So fed up 😡 | Imamother

amother

↑ OP ↓

Mon, Sep 30 2024, 7:19 am

Thank you for each and every response, the comments are really helpful and appreciated. I also really appreciate seeing that whatever I feel is normal and we’re on the right path.
So far this morning I called two different agencies and left messages for both, there’s one more I want to try.
I just hope that agencies could help with the evaluations and won’t push us away yet again.

amother

↑ OP ↓

Mon, Sep 30 2024, 10:01 am

Update: we bh have an appointment with a psychologist to get the ADOS test done right after Yom Tov iyh, which still falls within our timeframe for our CPSE meeting.
Chasdei hashem!

This sets us back nearly $3K but willing to do whatever is needed to help my daughter.

I just hope this is the right person to get this done with.

The district should recognize a diagnosis from a licensed psychologist correct?

Still no answer from pediatrician but was told they will expedite our request.

amother

↑ Mistyrose ↓

Mon, Sep 30 2024, 10:13 am

amother OP wrote:

But apparently even if it comes back within normal range people are saying it could still be pandas. Is that accurate?

Why don't you at the least choose to not worry about it if it comes back in normal range and choose to address it if it does come back abnormal. That should give you some clarity.
Coming from a mom whose child came back positive for mycoplasma, had lots of silly, abnormal, explosive and out-of-control behavior, and is doing a lot better now b"h that we've been addressing it.

amother

↑ Vermilion ↓

Mon, Sep 30 2024, 10:20 am

amother OP wrote:

you want a neuropsychologist not just a regular psychologist
the DOE accepts it as evidence but will still do their own evaluation
seriously you need a new pediatrician

re pandas bloodwork, in extreme cases it could be buried in the body and needs more sensitive labwork or other testing. you will be just fine going and doing regular labs. cannot hurt, only help give you more information. it may not be strep, it can be something else, you won't know unless you do it.

amother

↑ OP ↓

Mon, Sep 30 2024, 10:52 am

amother Vermilion wrote:

Just for a diagnosis I can’t see a psychologist? I’m anyway trying to see a neuro psychologist but no appointment yet.

amother

↑ Vermilion ↓

Mon, Sep 30 2024, 11:20 am

amother OP wrote:

Just for a diagnosis I can’t see a psychologist? I’m anyway trying to see a neuro psychologist but no appointment yet.

Someone can correct me if I'm wrong but I'm not sure a regular psychologist can diagnose asd or adhd in kids?

smarty skirt ↓

Tue, Oct 01 2024, 9:01 pm

This sounds to me like an auditory processing problem which can be labeled under the umbrella of ADHD primarily attention defecit. It is not helpful to have a large label. It is more helpful to address a proper hearing and auditory processing exam. The board of ed can fund it if warranted, recommended with enough proof in NY. In NY Donna Geffner who is an audiologist and speech pathologist who practices in Long Island can perform an audiology exam that unlike other simple exams will test for the ability to hear when there is background noise. This will affect speech, picking up on cues, directions and make the child more sensory in other ways to compensate. This test is worth it because in school the teacher can amplify to the student. Save yourself trouble down the road and get the testing done.

In addition, I recommend an eye exam from a behavioral optomatrist, in NY there is ODA Dr. Warkovsky who taught at Suny Vision Center for 34 years who is top notch and also the Suny Vision Center in Manhattan. This helps a child to be more aware, focused, spatially etc....

It is best to start early, the nervous system can grow better with correct support and eyes can get worse when caught late, ex. astigmitism can progress to eye tracking problem for example.

amother

Aquamarine

Tue, Oct 01 2024, 9:49 pm

I’m seeing that no one else mentioned this so I am going to put it out there.
I had a student who was diagnosed with epilepsy.
The meds stopped the seizures but her behaved was horrifying.
Calm kid started fighting regressing in age…

Seizures effect the brain
And the meds if they are strong enough to stop seizures can mess with the brain.
I would make sure that the specialist that prescribed the seizure meds is aware of the recent behavioural issues.
May hashem give you the wisdom to get the bottom of this

amother

↑ Hyssop ↓

Tue, Oct 01 2024, 10:29 pm

amother Aquamarine wrote:

Yes and no.
Depends on the focal point of the seizures in her brain.

amother

↑ OP ↓

Sat, Oct 05 2024, 7:13 pm

amother Mistyrose wrote:

Because I’m not looking to subject my daughter to unnecessary bloodwork. I can’t take risks with her, each medical procedure needed for her is difficult.

I’m not sure if you can understand it, but it’s really difficult to do tests, as simple as they may seem, to a sensitive child. She remembers every single detail, doesn’t let us take dressings off for days after, and even then it’s a fight. For her even a slight pinch feels like she’s being hurt very badly.

She has enough going on what with needing EEGs so far every three months, I really don’t want any extras unless absolutely necessary.

I’m sorry Mistyrose, I thought I was replying to someone else! I’m sure you can understand, with your own child’s behavior issues…

amother

↑ OP ↓

Sat, Oct 05 2024, 7:14 pm

amother Aquamarine wrote:

That was for sure our first thought, but her neurologist says the dose of medication isn’t strong enough to warrant all of the new symptoms. And much of it did start before the meds as well.

amother

↑ OP ↓

Sat, Oct 05 2024, 7:21 pm

smarty skirt wrote:

Interesting. She already has a diagnosis of sensory processing disorder, don’t think it’s auditory processing as well but who knows. She did fail two hearing tests but I believe because she wasn’t cooperating. They mentioned wanting to do a sedated ABR but I’m not sure I want it done.

amother

Dimgray

Sat, Oct 05 2024, 7:27 pm

amother OP wrote:

That was for sure our first thought, but her neurologist says the dose of medication isn’t strong enough to warrant all of the new symptoms. And much of it did start before the meds as well.

It’s possible that her problems aren’t side effects of the medication she’s on, but they might be a result of the epilepsy. It can depend on where in the brain the seizures are. I’m surprised your doctor didn’t consider the possibility that her issues might have started with the seizures especially because you’re describing regression. You make it sound as if she lost skills she already had. When you do go for an evaluation you should mention the seizures and give them an idea when they started, what meds she’s taking and when she started taking them, and any other information you have about her condition. It doesn’t sound like your pediatrician is taking this into consideration or being helpful. You might want to consider switching.

amother

Waterlily

Sat, Oct 05 2024, 7:31 pm

amother Aquamarine wrote:

This is factually incorrect. Seizures mess with the brain! Often in kid they can regress post seizure and a little part of the brain never recovers which is why they lose skills. The meds are not what is messing with the brain.

amother

↑ OP ↓

Sat, Oct 05 2024, 7:36 pm

Update on pediatrician: bh they provided all the necessary prescriptions for the evaluations. So that’s set.

I filled out intake paperwork for developmental pediatrician and they said the waitlist is 36 months. (!!!!!).

Now what. I called a few different neuro psychologists/anyone else who was recommended but no one got back to me.

Would I get more clarity regarding toileting issues if the ADOS confirms ASD?