Re: [Families_with_oligodontia] Digest for families-with-oligodontia@googlegroups.com - 2 updates in 2 topics

[more4...@verizon.net]

I am not sure. Google her name an see if she is still conducting research to identify the genes. When we worked with her she was conducting research for Chapel Hill in North Carolina. This mutation was found in all three of our children . It has been twenty years of insurance fighting for surgeries and procedures that were covered legally in the state of New York. You have to understand your insurance regulations, medical billing, and fight with perseverance and grit.

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On Jul 11, 2017, at 5:12 AM, families-wit...@googlegroups.com wrote:

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• Digest for families-wit...@googlegroups.com - 1 update in 1 topic - 1 Update
• Anyone get genetic testing on their child? - 1 Update

Digest for families-wit...@googlegroups.com - 1 update in 1 topic

Anne <anneph...@gmail.com>: Jul 10 09:05PM -0700 How can I have Dr. Sylvia Frazier-Bowers help me diagnose my son? We live in California.   On Sunday, July 9, 2017 at 10:28:05 AM UTC-7, Susan S wrote:

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Anyone get genetic testing on their child?

Anne <anneph...@gmail.com>: Jul 10 08:36PM -0700 Hi!   I had some genetic testing done on my son in January 2016 which included a full physical exam. My son is globally delayed due to a heart condition which was not repaired until he was 18months old. I emailed the Geneticist when I was told about my son's missing permanent teeth in October of 2016 and never heard back from him. Then, I met with the (annual physical)Pediatrician in late June 2017 to share my concerns(again) about the missing teeth and questioned why the Geneticist never returned my email. A non reply meant no additional genetic testing was available? According to the Pediatrician and Geneticist, most diagnosis can be made by a through physical exam. Pediatrician promised that he'd contact the Geneticist on my behalf regarding my question if there were any more available tests.   I got a reply from the Geneticist. This was his response from an email he sent me:   "No additional genetic testing suggested based on this finding This is more common than you would think; I can find no genetic association with autism or congenital heart disease. Ethan has had a normal oligonucleotide microarray(CGH), Fragile X syndrome, and DNA methylation for Prader wWlli/Angelman syndrome(PWAS). This is the state of the art genetic testing for those in the autistic spectrum. Will see Ethan in January 2018 for a followup."   The Geneticist goes on tho suggest that we can apply to part of a study at UCSD if we wanted to find a specific autistic link. We never thought our son was Autistic, but we went through all the available testing offered to rule it out. In a nutshell, I don't think my medical insurance covers any additional genetic testing. I saw the bill just for the CGH test...it was like $800 bucks and the results took 4-6 weeks. At this point, I'm not going to pay out of pocket for genetic testing.   Please share the type of genetic testing you you end up doing for your daughter. It's info I'll keep in handy if I decide to go down that rode again.

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