Help! Therapy questions (m)

iVillage Member
Registered: 07-24-2003
Help! Therapy questions (m)
8
Wed, 07-19-2006 - 6:46pm

My (almost) 4 year old daughter, Kivrin, had her developmental evaluation with the Southwest Autism Network yesterday. She previously had a diagnosis of pdd-nos, but the team decided to overturn that in favor of a kind of non-defined catalog of delays and disability. Asperger's is still on the table, but won't be addressed until she gets a neuropsych eval at 6. Right now they want us to concentrate on SID and speech/language problems and see how OT and ST help her in the short term with social and emotional development.

So, I spent the day on the phone trying to get her into a therapy program and I'm a little frustrated. The private places have huge waiting lists and want Kivrin's PCP to give a "medical prescription" for therapy. The PCP wants to wait 6-8 weeks for the report on yesterday's evaluation to give that. The school district can't even answer questions until school starts. And! My insurance company has all kinds of restrictions on the what's, how's, and why's of therapies. For instance, if this is a purely developmental problem they won't pay a cent. Are ther tricks I don't know about? Is there some kind of advocacy group I should be contacting. Who needs to be yelled at and who needs fresh baked cookies? Is it easier to get a degree in occupational therapy than to get the services of an occupational therapist? I'm lost.

Oh...and....can I still post here? You guys have been so much help, but I guess my daughter isn't "on the spectrum" according to her new evaluation. She just has a lot of the signs and symptoms of someone "on the spectrum". I have a degree in Physics and this stuff makes me soooooo confused.

Mary

iVillage Member
Registered: 05-16-2006
Wed, 07-19-2006 - 7:08pm

I get so mad at insurance for this stuff. We live in PA and we got our son on Medical Assitance. It's a law in our state that if your child has a developmental delay they qualify. If I were you and I have been you, apply for medical assistance. Get copies of the evaluation (hound them on getting that in the mail asap). I had to apply for SSI ( I think was one step that was not needed) and it was a bunch of hurry up and wait. I hate private HMO they give you NOTHING!!!!!!!!!!!!!!!!
Hell I got denied speech cause my son (3yr) isn't mature enough I was told. I pay out of pocket 2x per month.
I feel your pain. Look into laws in your state.

Hang Tough
NOra

iVillage Member
Registered: 02-20-2001
Wed, 07-19-2006 - 8:02pm

I to live in PA and just got Bobby on Medical Assistance.

 


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iVillage Member
Registered: 03-26-2003
Wed, 07-19-2006 - 10:50pm

you sure can stay. YOu can call a duck a fish but if it looks like a duck, walks like a duck, etc.

Ya know when Cait was 3 I was told it was a myriad of things including dyspraxia, ADD, and receptive/expressive language disorder. At 4 was 4 she was diagnosed PDD-NOS. I was told then that perhaps once her language caught up her social skills would get better and she really wouldn't be PDD anymore that maybe it was just an auditory processing problem and lots of other little quirks and delays.

Thing was Cait was still the same kid regardless of which label they wanted to give her then. She is and always was ASD but it can be hard to pin down with little ones for sure. Cait's language did catch up but her social skills didn't. She was definitely a duck.

So you are definitely always welcome.

If you don't mind I will take the fresh baked cookies. I am beat today and can't really tackle the insurance thought currently but it appears that others did a fab job of that so you don't need my input. Insurance is not my forte anyway.

Renee

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iVillage Member
Registered: 06-25-2003
Thu, 07-20-2006 - 10:06am

Mary,


Of course you can stay and are always welcome here!

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-16-2006
Thu, 07-20-2006 - 8:36pm

I am shooting for AS for Adam next month too. I loathe the PDD label. So generic.
I hate my insurance (health America) we are SOOOOOOOOOOOOOO dropping them come November for hubby's open enrollment for health care. Funny that's what it is called when they scoot around not helping you when you need it the most!
Hell we pay everymonth and me and hubby don't see the doc that much but my poor child is the one at risk.
BTW
What part of PA ya'll live in? We are in PGH.

nora

iVillage Member
Registered: 02-20-2001
Thu, 07-20-2006 - 8:44pm
We are on the other side of the state in the philly burbs.

 


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iVillage Member
Registered: 05-16-2006
Thu, 07-20-2006 - 9:15pm

Wow. Adam's preschool is free through Project DART but our day camp for summer 2 days per week is 140 per month. HOWEVER they specialize in just dx'ed kids. The preschool thru dart is mixed.
It's worth every dime. Heck the speech I pay out of pocket is priceless.

nora

iVillage Member
Registered: 07-24-2003
Fri, 07-21-2006 - 11:11am

I know, it's pretty frustrating. However, the team we saw this week was really very good. In fact they are the best in the state. The team was made up of a pediatrician, a clinical child pyschologist, a speech pathologist and a family therapist (another phd psych). And, they spent 3 hours with her. I wasn't unhappy with the effort at all. The reason they overturned the pdd-nos is that although her dysfunction is equivalent to pdd-nos, there were 2 inconsistencies that they couldn't ignore. First, although she was lacking social skills she showed a great desire to be social with the doctors, and second, the gap between her receptive and expressive language skills was opposite of what they would expect in autistic spectrum disorder. Of course, I suspect she scored so high on expressive language because they just didn't recognize the source of the phrases she was was parroting. I don't know though because I wasn't there. This evaluation was largely arranged to make my husband as comfortable as possible with the findings and that meant I didn't want him second guessing everything they did to test her. So, we stayed in the family room with the family therapist.

And, I'm not that uncomfortable with the findings. I KNOW she has significant sensory problems. That has been the reality around here for a long time. And I know she has huge differences in different areas of her development. I was never all that comfortable with the pdd-nos diagnosis, except as an expedient to intervention. Kivrin didn't fit that well. I'm totally convinced she has Asperger's, but I didn't want to wait until she was 6 to get intervention, and none of the doctors we've seen will diagnose Asperger's until age 6. SID will get her the OT she needs and the documentation on her functional language deficiences will get her speech. I just have to find a way to get it paid for right now and that's the biggest problem. There's a chance I can get her endocrinologist to argue that her "learning disabilities" are tied to chronic low blood sugars in her first 5 months. That would make it "injury after birth" and would get me the medical definition I need. God! I hate HMOs.

I do plan to revisit the diagnosis with the two doctors that previously diagnosed her as having an autistic spectrum disorder. One of them actually founded the clinic we got the evaluation from Tuesday. I just have to wait for the report to come back.

Thanks for the help. I'm so lost at the moment. I have about 50 phone calls to make today and I promised Kivrin we could go swimming. bleh. I'm tired.

Mary