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I have Concerns about my 9 month old son, Macrocephaly.

My son is 9 months old and his head circumference is 50cm ( 100th percentile )amongst other symptoms.

At birth he was diagnosed with Mild HIE
Mild hypotonia
Mild myelination delay( MRI confirmed)
Acid reflux/sleep apnea

We had previously seen genetics and had his PTen gene tested which turned out normal. After a follow up with an OT eval and neuro last week I was told that he may have a syndrome but did not specify which. We had a genetics follow up scheduled late April with the nurse practitioner, the moved up to mid March with the genetics nurse practitioner, then today they called to move it up to nest Tuesday and to see a genetics Doctor instead of nurse practitioner.

Should I be concerned? I am worried now they moved his appointment up twice in less than a week. What questions should II be asking, any thoughts or concerns I should have?
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