We're heading to Boston to see Dr. Buie. I'm trying not to expect too much. We saw him a couple of years ago and have been following up with phone consults. He seems to be able to work wonders with other kids but refers to Becca as a "hard case." At least he tries. We know we're not getting any answers from anyone at CHOP. Their GI department is a joke. Wait five months for an appointment, get a prescription for Zantac. They completely botched an endoscopy and Dr. Buie had to do the whole procedure over again.
Becca's pediatrician says she's probably going to be one of those kids that always falls into the "we don't know" category. Comforting words from a pediatrician. At least she's honest. It's getting kind of frustrating. The neurologist says the MRI is "inconclusive." The endocrinologist says some hormones are elevated, but "we don't know what that means and there's nothing we can do about it." The metabolic specialist says something is "not right" but she can't put her finger on it. Not exactly helpful, but at least they weren't insinuating that I'm imagining all these issues. We've been down that road before.
So it's off to Dr. Buie today, and in May we see Dr. Rossignol. Wish I'd made that appointment years ago. Somebody out there has to have some answers. I have to believe that.
The Sunset of Adventures in Autism
2 years ago
How did the appt. with Dr. Buie go? We live just outside of Boston - wish I had known! Although my daughter is not currently a patient of Dr. Buie's we know him and he is not one to back down from a challenging case. Hope you get some answers!
ReplyDeleteHe's awesome! He wants us to try a medication that suppresses the immune response to food allergens (if I got that right). Becca is so relieved he didn't say she had to go back on the GFCF diet. He said we could probably eliminate fifteen different foods and still not find the culprit. He also prescribed another antibiotic and recommended another enzyme and probiotic. If none of this works we will have to go back and repeat the whole endoscopy/colonoscopy procedure. Ugh! I'd forgotten you're near Boston. Most of my family is in Rhode Island, and I'm up there at least a couple of times a year. It would be great to meet up sometime!
ReplyDeleteHang in there. This is such a long road that we parents endure. My neighbor sees Dr. Rossignol and is quite pleased. Her son is "a tough case" according to Rossignol, who has a son of his own that is a tough case. Every word, every milestone is amazing and it is happening. With our kids it's all about patientce. In the end, I believe, their time will come.
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