Extreme behavior, arm flapping, weird eye movements

amother

Wed, May 08 2024, 8:02 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, 8:07 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

Fri, May 10 2024, 3:33 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

Fri, May 10 2024, 3:34 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, 3:53 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

Fri, May 10 2024, 4:07 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

Tue, May 14 2024, 7:46 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, 8:10 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.