Extreme behavior, arm flapping, weird eye movements-UPDATE

amother

↑ OP ↓

Mon, May 06 2024, 10:58 pm

amother Moccasin wrote:

She may be presenting as ASD because of Pandas. It can be very confusing.

OP, there is a what's app group where you can get lots of info and support, let me know if you want the contact info to be added to the group.

Thank you so much for this! I would love to join. Will PM you for the info.

amother

↑ OP ↓

Mon, May 06 2024, 11:00 pm

amother Crystal wrote:

You can get her evaluated for asd, and also at the same time get her worked up for pandas

I don’t know where to go for an ASD evaluation. There are just too many places I really want to make sure I go to the best place.

amother

↑ OP ↓

Mon, May 06 2024, 11:02 pm

amother OP wrote:

Already been a year ago; all she summed it up to was behavior. Well, thank you for telling me what I already know. 24 hour EEG showed nothing. I feel like an MRI is definitely needed, just not sure where to go yet.

Actually, it was a 12 hour EEG, just for overnight. I knew straight away it wouldn’t show anything when she’s sleeping. Just a feeling I had.

amother

Junglegreen

Mon, May 06 2024, 11:03 pm

Some hospitals have child study programs and conduct very thorough evaluations. Maybe look into this.

amother

Catmint

Mon, May 06 2024, 11:09 pm

amother Crystal wrote:

You can get her evaluated for asd, and also at the same time get her worked up for pandas

I would actually humbly disagree since ASD is a clinical diagnosis (meaning based on what is observed) she could present as ASD currently but after being on the right medications for PANDAS not have those symptoms.

amother

↑ Dill

Mon, May 06 2024, 11:25 pm

amother OP wrote:

I really appreciate your response! I was thinking Pandas because I see it all over the place, but I wanted to hear what imas were thinking.

If this were my child I would definitely check for PANDAS first, because pandas is curable and relatively easy to fix, while ASD is much harder to treat, and doesn't really go away.

Chasidishlitvak

Mon, May 06 2024, 11:34 pm

A neurolagist can order an MRI.
I would go to one and also do a 24 hour EEG again. (FYI they called my childs EEG 24 hr even though I had to return the equipment in the morning...)

amother

↑ Celeste ↓

Tue, May 07 2024, 1:22 am

Yes go to a neurologist asap.
The symptoms should be enough to get a quick appointment.
Actually, bc of the eye movements you can probably get in quickly to a neuro ophthalmologist who should recommend an mri.
You can call one of the frum referral organizations to get in quickly.

amother

Caramel

Tue, May 07 2024, 2:04 am

amother Catmint wrote:

What’s considered the right medications? Is there a specific one that it has to be?

amother

↑ Crystal ↓

Tue, May 07 2024, 2:59 am

amother Catmint wrote:

Oh I'd be the first one to say this, I believe many cases of asd are actually pandas/ae, but OP said she wants to make sure her child gets services, so I just wanted to say she can do both...

amother

Brown ↓

Tue, May 07 2024, 3:24 am

Pandas! Try ibuprofen around the clock for a few days and see if behavior gets better. It would indicate pans. Where are you located and how do u want to go about treating this. There are Drs that give long term antibiotics. There are functional Drs who test all kinds of things. There is homeopathy practices which specialize in pandas...

amother

Mintgreen

Tue, May 07 2024, 10:25 am

Check Vitamin B12 levels - this includes the following tests:
1 - Serum B12
2 - Methylmalonic acid (MMA)
3 - Homocysteine (Hcy)
4 - Holotranscobalamin II
First 2 tests are most important.

Read the book "Could it be B12?" Pediatric Edition to understand how low levels of B12 can mimic ASD and other psychiatric disorders and is easily overlooked by doctors.

amother

Clematis

Tue, May 07 2024, 11:29 am

Accidents happen to many kids when there’s residual or current strept

I’m the op of the stuttering thread and I went to the doc on Sunday. She said pandas is an autoimmune response and children as young as three don’t even produce autoimmune responses.

She said there’s also sometimes where the child isn’t testing positive for strept because it was just treated but it’s residual in the body. She gave my son clindamycin for two weeks.

Op maybe that’s a possibility to consider?

amother

↑ OP ↓

Wed, May 08 2024, 7:04 pm

We bh have an appointment to a neurologist who is said to be amazing. In the meantime my daughter is refusing to be bathed. She screams when we try putting her in. I’ve offered to sit with her, put bubble bath, she’s shrieking. What could this sudden change mean?

amother

↑ Buttercup ↓

Wed, May 08 2024, 7:05 pm

amother OP wrote:

Many kids with various issues go through a water rejection phase.

amother

↑ OP ↓

Wed, May 08 2024, 7:07 pm

amother Buttercup wrote:

Many kids with various issues go through a water rejection phase.

As a newborn she would shriek when being bathed, it sounded like we were killing her. Very slowly she started loving the bath.
What type of issues are you referring to?

amother

Blush

Wed, May 08 2024, 7:07 pm

amother OP wrote:

Can you please share which neurologist?
Good luck to you

amother

↑ OP ↓

Wed, May 08 2024, 7:15 pm

amother Blush wrote:

Can you please share which neurologist?
Good luck to you

Sure, Dr Judith Bluvstein. We had an appointment in November that I had cancelled since we were already going to a different Dr at that point.
Wonder what she’ll see/say.

amother

↑ Crystal ↓

Wed, May 08 2024, 7:32 pm

amother OP wrote:

Very very common phobia with pandas. We had it ourselves. One of our first symptoms to improve with treatment.

amother

NeonGreen ↓

Wed, May 08 2024, 7:34 pm

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