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confused and tired

Posted by on Jan. 6, 2015 at 9:50 PM
  • 10 Replies
so I took my son to Children's Mercy for a GI appointment and the doctor was asking questions about his eating habits. We were referred to them by childrens mercy when we were trying to get him tested for autism but they didn't seem to think that he was based on his pointing to things.after answering his questions he seemed to think that a lot of his problems were in the spectrum and wasn't sure why he didn't get his diagnosis. So I'm taking him to see about a different facility to get tested when he turns 3. Very tired its a three hr drive there and three hr back. Got some blood work done. And needs to get xrays done and sent back. Feels like the Dr visits never end. Funny how everyone else sees this in my son but one person who should have. His therapist thought maybe they just didn't want to fund him.
by on Jan. 6, 2015 at 9:50 PM
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Replies (1-10):
Momof4AEMW
by Platinum Member on Jan. 6, 2015 at 10:02 PM

Some just don't want to 'label' so young and watch for them to grow into or grow out of.  It's frustrating, and I don't agree.  That prolongs starting services. We went through it too.  Just keep at it.  If he does have it, you'll find the right one.  Hugs.

tiffacollins
by Member on Jan. 6, 2015 at 10:18 PM
Thank you. Think the lady saw him and, seen him over engaged. he is backwords a bit, the no pointing and interaction is most maby, but Manson has to have complete attion on him at all times so that make there stero type off. Also said he had no repetive behavior but list it over an over on the report. He would not stop tapping her on the leg when she would stop looking at him is repitive.she was just like looks he is social. -.- All day long he does the same thing everyday the same way but they disregard all that. Never heard the out growing philosophy. I think early intervention is absolutely the best.
mypbandj
by Jen on Jan. 6, 2015 at 11:29 PM
I'm glad I didn't waste my time with Childrens Mercy then. (Kansas City, right?)
It drives me crazy that kids clearly on on the spectrum are not Dx because the doctor doesn't think the symptoms are severe enough.
My oldest is HF. I took him to KU and the same thing happened. We had to go to a neuropsychologist to get the Dx. Sure, he's verbal and able to attend school but he's still a effing mess! Just because he isn't rocKing in the corner doesn't mean he doesn't deserve help.
Where are you going that is 3 hrs away??
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lady_katie
by on Jan. 7, 2015 at 10:24 AM
We went through that too. I waited 8 months for my son to have a complete developmental evaluation at 17 months old, but they wouldn't label him that young. They diagnosed him with a "mixed developmental delay" and noted "characteristics of autism". We had to travel 2 hours to get the actual diagnosis, and a year after that he was diagnosed with developmental coordination disorder and dysgraphia as well. We're expecting ADHD to be added next year and we're starting to address the GI issues now too. It is such a headache, but fighting to get these diagnosis as early as possible has helped. I just wish they could have done it all the first time around, it's so exhausting!
tiffacollins
by Member on Jan. 7, 2015 at 4:31 PM
Quoting mypbandj: I'm glad I didn't waste my time with Childrens Mercy then. (Kansas City, right?)
It drives me crazy that kids clearly on on the spectrum are not Dx because the doctor doesn't think the symptoms are severe enough.
My oldest is HF. I took him to KU and the same thing happened. We had to go to a neuropsychologist to get the Dx. Sure, he's verbal and able to attend school but he's still a effing mess! Just because he isn't rocKing in the corner doesn't mean he doesn't deserve help.
Where are you going that is 3 hrs away??


I live in pittsburg is and kc is three hrs from us to children's mercy. I was thinking Ku would help us more where was ur neurophysiology clinic at. He can't pay attion for a half second women thought that ment he was engaged with them. Haha man if I could put in to words what I saw that day.
tiffacollins
by Member on Jan. 7, 2015 at 4:40 PM
Quoting lady_katie: We went through that too. I waited 8 months for my son to have a complete developmental evaluation at 17 months old, but they wouldn't label him that young. They diagnosed him with a "mixed developmental delay" and noted "characteristics of autism". We had to travel 2 hours to get the actual diagnosis, and a year after that he was diagnosed with developmental coordination disorder and dysgraphia as well. We're expecting ADHD to be added next year and we're starting to address the GI issues now too. It is such a headache, but fighting to get these diagnosis as early as possible has helped. I just wish they could have done it all the first time around, it's so exhausting!


Manson was DX with global development delay and apraxia with possible GI issues, because he only eats fruit and tomatoes. Yougart when he don't have fruit. But that lady yelled at me it absolutely is not autism. Hmmm seems like the shoes fits to me he can't talk. She put down to start pic therapy but no one where I live do it. And no funding means I would have to pay a crap ton for gas and the therapy. Our house hold get 700.00 a month for 4 people I can't afford that. So I know I can't do what its best for him. It just don't seem right. Yes it is very exhausting.
mypbandj
by Jen on Jan. 7, 2015 at 5:27 PM
I first went to the KU autism clinic. They are the ones that said it wasn't autism, even though he had so many symptoms.

They called me back a few months later as a follow up. That's when I told them how upset I was. They had not helped me in any way. I left with more questions. So they referred me to a neuropsychologist at KU. I don't remember his name though.

I have recently heard the name Dr Kathryn Ellerbeck, a developmental pediatrician from KU, will Dx kids on the spectrum. Maybe look her up too?


Quoting tiffacollins:
Quoting mypbandj: I'm glad I didn't waste my time with Childrens Mercy then. (Kansas City, right?)
It drives me crazy that kids clearly on on the spectrum are not Dx because the doctor doesn't think the symptoms are severe enough.
My oldest is HF. I took him to KU and the same thing happened. We had to go to a neuropsychologist to get the Dx. Sure, he's verbal and able to attend school but he's still a effing mess! Just because he isn't rocKing in the corner doesn't mean he doesn't deserve help.
Where are you going that is 3 hrs away??


I live in pittsburg is and kc is three hrs from us to children's mercy. I was thinking Ku would help us more where was ur neurophysiology clinic at. He can't pay attion for a half second women thought that ment he was engaged with them. Haha man if I could put in to words what I saw that day.
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tiffacollins
by Member on Jan. 7, 2015 at 7:06 PM

They did not offer me a follow up think I will write a letter the boss or something like u said left with more questions and nothing. I'll look her up! Thanks so much for ur information.

Quoting mypbandj: I first went to the KU autism clinic. They are the ones that said it wasn't autism, even though he had so many symptoms.

They called me back a few months later as a follow up. That's when I told them how upset I was. They had not helped me in any way. I left with more questions. So they referred me to a neuropsychologist at KU. I don't remember his name though.

I have recently heard the name Dr Kathryn Ellerbeck, a developmental pediatrician from KU, will Dx kids on the spectrum. Maybe look her up too?


Quoting tiffacollins:
Quoting mypbandj: I'm glad I didn't waste my time with Childrens Mercy then. (Kansas City, right?)
It drives me crazy that kids clearly on on the spectrum are not Dx because the doctor doesn't think the symptoms are severe enough.
My oldest is HF. I took him to KU and the same thing happened. We had to go to a neuropsychologist to get the Dx. Sure, he's verbal and able to attend school but he's still a effing mess! Just because he isn't rocKing in the corner doesn't mean he doesn't deserve help.
Where are you going that is 3 hrs away??


I live in pittsburg is and kc is three hrs from us to children's mercy. I was thinking Ku would help us more where was ur neurophysiology clinic at. He can't pay attion for a half second women thought that ment he was engaged with them. Haha man if I could put in to words what I saw that day.
mypbandj
by Jen on Jan. 7, 2015 at 10:39 PM
The follow up was just a phone call. I didn't know or expect it. They just called one day to ask me how things were and if my appointment with them had been helpful. I told them it wasn't. That's when they referred me.

Quoting tiffacollins:
They did not offer me a follow up think I will write a letter the boss or something like u said left with more questions and nothing. I'll look her up! Thanks so much for ur information.

Quoting mypbandj: I first went to the KU autism clinic. They are the ones that said it wasn't autism, even though he had so many symptoms.

They called me back a few months later as a follow up. That's when I told them how upset I was. They had not helped me in any way. I left with more questions. So they referred me to a neuropsychologist at KU. I don't remember his name though.

I have recently heard the name Dr Kathryn Ellerbeck, a developmental pediatrician from KU, will Dx kids on the spectrum. Maybe look her up too?


Quoting tiffacollins:
Quoting mypbandj: I'm glad I didn't waste my time with Childrens Mercy then. (Kansas City, right?)
It drives me crazy that kids clearly on on the spectrum are not Dx because the doctor doesn't think the symptoms are severe enough.
My oldest is HF. I took him to KU and the same thing happened. We had to go to a neuropsychologist to get the Dx. Sure, he's verbal and able to attend school but he's still a effing mess! Just because he isn't rocKing in the corner doesn't mean he doesn't deserve help.
Where are you going that is 3 hrs away??


I live in pittsburg is and kc is three hrs from us to children's mercy. I was thinking Ku would help us more where was ur neurophysiology clinic at. He can't pay attion for a half second women thought that ment he was engaged with them. Haha man if I could put in to words what I saw that day.
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darbyakeep45
by Darby on Jan. 8, 2015 at 1:42 AM

Hugs mama...these ladies have some good thoughts:)

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