We received good news the other day. The test results for the secondary genetic test to determine if Maddy had Pitt-Hopkins Syndrome came back. Maddy does not have this disorder. That was a bit of a relief, since this particular diagnosis can come with further health complications.
We were actually all on our way to the Mayo Clinic for another appointment when the call came. Maddy also had an appointment with an allergist. Long story short, the things we are worried about her being allergic to (dairy and gluten) are hard to test for. They basically told us that for a gluten concern we need to see a GI doctor. For the lactose intolerance issue, Maddy would need to blow into a breath device to test for it. That's not likely to happen. Therefore, we are continuing to do what we have been doing regarding Maddy's diet.
Life being what it is, I've been really behind in posting anything here, but am hoping to get back to regular posting soon.
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