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Re: Lack of Pediatric Psych Options Discussion

Posted by FloydAS on September 10, 2015, at 12:41:31

In reply to Re: Lack of Pediatric Psych Options Discussion FloydAS, posted by Phillipa on September 10, 2015, at 11:40:10

Thank you. She was originally diagnosed by a genetics specialist who was looking further into her immune deficiency issues (her specific immune deficiency is similar to common variable immunodeficiency but not exactly so they think her condition is possibly an unidentified primary immunodeficiency - currently there are over 275 identified rare primary immune deficiencies).

She is now being evaluated every other year by a pediatric cardiologist to keep tabs on potential vascular problems with the tissues and arteries around her heart. So far so good there.

In the mean time, her immunologist and a rheumatologist are treating her for constant flare ups of juvenile arthritis in her joints. She deals with the hypermobility and flexibility aspect of the EDS condition.

Her immunologist is a godsend. He treats her like she is his own child. He frequently calls us on weekends just to see how she is doing. She's such a unique case - he ensures he runs point on every aspect of her medical care and we're fortunate for that.




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