The Children’s Hospital of Philadelphia (CHOP) has a clinic that specializes in eosiniphillic disorders. These disorders are encompassed in the acronym EGID. We still need to ruled out an EGID for BabyM and BabyR, but either way the doctors at CHOP will be able to help. It will be amazing to be able to speak to a doctor that knows about FPIES. I can’t imagine I will have to advocate at the same level with doctors who know what they are talking about. I am sure I will still have to be informed and involved, but I am hopeful that this experience with the medical community will be totally different than the entire year and a half of BabyM and BabyR’s lives.
The intake process with CHOP is complete, but because the twins have been seen by a GI doctor in the past the appointment is classified as a "second opinion." That being the case, the medical team has to review their past medical records to even be able to give us an appointment. Until the records are reviewed they can’t even give me an estimate of how long it will take. Meanwhile BabyM has her scopes scheduled for September 10th (Good old Dr. D. has still not called me back about BabyR's scopes AND he went on vacation!) I am just praying that we can get into CHOP before BabyM's scopes so that the real specialists can take care of it. I know they won’t be able to scope her by then, but I am somewhat nervous that Dr. D. could miss something since he doesn’t seem to know too much about FPIES.
So, I am still waiting…not so patiently.
Oh yeah- too much of this is subjective...I would hope for a scope at CHOP as well. The GI doctors there know what they are seeing; and they test for more than the "usual" while they are in there. We didn't see GI at CHOP but this is what I've learned. We are fortunate that Mayo does have an EE clinic in their GI practice so they were at least familiar with that (and ruling that out).
ReplyDeleteI hope you get in SOON!!!! If you haven't heard back from them in a few days- call them and follow up.
Good luck!!
Joy
Thanks Joy - and thanks for leading me down the CHOP road in the first place!
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