Home
Log in / Sign Up
    Private Messages   Rules   New User Guide   FAQ   Advertise   Contact Us  
Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)
So fed up 😡
  1  2  3  4  5  6  7  Next



Post new topic   Reply to topic View latest: 24h 48h 72h

amother
OP  


 

Post Sun, Sep 29 2024, 12:55 pm
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!!
Back to top

amother
Firethorn  


 

Post 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
Back to top

amother
  OP  


 

Post 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 doesn’t allow us to see any urgent care while under their supervision.
Back to top

amother
  Firethorn  


 

Post Sun, Sep 29 2024, 1:28 pm
amother OP wrote:
They could do that?? But also our pediatrician doesn’t allow us to see any urgent care while under their supervision.


That's so interesting that they don't let 🤔 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...
Back to top

teachkids




 
 
    
 

Post Sun, Sep 29 2024, 1:29 pm
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
Back to top

amother
  Firethorn  


 

Post Sun, Sep 29 2024, 1:30 pm
Just call them before you go and make sure they do it. The ones near me (Boro park) do it...
Back to top

amother
Magenta  


 

Post Sun, Sep 29 2024, 1:30 pm
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. Don’t give up! She can benefit from ABA and other supports OPWDD can offer. Hang in there. I know how hard it is
Back to top

amother
  Magenta


 

Post Sun, Sep 29 2024, 1:31 pm
amother OP wrote:
They could do that?? But also our pediatrician doesn’t 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
Back to top

amother
Sunflower  


 

Post 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. Don’t 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?
Back to top

amother
  OP  


 

Post 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. Don’t 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… it’s just somehow impossible to diagnose with girls I was told. I really don’t want to consider ABA if I don’t 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 her…

Neurologist just doesn’t want to diagnose. I’m fighting for this child so so much it’s sad at this point that nothing is coming of my fighting.
Back to top

amother
  OP  


 

Post 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 wouldn’t give them even if they did do the well-visit. So it wouldn’t help us here I thinks.
Back to top

amother
  OP  


 

Post 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 isn’t being responsive when I tell him that the psychologist he recommended isn’t getting back to me.

I’m taking my kids for sick visits today and will demand an in-person visit with him because this isn’t working otherwise.

And did I mention I’m 7.5 months pregnant with kidney issues and making myself sick over this. It’s just not fair!!!!!!!
Back to top

giftedmom  




 
 
    
 

Post Sun, Sep 29 2024, 1:46 pm
My first thoughts are regressive autism (if you say her speech used to be above average) or some version of PANDAS.
Back to top

amother
  OP  


 

Post 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 didn’t start EI therapies she didn’t wave, follow my finger, point, it was like there was no one home. So they gave her a developmental delay diagnosis I guess because she’s still not toilet trained. It’s 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 doesn’t see significant delay then her two current diagnosis won’t be enough to get her eligible for special Ed preschool.

I don’t know what on earth else I’m supposed to do!! I’m not excited to just get a diagnosis slapped on, I really want in-depth very informative evals done.
Back to top

amother
  OP  


 

Post 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.


It’s 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.

I’m 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?
Back to top

amother
  Firethorn  


 

Post 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 wouldn’t give them even if they did do the well-visit. So it wouldn’t 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)
Back to top

amother
  Firethorn


 

Post Sun, Sep 29 2024, 1:58 pm
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.
Back to top

amother
Lightcoral  


 

Post 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?
Back to top

  giftedmom




 
 
    
 

Post Sun, Sep 29 2024, 2:05 pm
amother OP wrote:
It’s 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.

I’m 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 it’s treatable and she can still have a normal life.
Back to top

amother
  Lightcoral  


 

Post Sun, Sep 29 2024, 2:10 pm
amother OP wrote:


I don’t know what on earth else I’m supposed to do!! I’m 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.
Back to top
Page 1 of 7   1  2  3  4  5  6  7  Next Recent Topics




Post new topic   Reply to topic    Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

Related Topics Replies Last Post
I'm so fed up with this student
by amother
96 Yesterday at 4:11 pm View last post
Sourdough starter not fed for 3 months
by amother
5 Sat, Nov 09 2024, 3:44 pm View last post
7 MO was accidentally fed salmon with honey
by amother
28 Sun, Oct 20 2024, 10:15 pm View last post
The Fed cut rates
by amother
5 Wed, Sep 18 2024, 3:26 pm View last post
I am obese and fed up any tips?
by amother
31 Thu, May 23 2024, 5:03 pm View last post