Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 CONGRATULATIONS!!!!!! This is wonderful. And thanks for sharing, it gives us SO MUCH HOPE. Love, Angeles mom to Ines, 11 months, PMG (seems almost confirmed now), making progress (no subject) Hi everyone I went to a new nurologist today and a wonderful thing happened. She talked to me!!!!! Not just medical BS but stuff I could understand. I went hoping to be told that was misdiagnosed because he is doing so well, but thats not the case. In fact she showed me that he has PMG and parts of his brain where the gyria are too large and rough also. It has a name but I dont have it right here. Anyway she said another part of his brain is compensating for the loss. She told me that there is no explaination as to how this works. ( All brains are different. You can look at two pictures (MRI " S) and see that they greatly resemble each other and then see the children and they have totaly different developental progress. But the thing that got me the most was she told me my son should live!!!!!!!!!! that unless something went drastically wrong his lifespan expectancy was the same as any other 6 year old!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She gave me her phone number and told me to call for any reason, even if it was to ask a question or voice a concern. (WOW) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 my nephew has pmg.tommy was diagnosed at 3 months old.it was devastating news.he is now 7 years old and a joy to be around.he is currently on nurotin and tegratol.he hasn't had a bad seizure for atleast 1 year.he has very small and quick seizures.they are only about 1 second long.he rolls his eyes back and then it's over. when tommy was 1,he had brain surgery to remove the deformity in his brain.his speech is that of a 2 or 3 year old,but we understand him pretty well.he lets us know when he's hungry,thirsty,etc.he gets into the same trouble as his cousins,he loves musicand loves to dance.i swear he knows every word to the wild wild west by will smith.he's truly a blessing.so to everyone out there,just take it 1 day at a time.everything is going to be just fine.these children are our angels in disguise. ANA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 my nephew has pmg.tommy was diagnosed at 3 months old.it was devastating news.he is now 7 years old and a joy to be around.he is currently on nurotin and tegratol.he hasn't had a bad seizure for atleast 1 year.he has very small and quick seizures.they are only about 1 second long.he rolls his eyes back and then it's over. when tommy was 1,he had brain surgery to remove the deformity in his brain.his speech is that of a 2 or 3 year old,but we understand him pretty well.he lets us know when he's hungry,thirsty,etc.he gets into the same trouble as his cousins,he loves musicand loves to dance.i swear he knows every word to the wild wild west by will smith.he's truly a blessing.so to everyone out there,just take it 1 day at a time.everything is going to be just fine.these children are our angels in disguise. ANA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 I to know many in this situations. It is much hard for the moms and the childrens. One mom is not able to do diet and interventions because the father deliberatly gives of him daughter dairy every time he gets her. Sondra In Autism_in_Girls , EbuyerMTC@a... wrote: > Hi, > Anyone on this list divorced from their child's father and having lots of > issues with ex regarding child? Especially if ex is remarried to a very > unpleasant manipulative woman? Anyone willing to post or email me privately, I'd > love some support. > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 I to know many in this situations. It is much hard for the moms and the childrens. One mom is not able to do diet and interventions because the father deliberatly gives of him daughter dairy every time he gets her. Sondra In Autism_in_Girls , EbuyerMTC@a... wrote: > Hi, > Anyone on this list divorced from their child's father and having lots of > issues with ex regarding child? Especially if ex is remarried to a very > unpleasant manipulative woman? Anyone willing to post or email me privately, I'd > love some support. > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 It certainly can be a miserable situation I've heard from friends. When I read the part about remarried to an unpleasant, manipulative woman I couldn't help but snicker. God bless your situation! Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 It certainly can be a miserable situation I've heard from friends. When I read the part about remarried to an unpleasant, manipulative woman I couldn't help but snicker. God bless your situation! Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 It certainly can be a miserable situation I've heard from friends. When I read the part about remarried to an unpleasant, manipulative woman I couldn't help but snicker. God bless your situation! Debi Quote Link to comment Share on other sites More sharing options...
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