Which geneticist at CNMC to evaluate EDS hyper mobility?
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Anonymous
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My teen would prefer a woman but really anyone who is good with neurodiverse kids and someone who will take action and run tests, not just talk to her. Also, do kids automatically age out of Children's services after 18?
Thank you in advance! |
Anonymous
| yes at 18 they are an adult. You did not realize this?! |
Anonymous
| Do you have an actual diagnosis of EDS or just a suspicion? This is one of those diagnoses du jour that is often bogus. It's a real disease but many people who think they have it are often just psychologically fixated on their own perceived disability. |
Anonymous
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They don’t age out at 18 if they are an existing patient. My DD was seen until she graduated from college. But you can’t begin care there after age 17.
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Anonymous
This is incorrect for specialists. In fact, my best friend was diagnosed with EDS at a Children’s Hospital as an adult because it was the only local hospital that had an EDF specialist. Just a heads up that they’re opening up an EDS clinic at UVA, which will be state of the art. It’s very difficult to find providers that understand the diagnosis. |
Anonymous
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OP here,
Thanks, everyone. I didn’t realize there would be disagreement on whether a 17 year old would be seen as a first time patient there. I am aware of the “controversy” of the diagnosis. Anyone have a specific doctor there they like? And yes, I realize there’s a months long wait for popular specialists. |
Anonymous
My son had genetic testing at Fairfax Inova with Dr. Jordan, who is a pediatric cardiologist/ expert on connective tissue diseases. If you are concerned about EDS, your dc should have a cardiac exam, as well. Dr Jordan is male, but he is very kind. He spoke directly to my dc and with respect. He told me he has patients in their 60's, so 18 is fine. |
Anonymous
There is a connective tissue panel with 92 disorders. It is done through a cheek swab. You need a genetic cardiologist such as Dr. Jordan and his team to evaluate your dc. Just make sure you get pre authorization from your insurance. |
Anonymous
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OP, there's a ton of good resources on this FB group.
https://www.facebook.com/groups/DMVEDS |
Anonymous
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My DD goes to Children’s for hyper mobility spectrum disorder (HSD). There’s a team of specialists who treat it. They don’t care if you have the genetic marker for EDS, there are other ways to see if you have the symptoms that are suggestive of HSD.
Marc Disabella, neurologist who can address dysautonomia, or Jeff Rabin, who does physiology and can prescribe braces or PT for physical pain. They can also refer you to a GI and a geneticist there as well. |
Anonymous
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OP here,
Thank you to everyone who replied with names and resources! I appreciate it so much. |
Anonymous
| I have a client who is 35 with a genetic disorder and is just starting to see a geneticist at Children's bc her disorder is one that is more treated/studied in children. |
Anonymous
| Pediatric ophthalmologists also see adult patients with strabismus since that never goes away. |
Anonymous
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Why are you seeking a diagnosis for EDS for your DC? Are you seeking a referral for a cardiologist? Depending upon your insurance, you may not need one and if the cardiologist asks, then you can tell them there are concerns about a possible EDS diagnosis. Same for other specialists.
Geneticists diagnose but do not treat, they refer. |