So fed up 😡 | Imamother

amother

↑ Lightcoral ↓

Sun, Sep 29 2024, 2:19 pm

amother OP wrote:

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.

This isn't high functioning and it shouldn't be difficult to diagnose.
It's only difficult to diagnose in girls when they are high functioning enough to reach a slightly older age and learn how to mask so it's hard to see when they're masking or whether they really understand the social piece.

ASD does not equal ABA.
There are plenty other types of therapy which you can use first. I have 2 children with HFASD and have not used ABA with either of them. But you need the diagnosis as a key to therapy.

A neurologist is the wrong address here. Find a neuro-psychologist or a developmental psychologist.

You're a great mom!!!!!
Please give yourself the kudos that you've done everything right even if the people around you are being stupid.

amother

↑ OP ↓

Sun, Sep 29 2024, 2:38 pm

amother Lightcoral wrote:

Thank you so much, ♥️ your response brought me to tears.
Do you have clear recommendations for me where to go?
Also, why is it that the school claims not to see what I’m clearly seeing?
Can you share more about your journey with your kids because I’m just so lost.

amother

Cerise

Sun, Sep 29 2024, 2:44 pm

amother Lightcoral wrote:

I don't want to derail this thread, but maybe for the sake of OP (and others), can you explain why you didn't do ABA?
I happen to be a special education teacher (not currently working) who for the life of my can't figure out why ABA has become so popular (I'm assuming the answer is related to $$$)

amother

↑ Sienna ↓

Sun, Sep 29 2024, 2:49 pm

amother OP wrote:

I can’t just do Motrin or antibiotic trials, she’s taking seizure medication daily. I need someone to guide me. Check blood levels first, etc. I don’t even know what needs to be done!

Dr. Elena Frid is a neurologist in Manhattan who specializes in seizures and also pandas/pans/lyme and AE. She's highly qualified and probably who I'd see if I was in your shoes

https://www.ledamedical.com/about

amother

↑ Lightcoral ↓

Sun, Sep 29 2024, 3:59 pm

amother OP wrote:

I can't recommend specific doctors at this point but you do need a neuro-psychologist not a neurologist.

Sometimes in a school setting these kids know how to copy other kids and adapt themselves so their behavior is less obvious.

I went through a long and very very hard journey starting where you did. My kids sound higher functioning - they were toilet trained at 2 and didn't have any speech delays.

It took me until the older one was 11 to accept that in order to get the right services, we needed the ASD label. I fought like you for an "accurate" label.
I wish I would have been around then to tell me what I'm telling you.
Take the label. Take it and use it to get your kid help. Worry about everything else later. As soon as we had that in place, we got speech, communication, occupational, play therapy all with a communication focus. My kids ran ahead from there. They are both mainstreamed and doing well with the right support.

About ABA - my personal feeling, and this is just my opinion, is that ABA is not for clever kids. Kids who are bright can learn the behaviors intellectually. They don't need to be trained into them. If I explain to my son that when he stands too close, he makes people uncomfortable and give him 3 examples, he gets that and he stops doing it. It's way more effective than ABA for a kid who is intellectually able to understand the concepts.

This is also where you have to differentiate between IQ and ASD functioning. You can have a kid with an IQ of genius level who is low functioning and a kid with significant delay who on the ASD side is high functioning. The two don't correlate.

It sounds like your daughter is a very bright child with a medium level of ASD. So the focus in therapy would be using her strong side (intellectual) to compensate for her weaker side (social-emotional). Do you see what I mean?

amother

NeonPurple

Sun, Sep 29 2024, 4:14 pm

As a mother of multi0le children with adhd and a child who had PANDAS (was diagnosed as adhd, asd, odd, ocd, taurettes & unspecified mood disorder before we treated for pans)
It sounds to me so much like pandas/pans/lyme/ae!!!

I'd def get evaluated by the school district.
Ask her neuro if you can combine her epilepsy meds with motrin (Usually can. At least I know my family with epilepsy and taking meds totally did and can) and do a 3-4 motrin day trial.
There are so many gentle and natural ways to treat pandas.

My kid now is doing 85% better. But still has some residual issues.
I'm planning to take her to Mrs. Metzbach at Brainstorm to get her I to shipshape bh.
I took my 5 year old son to her due for adhd and I see a huge improvement.

My nephew who also has epilepsy and before his meds were worked out developed some brain damage as a baby, has grown by leaps and bounds since starting her program. He's unrecognizable.

In the grand scheme of things it's not that expensive. And if you are in brooklyn/monsey/monroe, there might even be trained providers in your child's school to work with her 2-3× a week.

I pay 65 a session 3x a week for my son. Its worth every single penny.

amother

Vermilion ↓

Sun, Sep 29 2024, 5:59 pm

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

amother

↑ OP ↓

Sun, Sep 29 2024, 6:27 pm

amother Purple wrote:

Is it a side effect of the seizure medication? I have a friend with a 7 YO who also has seizures and sounds so similar to your DD. He is also violent. She said it started from the seizure medications. And because he isnt stable enough (im not sure in which regard), she cant even evaluate him for asd.

It would make sense if her symptoms began the same time she started her medication. However she’s only been on the medication for two months and her concerns started a while back.

amother

↑ OP ↓

Sun, Sep 29 2024, 6:47 pm

amother Lightcoral wrote:

I hear what you’re saying, but my heart doesn’t want to accept it. I’m so afraid of the ASD diagnosis for some reason, I was more relieved to get the epilepsy and developmental delays answer. I’m so afraid of tacking on ASD.

So far we’re doing OT twice a week through insurance with a terrific therapist but she needs way more.

Where did you get the therapies mentioned? Not asking for a specific name, but through an agency/private pay? How did you find those therapists?

I don’t know where to start.

amother

↑ OP ↓

Sun, Sep 29 2024, 6:48 pm

Her neurologist recommended a shadow for during school, but I’m not sure it’s the right thing for her at the moment. I don’t know if she feels different than the other kids and if she already does then I don’t want to add to it.

I was asked why I don’t put her into a smaller school setting, my answer is how do I know that’s a better idea for her. If she’s still in pull-ups at school, the kids start catching up at some point. With a smaller setting, isn’t there more of a chance for kids to notice more.

I would send her to a small special Ed preschool if there’s need for it, which I keep doubting. But anyway without the ASD diagnosis they’re not taking her.

amother

↑ OP ↓

Sun, Sep 29 2024, 6:56 pm

I’m asking please for those mentioning Pandas again and again. Please stop. I can’t think about that yet and you do realize how irresponsible is it to tell someone to just give Motrin round the clock for a few days, and to give antibiotics. It sounds insane.
I don’t need another headache now to add to our growing list of issues. Maybe one day I’ll be ready to look into pandas but now I just can’t.

If it was straightforward and all it took was “simple” bloodwork I might hear it. But according to what I’m hearing you can’t even rely on that.

And I’m sorry but a Dr who treats such different vast array of issues seems a bit weird to me. It’s highly suspicious to me to see a Dr who says they treat things from seizures to chronic fatigue to Lyme to pandas. Make it make sense.