
First rule out all medical causes, especially if there’s seizures involved

amother

↑ OP ↓

Fri, May 10 2024, 12:33 pm

Pediatrician rechecked for strep today, came back negative. Said her throat was red, and he put a bag to collect urine (she refused to go at the Drs office), since she’s been having accidents twice or more per day. But I knew it wouldn’t be a UTI; her accidents aren’t new at all. Guess what? Urine culture came back negative. Now he’s bh determined to figure this out.

I told the Dr right away I knew it wasn’t a UTI. Up until now he’s been telling me that it was still normal for her to have accidents daily. I disagree strongly. Especially when I am shlepping her to the toilet and while she’s peeing she’s screaming that she doesn’t need to go.

Getting more convinced this might be Pandas. But I’m so scared. I don’t want her taking so much medication.

I also don’t know what I want the alternative to be. Can't Believe It

amother

↑ OP ↓

Fri, May 10 2024, 12:34 pm

amother NeonGreen wrote:

I would start with a pediatric neurologist that should be covered by insurance
First rule out all medical causes, especially if there’s seizures involved

Seeing one the following week, be”H. The thing is I suspect absence seizures if she is having them, and I was told sometimes they can’t diagnose before the child turns four years old.

amother

↑ Crystal ↓

Fri, May 10 2024, 12:53 pm

amother OP wrote:

Did you ask for a throat culture to be sent out? With my pandas kids when they flare, the rapids are always negative but the cultures come back positive.

amother

↑ OP ↓

Fri, May 10 2024, 1:07 pm

amother Crystal wrote:

Did you ask for a throat culture to be sent out? With my pandas kids when they flare, the rapids are always negative but the cultures come back positive.

I think they sent it out

amother

↑ OP ↓

Tue, May 14 2024, 4:46 pm

Saw Dr Bluvstein, daughter had an eye-rolling episode during the visit. She’s scheduling a 48-hour EEG at the hospital.
She was so knowledgeable and sweet, explaining everything. Now we wait for the appointment. I feel relieved a bit but also so anxious.

amother

Aster

Tue, May 14 2024, 5:10 pm

amother Crystal wrote:

Did you ask for a throat culture to be sent out? With my pandas kids when they flare, the rapids are always negative but the cultures come back positive.

Pandas is the body's way of fighting strep antibodies, not necessarily strep per se. My daughter with Pandas did not have recurring strep- tested negative every time, but bloodwork showed very high levels. Ask for bloodwork and take it from there.

amother

↑ OP ↓

Mon, May 20 2024, 6:17 pm

Hi imas. We went to the neurologist and my child had an episode during the visit. Dr thinks it’s seizures and we now have a 48 hour EEG scheduled. However, it’s in two months from now and I’m very scared to wait that long. How much damage could happen in that time Sad

Do we think she could safely wait? I’m on a waitlist but I wonder who cancels these tests. What else could I do meanwhile to cross things off my list? I feel like I’m driving the pediatrician crazy and it’s not fair that I feel that way. I need the guidance and support.

amother

↑ Buttercup ↓

Mon, May 20 2024, 6:20 pm

amother OP wrote:

I can't believe they are making you wait that long. We were pushed in sooner with suspected seizures. And she really needs it under control if it's seizures, 2 months is insane. I'd push really hard to get you in sooner. Please drive your pediatrician crazy it's his job to help you navigate this.

amother

↑ OP ↓

Mon, May 20 2024, 6:26 pm

amother Buttercup wrote:

I feel like such a nudge since I’m the one whose been making him crazy since we started using his practice. I know the wait is insane but I really want this Dr to do it.

amother

↑ Pink ↓

Mon, May 20 2024, 6:43 pm

amother OP wrote:

I had this and was too nervous to wait. I'm in nj and I just walked into CHOP emergency room (which does not take my insurance) and they admitted us and immediately did the 48 hour eeg. bh came out clear, and insurance cover it bec was emergency room.

amother

↑ OP ↓

Sun, Jun 02 2024, 6:33 pm

We’re still not closer to answers:( and things are just so wacky. DD used to take 3 hour naps and we had to wake her, now she stopped napping cold turkey and it’s very hard on all of us. Means no Shabbos nap for me, needs constant supervision. Taking her forever to fall asleep at bedtime, and usually mid-screaming.

Pediatrician said to just wait for the EEG next month since he really wants this specific Dr to do it. I can see what I suspect to be episodes sometimes multiple times per day.
Pediatrician also told me to get her into a special Ed preschool for next winter, but the school I want reviewed her CPSE case and they won’t approve her. I just don’t want her to feel different at school, and she needs on-site therapy. Feel like all this fighting is just a lot.

I know if I take her for an evaluation locally she will most likely get an ASD diagnosis, but I really really want to know for sure what’s going on.
Neurologist wants to do an MRI under anesthesia after the EEG, what else could they possibly find out via MRI?

amother

↑ Buttercup ↓

Sun, Jun 02 2024, 6:34 pm

amother OP wrote:

Growths and brain abnormalities

amother

↑ Burlywood

Sun, Jun 02 2024, 6:49 pm

amother OP wrote:

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

amother

↑ Celeste ↓

Sun, Jun 02 2024, 7:05 pm

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.

amother

↑ OP ↓

Sun, Jun 02 2024, 7:29 pm

amother Midnight wrote:

See a developmental pediatrician who can be comprehensive and also look into things like seizures, inflammation, asd at once.

I applied to a waitlist in September, was told it could take a year to be seen.