Help from parents with children that have heterotopia?

Question

My grandchild has hetertopia. I have read everything available on this disease. Some experts say one thing, some another. Almost all agree that she will have some type of seizure disorder when she gets older. She is going to be 5 this year,( acts more like a 2-3 yr old) barely knows any kids songs, her speech is not understandable by those that are not around her much. She does know her colors and her ABC's (orally) but does not know them by recognition. She is in a public school pre school, there are no special schools in this area. I have noticed that she has seemed to hit a peak and has not progressed in the past 6 months. Also have noticed that she can just be standing there and fall. Have urged her mom to get another eval and MRI but mom does not want to hear what the prognosis will be. Anyone out there that have children with this, and how far did they progress in school/speech and chronological age vs mental age?

Answer 1

after reading what you have written i thought how sad for all of you. i went on the web-and found a site that i though you may like to look at, other than that can the local educational office offer you some help that or social services,www.urmc.rochester.edu/smd/Rad/neurocases/Neurocase08.htm -

Answer 2

I don't have children with this disease, but I do have a daughter. Unfortunately, there are no special schools around you. Try to teach her when you are around with flashcards with numbers and letters on them and play symphony music while they sleep, it is supposed to stimulate the brain while the child sleeps,it helped mine. Get the necessary medical procedures done! They NEED to be done to find out what is going on! It is necessary for the childs well being!!! If there are things that could further the problem or help it, you will never know, cause the needed tests were never preformed. Try your best, stay patient, you and your family are in my prayers. Nicole