Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi everyone, I just joined tonight, my godson was just diagnose with mito on monday. he has had health problems since he was 8 months old (he will be 3 in april) it started with seizures, two of which were 30 minutes long and one 45 minutes, and small ones in between. after his first seizure gabriel " forgot " how to say some of the words we were used to hearing him say. he goes through spells of not eating very much and will mostly only drink milk which i am a bit concerned with because of the sugar. he was diagnose with dilated cardio miopothy in september-october of 2003 and we know that he is having trouble with liver damage, which untill now we thoutht was from the seizure medication. and he has had a lazy eye for quite some time now, he was supposed to have it operated on but doctors wanted to try glasses first. now i suppose the surgery isn't even an option. we (mom, grandma, and i) don't know what to expect for gabriel, he does walk and is very happy but still does not talk too much. i don't even know how if he is considered " seriously ill " if anyone has any information/suggestions on how we can cope please let me know. thank you soo much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Welcome to the group. This a great place to share your joys and sorrows. Everyone is really supportive. If you have questions or concerns, post and someone is bound to be able to help. Most of us have been there done that sort of thing. My son Wyatt has complex I. He will be 5 at the end of the month. His issues started with seizures at birth like your godchilds. His seizures are now controlled with lamictal and keppra. Geri-Anne and Wyatt, Complex I > Hi everyone, > > I just joined tonight, my godson was just diagnose with mito on > monday. he has had health problems since he was 8 months old (he > will be 3 in april) it started with seizures, two of which were 30 > minutes long and one 45 minutes, and small ones in between. after > his first seizure gabriel " forgot " how to say some of the words we > were used to hearing him say. he goes through spells of not eating > very much and will mostly only drink milk which i am a bit concerned > with because of the sugar. he was diagnose with dilated cardio > miopothy in september-october of 2003 and we know that he is having > trouble with liver damage, which untill now we thoutht was from the > seizure medication. and he has had a lazy eye for quite some time > now, he was supposed to have it operated on but doctors wanted to > try glasses first. now i suppose the surgery isn't even an option. > > we (mom, grandma, and i) don't know what to expect for gabriel, he > does walk and is very happy but still does not talk too much. i > don't even know how if he is considered " seriously ill " > > if anyone has any information/suggestions on how we can cope please > let me know. thank you soo much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Welcome to the group. This a great place to share your joys and sorrows. Everyone is really supportive. If you have questions or concerns, post and someone is bound to be able to help. Most of us have been there done that sort of thing. My son Wyatt has complex I. He will be 5 at the end of the month. His issues started with seizures at birth like your godchilds. His seizures are now controlled with lamictal and keppra. Geri-Anne and Wyatt, Complex I > Hi everyone, > > I just joined tonight, my godson was just diagnose with mito on > monday. he has had health problems since he was 8 months old (he > will be 3 in april) it started with seizures, two of which were 30 > minutes long and one 45 minutes, and small ones in between. after > his first seizure gabriel " forgot " how to say some of the words we > were used to hearing him say. he goes through spells of not eating > very much and will mostly only drink milk which i am a bit concerned > with because of the sugar. he was diagnose with dilated cardio > miopothy in september-october of 2003 and we know that he is having > trouble with liver damage, which untill now we thoutht was from the > seizure medication. and he has had a lazy eye for quite some time > now, he was supposed to have it operated on but doctors wanted to > try glasses first. now i suppose the surgery isn't even an option. > > we (mom, grandma, and i) don't know what to expect for gabriel, he > does walk and is very happy but still does not talk too much. i > don't even know how if he is considered " seriously ill " > > if anyone has any information/suggestions on how we can cope please > let me know. thank you soo much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Welcome to the group. This a great place to share your joys and sorrows. Everyone is really supportive. If you have questions or concerns, post and someone is bound to be able to help. Most of us have been there done that sort of thing. My son Wyatt has complex I. He will be 5 at the end of the month. His issues started with seizures at birth like your godchilds. His seizures are now controlled with lamictal and keppra. Geri-Anne and Wyatt, Complex I > Hi everyone, > > I just joined tonight, my godson was just diagnose with mito on > monday. he has had health problems since he was 8 months old (he > will be 3 in april) it started with seizures, two of which were 30 > minutes long and one 45 minutes, and small ones in between. after > his first seizure gabriel " forgot " how to say some of the words we > were used to hearing him say. he goes through spells of not eating > very much and will mostly only drink milk which i am a bit concerned > with because of the sugar. he was diagnose with dilated cardio > miopothy in september-october of 2003 and we know that he is having > trouble with liver damage, which untill now we thoutht was from the > seizure medication. and he has had a lazy eye for quite some time > now, he was supposed to have it operated on but doctors wanted to > try glasses first. now i suppose the surgery isn't even an option. > > we (mom, grandma, and i) don't know what to expect for gabriel, he > does walk and is very happy but still does not talk too much. i > don't even know how if he is considered " seriously ill " > > if anyone has any information/suggestions on how we can cope please > let me know. thank you soo much! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.