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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

mitochondria

Posted by on Sep. 21, 2013 at 6:05 AM
  • 20 Replies
My cousins son is 17 months and still can't sit up. He has had genetic testing for mitochondria and it was neg. He is seeing a neuro Dr. at rhiley in Indy and they can't find anything.she is trying to get him in to see a DAN!Dr. But INS denied her. do any of you deal with this and if so what type of testing/treatment did you get and what has helped
by on Sep. 21, 2013 at 6:05 AM
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Replies (1-10):
valkyriemommy
by on Sep. 21, 2013 at 2:27 PM

Well the first thing I would say is continue down the Neurologist path. Get a second or third opinion if needed. there are so many other tests. My daughter has autism but before that she was diagnosed with epilepsy at 4 months. we had to go through so many things, hospitalization, mri's under sedation etc.

My second thought would be has her child actually been disagnosed with Autism. A DAN Dr. is a Defeat Autism Now dr. and if you read some articles you can find out that it takes very little for any dr to become a DAN dr. just a seminar. and they feel that is a diet/supplemental issue and take a completely different approach. I assume that since it is autism related the insurance wont cover it. Most if not all insurance companies deny autism care. I for one have never had any therapy covered by insurance. all of the neurological epilaepsy stuff gets covered but none of the autism things.

so my suggestion would be to continue with neurologists at this point. diagnosis is a key element. has he had an eeg, any MRI's or CT scans. go as far as possible so that treatment and testing can be covered.


bethkeagan
by on Sep. 21, 2013 at 3:02 PM
1 mom liked this
Yes he has had all of those tests done probably 2x! He has been to two different neurologist we are in Indiana and lucky to have INS that covers DAN! The DAN she is wanting to go see is in Indy I also see this Dr. for my son. His own son is autistic and I feel very comfortable with him and his approach ;-) thank you for your advice :-)
Momof4AEMW
by Gold Member on Sep. 21, 2013 at 3:04 PM
1 mom liked this

Have they checked chromosomal abnormalities?  There are so many chromosomal disorders.  My daughter was/is excessively developmentally delayed, but she has downs and we've always known that is why.  I'm not saying this child has downs, you would already know that, but they could have something. 

darbyakeep45
by Darby on Sep. 21, 2013 at 4:35 PM
These ladies have some good advice. Hugs!!!
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mypbandj
by Jen on Sep. 21, 2013 at 5:31 PM
Wow that sounds frustrating. What is the insurance thinking? Not sitting by 17 months is a severe delay.
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Jodee24
by Member on Sep. 21, 2013 at 5:53 PM
1 mom liked this
Good luck!! We have never seen a DAN dr bc most never take insurance but my friend took her son and the supplements they have him helped in so many areas. But thousands of dollars of course. 😢😡
bethkeagan
by on Sep. 21, 2013 at 8:52 PM
I'm not sure about the chromosomal testing.I will ask her! Thank you! Yes the DAN! Dr. and approach we are taking (biomedical) does work wonders! I'm Lucky enough INS pays for the visits and blood work but nothing else. She has the same INS but she enrolled into a different plan :-( and now has to wait until June to change. She has already started the probiotic enzyme and other supplements she has also started him on the scd diet :-) it has helped him but she so desperately wants all the blood work and advice from the DAN! Thank you all and if there is anything else you can think of that might help please let me know :-)
Basherte
by Silver Member on Sep. 22, 2013 at 7:04 AM
I have no experience. Good luck momma! Here's a bump!
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heathers5500
by Bronze Member on Sep. 22, 2013 at 5:28 PM

Have they considered Musculoskeletal?

bethkeagan
by on Sep. 22, 2013 at 5:32 PM
I'm pretty sure they did the testing for that to. But I will find out for sure ;-) thank you
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