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Raising Special Needs Kids Raising Special Needs Kids

Not sure what to ask for now :(

Posted by on Jun. 25, 2013 at 12:09 AM
  • 18 Replies
I am going to schedule Maggie's 5 year check up and have a few things to talk to her dr about. The highest priority is the pains she gets. It used to be just her legs that would hurt. And I mean bad enough that she would refuse to walk. We did X-rays and went to an ortho. Everybody says its growing pains but I'm not buying it. In the last 2-3 months its not just been her legs, but her arms, shoulders, and neck. I'm afraid she has ja but the ortho disagreed. It's not constant and hasn't been a huge problem since summer started, and therapy ended.
But if the ortho won't listen to me, the one at Children's won't even see her because the X-ray doesn't show anything, what other options are there? And if its not bone or joint issues what else could it be?

Not related, but wanted to share that both Maggie and Jeremiah will get their ados testing Wednesday :)
by on Jun. 25, 2013 at 12:09 AM
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Replies (1-10):
Mipsy
by Chelle on Jun. 25, 2013 at 3:59 AM
1 mom liked this
Ty has this problem too, its neuropathy pain for him they believe. Bring that up! *hugs*
arkansasmama08
by Gold Member on Jun. 25, 2013 at 4:10 AM
Can you give me any more information? They keep acting like I'm blowing it up, and that it's normal. I get that she's in the typical age range for growing pains. But her neck, arms and shoulders? And this has been going on for a long time, maybe since infancy. She didnt walk until 16 months and refused to even stand or bear weight on her legs until just a few months before. I'm wondering now if it hurt then too.


Quoting Mipsy:

Ty has this problem too, its neuropathy pain for him they believe. Bring that up! *hugs*

SAMI_JO
by on Jun. 25, 2013 at 4:16 AM

 If you don't have to have a referral take her to another doctor. She needs an MRI. Don't give up,if you do need a referral, look into your ins they should have a "nurseline" call it and see if they can refer  you to a PPO Pediatric Orthopedic.

arkansasmama08
by Gold Member on Jun. 25, 2013 at 4:23 AM
I'd have to get a referral for any specialist. We switched drs last year, and this one is really good with the kids. He seems genuinely concerned but is as much at a loss as we are when it comes to certain things, including this. They tried several times to get her into the ortho at Children's. he refused to see her after looking at her X-rays. There is nothing that shows abnormal on the X-rays. I could ask for an MRI and see if he would do that.


Quoting SAMI_JO:

 If you don't have to have a referral take her to another doctor. She needs an MRI. Don't give up,if you do need a referral, look into your ins they should have a "nurseline" call it and see if they can refer  you to a PPO Pediatric Orthopedic.


arkansasmama08
by Gold Member on Jun. 25, 2013 at 4:25 AM
Oh, and the ortho we did manage to get into was useless. He wasnt a pediatric ortho and it was obvious he dealt mostly with injuries and obvious situations. Maggie has a 40% gross motor delay and he said he didn't see any evidence in it because she could walk down a hallway and back. And we had to drive an hour one way to see this clown.


Quoting arkansasmama08:

I'd have to get a referral for any specialist. We switched drs last year, and this one is really good with the kids. He seems genuinely concerned but is as much at a loss as we are when it comes to certain things, including this. They tried several times to get her into the ortho at Children's. he refused to see her after looking at her X-rays. There is nothing that shows abnormal on the X-rays. I could ask for an MRI and see if he would do that.




Quoting SAMI_JO:

 If you don't have to have a referral take her to another doctor. She needs an MRI. Don't give up,if you do need a referral, look into your ins they should have a "nurseline" call it and see if they can refer  you to a PPO Pediatric Orthopedic.



SAMI_JO
by on Jun. 25, 2013 at 4:26 AM

 If your pediatrician "believes" you, he could order the mri to be done at Childrens hosp. Where do you live?

arkansasmama08
by Gold Member on Jun. 25, 2013 at 4:45 AM
Arkansas. 2.5 hours from Children's hospital. I'm sure our local hospital could do it, just hasn't thought to ask for one.
Even her pt doesn't think it's anything to worry about. She's got so much else going on and seems like everybody thinks I'm crazy but everytime I push for testing to be done, it always supports my concerns. I was worried about her gait and had her evaluated by the pt. 40% gross motor delay. I was concerned about her speech and finally pushed enough that they broke down and did an articles speech evaluation, even tho the st didnt think she needed it. Guess what, she has a severe articulation delay. She's five now and scored below a 3 year old. Just because I'm a younger parent with no medical education these people think I'm an idiot. I'm with my kids 24/7. I worked daycare and preschool before I had them. I know what typical development looks like and when there are things off with my kids. Sory for the rant. I'm just getting frustrated with having to fight for everything
SamMom912
by Silver Member on Jun. 25, 2013 at 8:31 AM

Have you had her feet looked at? My son recently visited a pediatric podiatrist. His flat feet and he has tibial tortion (he foot and right leg turn inward when he walks- almost invisible to untrained eye) this makes all his leg muscles and body work (core) harder just to walk since he using these muscles incorrectly. 

He is right on the cusp of surgery... But the doctor has suggested we try orthotics in his shoes. sam is little... Size of 5 year old at almost 7. Since he has so much growing left to do, the dr thinks perhaps the orthotics can help.. BUT... If this has not corrected by orthotics by 9, surgery will happen. 

Now i realize this would not account for the arms or neck.. But maybe they are unrelated? Maybe the arms and neck is ot related and the legs and body are exacerbated by the feet. 

Bluecalm
by Silver Member on Jun. 25, 2013 at 9:29 AM
Have you ruled out attention seeking or avoidance behavior? I'm just asking because after 30 years of teaching, I've worked with some very convincing children who were fine.
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arkansasmama08
by Gold Member on Jun. 25, 2013 at 9:42 AM
Wouldn't she only do it then when she was in trouble or wanted to get out of something? She'll stop mid play and come to me crying. When her arms started it was at pt and she was in tears it hurt so bad and then had a meltdown because she wanted to finish the exercise but couldn't.


Quoting Bluecalm:

Have you ruled out attention seeking or avoidance behavior? I'm just asking because after 30 years of teaching, I've worked with some very convincing children who were fine.

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