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-> Parenting our children
-> Our Challenging Children (gifted, ADHD, sensitive, defiant)
amother
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 Sun, Sep 29 2024, 12:55 pm
We finally have a new meeting scheduled with CPSE but now Iâm being told that we need updated well-visits which our Dr only has available for 5 days prior to our meeting which wonât give us any time for the evaluations. Emailing Dr but they donât 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 canât have small toys for my other kids so theyâre missing out.
She talks like a baby and it physically makes me nauseous, canât 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 isnât safe. She got her a cute pen so now sheâs covered in pen marks. Recently ruined an outfit with highlighters made for kids her age. Iâm so frustrated!!
When I talk to her I feel like Iâm talking to a wall. She usually doesnât 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 hasnât just asked something five times.
When we refuse her anything she will tantrum like crazy, will hit me, etc. she doesnât get most social cues and just doesnât seem to act age-appropriate.
And now we might not make it to our CPSE meeting. Which btw is beyond stupid since theyâll only consider her for PT, OT and Speech services if sheâs very delayed which I donât think she is. She had EI up to age 3 which she made tremendous progress with but thereâs something there that were missing. She has issues but not necessarily the standard issues they want to help with.
Her neurologist says she doesnât have ASD but is in the âneighborhood.â Does he realize that this doesnât 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 donât want it to be a waste of time.
Dd has a diagnosis of epilepsy and developmental delay, and I canât get a shred of help for her so far and itâs so so hard.
I posted about this a few times in the past but now I need concrete advice, please guide me further!!
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amother
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Sun, Sep 29 2024, 1:21 pm
Go into any urgent care and they'll do a well visit for on the spot
Sorry for what your going through
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amother
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Sun, Sep 29 2024, 1:25 pm
| amother Firethorn wrote: | Go onto any urgent care and they'll do a well visit for on the spot
Sorry for what your going through |
They could do that?? But also our pediatrician doesnât allow us to see any urgent care while under their supervision.
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amother
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Sun, Sep 29 2024, 1:28 pm
| amother OP wrote: | | They could do that?? But also our pediatrician doesnât allow us to see any urgent care while under their supervision. |
That's so interesting that they don't let đ¤ will they really check into it and figure out if you go? And if yes, what will they do? This seems to important to let that stop you ...
I've done it all the time...
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teachkids
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Sun, Sep 29 2024, 1:29 pm
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Did you explain to the ped why you need a checkup asap? If they can't work with you it may be time for a new ped
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amother
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Sun, Sep 29 2024, 1:30 pm
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Just call them before you go and make sure they do it. The ones near me (Boro park) do it...
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amother
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Sun, Sep 29 2024, 1:30 pm
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Definitely sounds like High functioning ASD and ADHD. My child is the same. Go back to the neurologist and get that diagnosis. Keep being her advocate and get as much help as possible. Donât give up! She can benefit from ABA and other supports OPWDD can offer. Hang in there. I know how hard it is
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amother
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Sun, Sep 29 2024, 1:31 pm
| amother OP wrote: | | They could do that?? But also our pediatrician doesnât allow us to see any urgent care while under their supervision. |
This is a desperate situation. Just go. Anyway how will your pediatrician know you went to an urgent care
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amother
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Sun, Sep 29 2024, 1:34 pm
| amother Magenta wrote: | | Definitely sounds like High functioning ASD and ADHD. My child is the same. Go back to the neurologist and get that diagnosis. Keep being her advocate and get as much help as possible. Donât give up! She can benefit from ABA and other supports OPWDD can offer. Hang in there. I know how hard it is |
Neurologists are not the best for ASD testing. CPSE should be able to fast track you to a developmental pediatrician. Also you know she is delayed, so view her as a 2 yo so you are less mad at her for doing things on purpose. She has epilepsy?
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amother
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Sun, Sep 29 2024, 1:38 pm
| amother Magenta wrote: | | Definitely sounds like High functioning ASD and ADHD. My child is the same. Go back to the neurologist and get that diagnosis. Keep being her advocate and get as much help as possible. Donât give up! She can benefit from ABA and other supports OPWDD can offer. Hang in there. I know how hard it is |
Been suspecting HF asd for a very long time⌠itâs just somehow impossible to diagnose with girls I was told. I really donât want to consider ABA if I donât know for certain that she does have ASD. I heard too much negative things about it. I know if she was low-functioning then it might be a godsend for herâŚ
Neurologist just doesnât want to diagnose. Iâm fighting for this child so so much itâs sad at this point that nothing is coming of my fighting.
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amother
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Sun, Sep 29 2024, 1:39 pm
| amother Magenta wrote: | | This is a desperate situation. Just go. Anyway how will your pediatrician know you went to an urgent care |
Thing is the reason we need the well-visit is because we then need prescriptions for evaluations from our pediatrician. And an urgent care wouldnât give them even if they did do the well-visit. So it wouldnât help us here I thinks.
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amother
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Sun, Sep 29 2024, 1:42 pm
| teachkids wrote: | | Did you explain to the ped why you need a checkup asap? If they can't work with you it may be time for a new ped |
Funny thing is pediatrician was busy telling me to keep messaging the school district etc and he knows how hard this is for us.
Plus I was thinking to see a urologist to rule out anything physical but he wants her evaluated first. But isnât being responsive when I tell him that the psychologist he recommended isnât getting back to me.
Iâm taking my kids for sick visits today and will demand an in-person visit with him because this isnât working otherwise.
And did I mention Iâm 7.5 months pregnant with kidney issues and making myself sick over this. Itâs just not fair!!!!!!!
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giftedmom
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Sun, Sep 29 2024, 1:46 pm
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My first thoughts are regressive autism (if you say her speech used to be above average) or some version of PANDAS.
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amother
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Sun, Sep 29 2024, 1:47 pm
| amother Sunflower wrote: | | Neurologists are not the best for ASD testing. CPSE should be able to fast track you to a developmental pediatrician. Also you know she is delayed, so view her as a 2 yo so you are less mad at her for doing things on purpose. She has epilepsy? |
The only thing CPSE wants to get done is PT, OT, SLP, classroom observation and education evaluation.
She had many delays physically, which also translated to emotional delays. Until she didnât start EI therapies she didnât wave, follow my finger, point, it was like there was no one home. So they gave her a developmental delay diagnosis I guess because sheâs still not toilet trained. Itâs very confusing because she is a very bright little girl at this point. But we are all really struggling to understand what the issue is and how to help.
She has epilepsy that is being controlled with medication.
The special Ed preschool we were considering for her said that if CPSE doesnât see significant delay then her two current diagnosis wonât be enough to get her eligible for special Ed preschool.
I donât know what on earth else Iâm supposed to do!! Iâm not excited to just get a diagnosis slapped on, I really want in-depth very informative evals done.
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amother
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Sun, Sep 29 2024, 1:49 pm
| giftedmom wrote: | | My first thoughts are regressive autism (if you say her speech used to be above average) or some version of PANDAS. |
Itâs very hard to know because it seems more like behavioral regression vs asd regression. But I could be wrong of course, what do I know.
Iâm terrified of Pandas. People are saying that even if bloodwork comes back fine it could still be pandas. So how do we know for certain?
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amother
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Sun, Sep 29 2024, 1:49 pm
| amother OP wrote: | | Thing is the reason we need the well-visit is because we then need prescriptions for evaluations from our pediatrician. And an urgent care wouldnât give them even if they did do the well-visit. So it wouldnât help us here I thinks. |
Try phc urgent care
4426 18th Ave #1201
(718) 854-0001
I have a regular primary care doctor for my kids that I go for well visits and shots ones or twice a yr and I go to the above place whenever a kid is sick or I need a letter or referral for something (and don't want to wait at our regular doctor that usually has a crazy long wait time). They neve give me trouble...unless it's bec I'm just there often? Worth a shot to ask them if your desperate.
Also not sure why you need prescriptions yet before she is approved for anything. You have a right to get her elevaluated. I had a few of my children get services (one is even in a special Ed school) and we never needed that (only for EI and that was only after approval for actual therapy services - they like to try to get insurance to cover some of it)
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amother
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Sun, Sep 29 2024, 1:58 pm
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Also if your looking for an evaluation though Medicaid you can try Rose Kennedy Child Develop Center of Albert Einstein in The Bronx. They have developmental pediatricians on staff who are part of their evaluation team.
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amother
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Sun, Sep 29 2024, 2:05 pm
It sounds like ASD (not high functioning, medium functioning) combined with neurological delay possibly due to the epilepsy. Even if this diagnosis is not strictly accurate, it's accurate enough to be true and to get you access to the services she needs.
You need a developmental psychologist or a neuro-psychologist.
I would not accept any vague "not really ASD but sort of" type of answer.
You need a diagnosis to get services. Switch doctors if you need to, but first try calling and bursting into tears on the phone about how you need help desperately.
Then you need a special needs school. Even if she is bright, she needs intensive intervention on the behavioral and skills front which she won't get in a normal kindergarten.
If you put her in the right place now, she'll likely get over most of the difficulties.
In the meantime, is there any local chesed organisation who can send you a helper for a couple of hours a day so you can get some space?
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giftedmom
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Sun, Sep 29 2024, 2:05 pm
| amother OP wrote: | Itâs very hard to know because it seems more like behavioral regression vs asd regression. But I could be wrong of course, what do I know.
Iâm terrified of Pandas. People are saying that even if bloodwork comes back fine it could still be pandas. So how do we know for certain? |
Pandas would be a much better diagnosis for her than the other options. It would mean itâs treatable and she can still have a normal life.
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amother
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Sun, Sep 29 2024, 2:10 pm
| amother OP wrote: |
I donât know what on earth else Iâm supposed to do!! Iâm not excited to just get a diagnosis slapped on, I really want in-depth very informative evals done. |
See the thing is that there are two separate things.
Getting an accurate diagnosis.
Getting her services.
For some strange reason, these don't always go hand in hand so sometimes it's worth taking a less accurate diagnosis but one which gives access to services and then once she is getting the help, the therapists working with her will be able to fine-tune the diagnosis and make it more accurate.
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