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Raising Special Needs Kids Raising Special Needs Kids

I feel like we're at a stand still.

Posted by on May. 8, 2013 at 7:49 PM
  • 7 Replies
Sadie is improving in some areas ( she is now doing a belly crawl thing and bearing weight on her legs more) but her drs don't really seem to be doing much. I know we're waiting on the geneticist appt but I feel like they should be doing more tests or something.

Does Sadie need to see a developmental pediatrician? Does she need to see someone about her weight? I just feel lost. No one knows anything not even any suggestions except seeing the geneticist.

I am seeing some improvement but not much. She's not nearly where she should be. She's still at about a 6-7 month mark. I just feel like they should be doing more tests. Nerve tests muscle tests or something! Should I call and request these things? Should I call her pedi and ask him what he thinks? I'm new at this and scared and I don't know where to start.
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by on May. 8, 2013 at 7:49 PM
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Replies (1-7):
mandee1503
by Amanda on May. 8, 2013 at 8:36 PM

I would be concerned that they don't seem to worried about her weight. If she isn't gaining, it can effect so much more! Good luck!

Elyssa414
by Elyssa on May. 8, 2013 at 8:58 PM
I would definitely set up an appt with the pedi to discuss your concerns.... Is she in EI and therapy?
jjamom
by Michele on May. 8, 2013 at 9:28 PM

Our Geneticist works more like a Developmental Pediatrician.  He is an expert on Down syndrome and knows all of the best resources.  He was excellent at recommending tests, specialists, etc that our son saw as well as helping to prioritize his needs, recommending therapies, writing scripts for orthotics, etc.  so maybe they are thinking the Geneticist will work in this capacity for your daughter as well.  

sadiebug1228
by on May. 8, 2013 at 10:18 PM
She does occupational therapy once a week.

Quoting Elyssa414:

I would definitely set up an appt with the pedi to discuss your concerns.... Is she in EI and therapy?
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sadiebug1228
by on May. 8, 2013 at 10:20 PM
Yeah the geneticist is in an office called genetics metabolism and Down syndrome or something like that. But they're 3 hours away I don't want to be having to go there once a month or more for tests lol.

Quoting jjamom:

Our Geneticist works more like a Developmental Pediatrician.  He is an expert on Down syndrome and knows all of the best resources.  He was excellent at recommending tests, specialists, etc that our son saw as well as helping to prioritize his needs, recommending therapies, writing scripts for orthotics, etc.  so maybe they are thinking the Geneticist will work in this capacity for your daughter as well.  

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jjamom
by Michele on May. 8, 2013 at 10:34 PM

We used to see him every six months, but he was always available to us by phone or email as well.  He should be able to order tests without you having to travel 3 hours for them every time.  But, I am sure all doctors and how they work are different, too.  

Quoting sadiebug1228:

Yeah the geneticist is in an office called genetics metabolism and Down syndrome or something like that. But they're 3 hours away I don't want to be having to go there once a month or more for tests lol.

Quoting jjamom:

Our Geneticist works more like a Developmental Pediatrician.  He is an expert on Down syndrome and knows all of the best resources.  He was excellent at recommending tests, specialists, etc that our son saw as well as helping to prioritize his needs, recommending therapies, writing scripts for orthotics, etc.  so maybe they are thinking the Geneticist will work in this capacity for your daughter as well.  



darbyakeep45
by Darby on May. 9, 2013 at 6:54 AM

Yes, I would definitely seek the advice of a developmental pediatrician.  Hugs and good luck!

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