So fed up 😡 | Imamother

amother

↑ Sienna

Mon, Oct 07 2024, 10:04 pm

amother OP wrote:

Wouldn’t a brain MRI show this, btw? She’s already had one done and it didn’t show any inflammation or anything else.

No, brain inflammation doesn't show up on an MRI unfortunately. There isn't really any good way to test for it except for seeing if symptoms respond to treatments that target the immune system.

It's a myth that p/p always comes on suddenly. Some people have a slow, subtle onset over months or years. The more we learn about AE and autoimmunity, the more we understand the factors that lead to an immune system "tipping over" into autoimmunity, and that these factors build over time.

I don't know OP. The way you describe your daughter right now points strongly to brain inflammation. The fact that she was always delayed doesn't necessarily negate that. However, it seems clear to me she she has more going on *medically* than what the drs, evaluators and therapists are telling you.

If I were you and I was looking for answers, I would go in 2 directions at the same time: genetic workup, and functional workup for AE or a related disorder.

amother

↑ Vermilion ↓

Tue, Oct 08 2024, 8:21 am

amother Tulip wrote:

I am really confused why everyone is trying to convince OP that her child has pandas. A child who has delays from birth along with seizures is not a child with pandas. All you all are accomplished is making an already stressed mother more stressed

I'm actually just trying to convince her to look for one singular underlying cause.

Mold could also do it. Or mold could be a coinfection. It does tend to come together.

amother

Daisy

Tue, Oct 08 2024, 10:39 am

Op I could have written these exact words!

“ And then when we have a good day I end up doubting my every concern. Like maybe it’s not as bad as I think. But then the hard days are horrible. It’s wild.”

Dealing with my son age 9 . At this point he stopped davening and learning. I went to an infectious disease doctor who suspected Lyme based on some basic blood work and just changed to a Lyme specialist and did some more specialty blood work so we could hopefully figure out what’s at the cause of it.
Your words above that on good days I start doubting myself over and over is SO true! I feel like I’m over judging him and not letting him be a child! But the fact that he’s stopped davening and learning (when he used to be top) and mornings as these prove to me that I’m for sure right. This morning let’s say he went out at 8am singing like a lion on top of his lungs and then announcing to all woman waiting for busses that he’s going to his therapist today and ain’t that amazing😥😥

Khaki

Tue, Oct 08 2024, 10:50 am

amother Vermilion wrote:

I have a kid who got ADHD and ASD diagnosis and another with pandas. I do agree that my first thought was pandas. This doesn't mean that an evaluation might not come back with asd, just that a root cause can be pandas.

Ignore the pediatrician and get a well visit however you need it. I use a small practice but do well visit at the ODA because it's just easier for me. All I have to do is change the pcp before the visit. Nobody cares. (Medicaid insurance covers 1 well visit a year)

Take aba and all other help offered. Take the "worst" diagnosis possible so that you get maximum services.

I used a really good private neuropsych covered by insurance but it took a few months on waiting list
In Brooklyn
I submitted that to my doe evaluation

If you want to pay money. The child study center at nyu will have answers when nobody else will. But it's a private evaluation and not the same as doe - it won't give u services

Could you pls pm me? I’d like info on the two neuropsychs you wrote about pls

amother

↑ Sunflower

Mon, Oct 14 2024, 8:14 am

amother OP wrote:

My daughter was delayed since she was a baby, didn’t reach most milestones within normal timeframe. And her seizures didn’t happen from one second to the next; not sure when she developed them but they don’t just appear.
Why would it suddenly be Pandas? Unless it’s more than one thing. Chas V’shalom.

OP there are several anonymous posters who are very sure that every child with delays on this website has pandas. Some may, but still take them with a grain of salt.

amother

↑ OP

Wed, Nov 06 2024, 1:09 pm

amother OP wrote:

We finally have a new meeting scheduled with CPSE but now I’m being told that we need updated well-visits which our Dr only has available for 5 days prior to our meeting which won’t give us any time for the evaluations. Emailing Dr but they don’t seem to understand how hard this is.

My almost-4 year old acts like a 2 year old, takes everything in her mouth so we can’t have small toys for my other kids so they’re missing out.

She talks like a baby and it physically makes me nauseous, can’t understand what she says even though her language used to be above average. She does it purposely seems like. She has accidents daily, currently wears a pull-up to school.

Every time we want to buy the kids something new, we have to think a million times because every single thing gets put into her mouth and just isn’t safe. She got her a cute pen so now she’s covered in pen marks. Recently ruined an outfit with highlighters made for kids her age. I’m so frustrated!!

When I talk to her I feel like I’m talking to a wall. She usually doesn’t respond to her name, and ignores everything we tell her. She asks the same question five times in a row, and then will suddenly just switch topics like she hasn’t just asked something five times.

When we refuse her anything she will tantrum like crazy, will hit me, etc. she doesn’t get most social cues and just doesn’t seem to act age-appropriate.

And now we might not make it to our CPSE meeting. Which btw is beyond stupid since they’ll only consider her for PT, OT and Speech services if she’s very delayed which I don’t think she is. She had EI up to age 3 which she made tremendous progress with but there’s something there that were missing. She has issues but not necessarily the standard issues they want to help with.

Her neurologist says she doesn’t have ASD but is in the “neighborhood.” Does he realize that this doesn’t help us at all? What does it even mean? What am I supposed to do with that information?

Who can help me here? Developmental pediatrician? Neuro psychologist? Pediatrician said regular psychologist but I don’t want it to be a waste of time.

Dd has a diagnosis of epilepsy and developmental delay, and I can’t get a shred of help for her so far and it’s so so hard.

I posted about this a few times in the past but now I need concrete advice, please guide me further!!

mushkamothers

Wed, Nov 06 2024, 2:40 pm

amother OP wrote:

Update: daughter officially got diagnosed with Autism and a language disorder. This was done by a professional and I paid out of pocket so we know it’s legit. Tomorrow we’re meeting with the school district and hopefully getting her into a special Ed preschool.

Imas, I’m looking for a top-notch speech therapist to help us figure out how to help her with speech regression. Any ideas?

Did you say your location? I know a special ed preschool specific for ASD that has top notch providers since they pay to get the best.
Lighthouse in Crown Heights. Feel free to pm.