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

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

↑ 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!!

amother

↑ OP ↓

Thu, Nov 28 2024, 4:48 pm

I can’t believe we’re still absolutely nowhere.
We finally had our meeting the first week of November, and lo and behold my daughter didn’t get approved for special education preschool. I sent a lengthy email to the chairperson. What they approved her for was a SEITT who would sit into her classroom for a month and then sometime in January we would have another meeting to see how it’s going. I put my foot down and said I absolutely refuse. She’s a very bright little girl, I don’t want a shadow for her. She already might be feeling different than the other kids, no way am I going to make her stand out more. They approved her for UPK, I said a smaller school setting isn’t the answer; she’s still in pull-ups, a smaller setting just makes her more susceptible to scrutiny from the other kids.

After sending the email and arguing again by phone, the district decided to allow a letter from the school stating that she wasn’t doing well in the classroom.

Now we need a letter from the school. Still waiting. What I don’t understand is why EVERYTHING IS TAKING SO DARN LONG.

We applied for ABA according to what her neurologist says but she is still arguing that daughter does not have ASD. How do you recommend aba if someone doesn’t have asd?

Every day daughter comes home I feel like crying. She slips into baby talk, noises and grunts and I feel like my heart is just not beating anymore. It’s broken beyond. My other kids are telling me how hard it is with daughters daily meltdowns and it just breaks my heart further.

I asked my pediatrician for a script to check for PANDAS since I really do want to know if anything physical is going on. I really want to get it done asap because I’m just so lost and I can’t take it anymore.

And it feels like not a soul cares and wants to help us get the help we need.

On top of everything we applied for services and it’s taking forever also, and the amount of PAPERWORK needed for everything and I’m just one person. Literally can’t anymore.

↑ smarty skirt ↓

Thu, Nov 28 2024, 9:53 pm

Please, if your child is slipping into baby talk etc....is there a new baby? Does your child have speech issues that might be more pronounced than the norm for her age? If your child has speech issues then I would definitely request audio processing exam, if you are in NY I recommend Dr. Donna Geffner. Do not know your specifics so I cannot understand well what is going on with your child. Therefore it is harder to give ideas. Your child is in pre school so it is great that you are starting early. I would not accept any general labels like ADHD, I would find out EXACTLY what behavioral optomotrists and audiologists and speech therapists and OT's are saying about my child. You want to dot all your I's and have everything in place to be taken more seriously in general if you have not already. Wish I knew more years before I did!

↑ smarty skirt ↓

Thu, Nov 28 2024, 10:01 pm

Also, I don't know if you are in NY, but writing letters, you can forward the same letter to them again by email and say second request, then do that for the third request, try to be patient and lower your expectations, in other words, expect to wait. At least you are starting early! Make sure you know from your educational advocate how long they can legally take to respond to you, I am referring not to the school here. Try not to be so impatient that you jump the gun or do cart before the horse. Pace yourself, it is normal to work everyday on getting services for your kid, also make sure you get a caseworker to help with some of the phone calls to school and a counselor for the child to communicate with the school if needed. Make sure to maybe do a Magic 123 program and a Miriam Adahan gratitude victory book for example with your child......you need mostly positive tools!

↑ smarty skirt

Thu, Nov 28 2024, 10:04 pm

amother

Chambray ↓

Thu, Nov 28 2024, 11:29 pm

amother OP wrote:

Hi there, a few things to note as I read through the responses posted here. There seems to be a lack of information or knowledge in those that are posting.
#1 it is extremely common in people with seizure activity that they will exhibit regressions and that they need to relearn skills they knew previously. However, once they are taught it again, many catch on faster than they did initially as the synapsis are still there
#2 when an individual is experiencing a seizure, this can impact their behavior, which would be the reason for your child's varying behaviors dependent on the day - this can be very much so linked to the amount of seizure activity going on.
#3 if you are saying that she exhibited signs of delay right from birth, this is no sudden unset which is the core principal of PANDAS. and BE AWARE. there are so many parents that run after this diagnosis in the hope that this will cure their child. In the meantime, time is passing and they are losing out on an opportunity they will never get back - intervention when the child is young. The amount of people that jump to this conclusion is both dangerous and hurtful.
Please do your research and speak to people that are qualified.

amother

↑ Chambray

Thu, Nov 28 2024, 11:45 pm

amother OP wrote:

do u have the recommendation on paper? I dont think u need anything else. u can just send that straight to the aba agency
im familiar with the field, if u have an anon email I can reach out to I would be glad to share more info