Guest guest Posted June 16, 2011 Report Share Posted June 16, 2011 Hi, My 5yr old daughter has BPP and Megalencephaly Capillary Malformation Syndrome. She is nonverbal, seizures since last year and intellectual disability. Sent on the Sprint® Now Network from my BlackBerry® Re: macrocephaly Mel, I forgot to add, my son also has PMG on his frontal/ parietal lobes bilaterally (in addition to his occipital lobe). Sent from my iPhone My son also has macrocephaly, no hydrocephalus and also has enlarged venticles. There has been no identified reason for the macrocephly with my son. There are many children with PMG with large heads. There possibly could be a reason your son's macrocephaly (which I can not give any reasons) or like my son, just having a large head like some other typical children. My son is 4 and his head circumference is above the growth curve (wears adult ball caps). I understand your concern and not knowing why can be frustrating. If there seems to be no clear reason, it could possibly be like my son- just simply having a large head. Sent from my iPhone My son has bilateral frotoparietal PMG and macrocephaly. The cause of his macrocephaly is unknown. The ventricles in his brain are slightly enlarged. It seems to be fairly uncommon in kids the PMG to have macrocephaly. I am wondering if there are any other kids out there with some form of PMG and macrocephaly caused by something other than hydrocephalus. Thanks for your input. Mel Rush Luke - 15 months, BFPP & Macrocephaly Quote Link to comment Share on other sites More sharing options...
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