Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Thanks Donna for the article on Heterotopia. I was told that Josh has Periventricular Nodular Heterotopia. I know very little about Heterotopia. Is Heterotopia a form of PMG....or this that different? Josh is 4 1/2 yrs old. He is my 3rd child out of 4. He didnt crawl till about 8 months and he didnt walk till 18 months. He is very speech delayed but doing much better. I can understand him but no one else can. He is starting to put words together and sing songs. He does not eat well...only wants Lucky Charms and Doritos. He has poor tongue control and some drooling. One of our biggest accomplishements is that he is peeing in the potty now :-) What a blessing! He has never had any seizures but I've been told it is very common. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 My son has Periventriclar Nodular Heterotopia along with moderate PMG also. He sounds familar to your son as far as developing. Have you had Dr. Dobyns read his MRIs yet? I was told by Dobyns that Trevor is one of only 20 children with a new syndrome called posterier PMG and BPNH. Wonder if Josh has this also? If you need his address let me know. He is at the U of Chicago. We just sent in blood samples for his reserach study. Trevor does have seizures......currently controlled FINALLY! Take care, Donna Quote Link to comment Share on other sites More sharing options...
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