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Discussion Starter · #1 ·
Sorta related to my thread about dental stuff...when the dentist told me last week that he needed a medical release to treat Connor because the ADA changed their policies on abx prophylaxis and now include immunocompromised, the dentist asked me who Connor's rheumatologist was. I said "he doesn't have one..." and the dentist said "with his syndrome, he should definitely be seeing a rheumatologist."

Umm...what exactly IS a rheumatologist? Connor sees specialists concerning his specific symptoms (pulmonology, otolaryngology, gastro, etc) but not rheumatology.

He said "who then is managing his immune deficiency?" Well, he has an infectious disease dr that his other specialists consult when needed, his geneticist or developmental ped are the ones who order the yearly labs to watch his levels, but that's it.

Should he be seeing a rheumatologist?
 

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A lot of people go to rheumatologists for autoimmune diseases. Which is totally different than immune compromise. We see an immunologist and that's it. We have no reason to see a rheumatologist. I think maybe the dentist just isn't familiar with who sees just plain immune defficency.
 

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Discussion Starter · #3 ·
He did say something about autoimmune, and I told him that Connor is at a hugely increased risk of DEVELOPING autoimmune diseases, but he doesn't have any NOW. So then he asked about who manages his immune deficiency and I told him infectious disease, and that seemed to satisfy him.

But it got me wondering...
 

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I think that as long as your pead and the immunologist are aware of the increased risk of auto immune then that should be fine unless he starts to show the signs of an auto immune disorder. The VCFS/del22 team at HSC in Toronto that I was talking too said that Megan should be routinely seen by the pead and that they should keep an eye out for autoimmune issues The main ones they mentioned that are more common in VCFS are, Juvinile arthritis, lupus, celiacs and chrones but there are others that have been seen at increased rates.
 
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