So fed up 😡 | Imamother

amother

Tulip ↓

Sat, Oct 05 2024, 11:40 pm

Having worked in an ABA environment, there were a number of children with autism and epilepsy. There was no clear idea (from the parents , doctor or the staff) if the symptoms were a result of seizures or autism. This came up when staff questioned if the ABA approch would help if the behaviors were a result of seizures. Regardless there was progress made using the ABA model. Please put your daughter in a special ed school, she will get the individualized help she sounds like she desperately needs!

amother

↑ Sienna ↓

Sun, Oct 06 2024, 3:40 pm

amother Tulip wrote:

Since autism is just a constellation of symptoms with various different causes, it makes complete sense to say that seizures can cause asd.

And since ABA targets behaviors regardless of causes, why shouldn't it work the same way?

amother

↑ OP ↓

Mon, Oct 07 2024, 4:53 pm

PT and OT eval took place today, bh. Per the PT she says my daughter has a head tilt (never noticed it), and wants us to check it out. Bh we had already done an MRI so we know it’s nothing medical. She says looks like her eyes don’t coordinate and we need an Ophthalmologist. We had been thinking if she needs a neuro Ophthalmologist so thinking if we should look into that. Daughter also didn’t respond a lot to the PT, so we need to look into her hearing again. She had already had two hearing tests, I think the final results was mild to moderate hearing loss.

OT says she thinks daughters behaviors are all behavioral. She says because she could turn her baby talk on and off then she likely is doing it consciously.

It was heartbreaking for me though, daughter was making noises and grunting a lot instead of talking.

But sometimes I wonder if it’s the same little girl, because sometimes she’s ok and other times she’s just so not. It’s so confusing, does this make any sense?

amother

↑ Sienna ↓

Mon, Oct 07 2024, 6:22 pm

amother OP wrote:

I've been in the special education field for a long time. There are many excellent and wonderful providers, but unfortunately most are very uninformed on the medical causes of developmental delays and how those medical causes will present behaviorally.

Just because someone is able to control a behavior for a short amount of time doesn't mean it's not involuntary, or that it's not neurological.

Your daughter clearly has a whole neuro package going on. To me that proves that the behaviors are neurological as well.

amother

↑ OP ↓

Mon, Oct 07 2024, 6:49 pm

amother Sienna wrote:

Thank you for chiming in! I’m so confused at this point. What other boxes do I need to tick off? What else do I need to look at here?

amother

↑ OP ↓

Mon, Oct 07 2024, 6:52 pm

amother Sienna wrote:

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.

amother

↑ Sienna ↓

Mon, Oct 07 2024, 6:58 pm

amother OP wrote:

Thank you for chiming in! I’m so confused at this point. What other boxes do I need to tick off? What else do I need to look at here?

What mistyrose is saying, much as you don't want to hear it. Because it would be a singular unifying cause behind allll the different issues you're seeing. Behavioral, developmental, neurological, psychological, physiological. Doesn't it make more sense that there's one process driving allllll these various issues, rather than that she unluckily and coincidentally has so many random things going on?

And when I use the p word (lol) I'm using it as an umbrella term for all sorts of autoimmune encephalitis, not just the strep kind. Her overall presentation has all the markings of an immune attack on her brain.

amother

↑ OP ↓

Mon, Oct 07 2024, 7:14 pm

amother Sienna wrote:

I honestly hear what you’re saying. You all could be right, for sure. It’s just that we’ve been dealing with these issues for since she was very young, so to me it doesn’t seem like anything that would just pop up. Also, is the P word (lol! Smile

on the rise? Like why is it so popular now? Genuinely asking.
Also, if it was that, wouldn’t her behavior be insanely crunk all day, every day?

amother

↑ Sienna ↓

Mon, Oct 07 2024, 7:22 pm

amother OP wrote:

on the rise? Like why is it so popular now? Genuinely asking.
Also, if it was that, wouldn’t her behavior be insanely crunk all day, every day?

What do you mean it doesn't seem like anything that would just pop up.

Yup, autoimmune encephalitis is definitely on the rise along with all autoimmunedisorders, but that a discussion for another day, isn't it?

As with all autoimmune disorders, symptoms can wax and wane throughout the day, month, year, so it makes total sense that she has better moments and worse ones, better days and worse. In fact, that's really very common with p/p.

amother

↑ Vermilion ↓

Mon, Oct 07 2024, 7:22 pm

amother OP wrote:

on the rise? Like why is it so popular now? Genuinely asking.
Also, if it was that, wouldn’t her behavior be insanely crunk all day, every day?

She could have had strep or a virus as a baby and you missed it. Contrary to common belief it's not actually overnight, just acute onset.

Pandas is gaining popularity because it's becoming more well known and there's also an explosion of understanding in root causes. In another few years (not 5 but maybe 50) many mental illnesses will be resigned and be replaced with the actual causes. For example.

The nature of inflammation is on/off thats exactly how you know it's inflammation. Whether of the bones (arthritis) or the brain there's always going to be ups and downs.

amother

↑ OP ↓

Mon, Oct 07 2024, 8:51 pm

amother Sienna 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.

amother

↑ Vermilion ↓

Mon, Oct 07 2024, 9:38 pm

amother OP wrote:

Pandas is a stupid name that's used to refer to brain inflammation in juveniles. For adults it's called autoimmune encephalitis. Maybe she doesn't have pandas (which is strep specific). We're saying she likely may have some kind of brain inflammation.

The torticollis should also be looked into btw. It may affect the eyesight.

If you want to see OT then I suggest the guttman sisters in Flatbush- handsonapproaches.com they have a more root-based approach

amother

↑ OP ↓

Mon, Oct 07 2024, 9:47 pm

amother Chocolate wrote:

When my dd was on Keppra it affected her bladder continence.

A pelvic pt helped. She couldn't feel when she had to go.

Oh wow, hope your daughter is doing well!
My daughters urinary symptoms (and most of her other symptoms) started before she began taking the medication.

amother

↑ OP ↓

Mon, Oct 07 2024, 9:48 pm

amother Vermilion 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.

amother

↑ Chocolate

Mon, Oct 07 2024, 9:53 pm

amother OP wrote:

Oh wow, hope your daughter is doing well!
My daughters urinary symptoms (and most of her other symptoms) started before she began taking the medication.

BH she has grown out of her epilepsy and been seizure free for several years.

My dd was diagnosed at 12 months, so not yet toilet trained, but she couldn't feel bladder fullness. The medication also had behavioral side effects. (Long tantrums etc). But if your dd had before the medication it isn't that. Though lots of seizure meds do have behavioral side effects or can make behaviors more intense.

Wishing you chizzuk and answers and that your daughter should have a refuah where needed.