So fed up 😡 | Imamother

amother

↑ Sienna

Mon, Oct 07 2024, 7:04 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.

Tzutzie

Tue, Oct 08 2024, 4:42 am

Do you have mold issues in your home?

Your child sounds exactly like my friends son.
He developed almost identical issues, including epilepsy, due to mold exposure in the home.

After detox and treating inflammation, the kid still has neurological and behavioral issues. But he's getting better over time.

Refuah sheleima to your daughter.

amother

↑ Vermilion

Tue, Oct 08 2024, 5:21 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, 7:39 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, 7:50 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, 5:14 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

↑ Mistyrose

Mon, Oct 14 2024, 5:24 am

amother Sunflower wrote:

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.

definitely worth ruling out