Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 WOW, Ellen thank you VERY much for sharing s story. He has done so much more than anyone has ever predicted. When our Karly was about 12 months we were given the blow of .... she will Never walk, or talk, she is severely retarded (I hate this word) Unfortunately we don't have a success story for her at the age of 3 1/3. She is still unable to walk or talk. :-( But, she is progressing with her muscle tone. She can now sit up with little support. I am hoping that someday real soon she will beable to sit alone and then maybe crawl. She has started to try to catch herself when she falls forward. However her tone is so low that she continues to fall. Ellen I don't know if you said that can talk. I was just wondering. I just wonder about our kids when doctors and others are so quick to say they aren't able to understand what is going on around them. I think they know a lot more then they are given credit for. I think the biggest problem is in the communication center of the brain. They can't get their message out. Maybe just maybe they understand but, can't tell anyone. God Bless to all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 on 3/4/00 8:41 AM, The Seiz Family wrote: > From reading many of the post on this list, it has brought back many memories for me. So that I did not want to remember, and so that I did. I > wants you all to know there is " HOPE " , for these kids. Lot of it. > >, Ellen, My daughter is 14 and we have been through many of the same heartaches and joys that you have. There is hope - and it comes in all different packages. is the neighborhood miracle and we just take each day with her as it comes. All the best. ML > > -- Lou mom to ,14 Complex I & III; Jeff 16 and Greg 10 (typical active boys) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Ellen, >thank you for your email Iread twice and thank you for giving us hope. Vange New to this list! > > > Hello Everyone, > > My name is Ellen, I have a son, , who is now 13, and has had problems > all of his life. I also have a healthy normal 16 year old Daughter, Becki. > I am married to Dave, who also has systemic Sarcoid. Which has disabled > him. > > has had problem from birth with lactic acidosis, metobolilic acidosis, > GI dismotility, GI reflux, mimi strokes, learning disabilities, muscle lose, > RSD, and this list can just keep going. Mainly problems have been > from his GI tract. Now the question is what came first the chicken or the > egg. We had been in the search for answers for years. But it got the > point, that need to be a kid, and we needed to be a family. So we > stop all searching, because we did not have a computer, or lots of resources > to help for one. But it was just time. > > At age 2 it was felt that did have a mitochondrial disorder, so we had > the muscle biopsy done. After waiting for 4 months, it came back > inconclusive. Which really did not tell us much. By this time was > TPN Dependent, and thriving. He still had trouble with > pseudo-obstructions, but was moving on. Also at this time we were told that > he may never walk, talk, go to school, or making it to age 4. I have to > tell you, it gave us more fight to find out what was wrong with our son. We > had been accuse of not taking care of our son right, we had been told we may > never know what is wrong with him, or why. We had been asked at one point > if my son got very sick, we should just let him go. It would cost to much > to keep him going. Yes we have been to hell and back, many times, but > never, ever did we give up. > > Today, my son is 13, goes to regular school, making honor roll, in the band, > and does boys scout. He does have limits, but these we can live with. He > is still TPN dependent, and has obstruction problems, a long with many GI > problems. He also now has some muscle lost, and weakness, this is why we > are now back to searching, the doctors are back to looking at mitochondrial > disorders. He has also developed what they think is RSD. Which is Reflex > septataic Disaphy. I know I just spelled that wrong. But is has to do with > the nerves. The nerves are tell his brain, there is pain. There is not > reason for this pain, but it is like nothing any of us have ever felt. This > is another reason for relooking into mito disorder. > > They are hoping after 11 years, that their may be some muscle left to redo > the test. But in my heart, I don't think it would be any good anymore. In > April or May is going to have some major surgery, so they will get > some fresh muscle then. > > From reading many of the post on this list, it has brought back many > memories for me. So that I did not want to remember, and so that I did. I > wants you all to know there is " HOPE " , for these kids. Lot of it. There is > now support that was not there when we went thru this. People are a bit > more understanding to the unknown now. In the past, it was hard for people > to believe, that your child had some unknown disorder. We all learn the > hard why that the doctors are not " Gods " . They can only help us and our > children so much. But as long as we have others, who understand, and have > been there, we can help the doctors learn too. I am so surprised that so > many of your children have the GI problems. We had been told that this was > not normal for the mito disorders. Seizure, muscle lose, and brain damage > was the normal. My son, gave to many sign, then, that meant something else > was wrong. Now I see that this is not true. > > I hope I can be of some help to some of you. I know a couple of people on > this list already. If I can help in anyway that I can, I will. does > have a G tube, J tube, Central line, had the fundo, gallbladder removed, and > many different things done to him. > > Sorry this is a long one. Hopefully I have told you everything, it hard to > remember is all. > > Ellen > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/937/1/_/368657/_/952209487/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Ellen, Nice to see you on this list, too! A great bunch of people here. Welcome! The Seiz Family wrote: > > > Hello Everyone, > > My name is Ellen, I have a son, , who is now 13, and has had > problems > all of his life. I also have a healthy normal 16 year old Daughter, > Becki. > I am married to Dave, who also has systemic Sarcoid. Which has > disabled > him. > > has had problem from birth with lactic acidosis, metobolilic > acidosis, > GI dismotility, GI reflux, mimi strokes, learning disabilities, muscle > lose, > RSD, and this list can just keep going. Mainly problems have > been > from his GI tract. Now the question is what came first the chicken or > the > egg. We had been in the search for answers for years. But it got the > > point, that need to be a kid, and we needed to be a family. So > we > stop all searching, because we did not have a computer, or lots of > resources > to help for one. But it was just time. > > At age 2 it was felt that did have a mitochondrial disorder, so > we had > the muscle biopsy done. After waiting for 4 months, it came back > inconclusive. Which really did not tell us much. By this time > was > TPN Dependent, and thriving. He still had trouble with > pseudo-obstructions, but was moving on. Also at this time we were > told that > he may never walk, talk, go to school, or making it to age 4. I have > to > tell you, it gave us more fight to find out what was wrong with our > son. We > had been accuse of not taking care of our son right, we had been told > we may > never know what is wrong with him, or why. We had been asked at one > point > if my son got very sick, we should just let him go. It would cost to > much > to keep him going. Yes we have been to hell and back, many times, but > > never, ever did we give up. > > Today, my son is 13, goes to regular school, making honor roll, in the > band, > and does boys scout. He does have limits, but these we can live > with. He > is still TPN dependent, and has obstruction problems, a long with many > GI > problems. He also now has some muscle lost, and weakness, this is why > we > are now back to searching, the doctors are back to looking at > mitochondrial > disorders. He has also developed what they think is RSD. Which is > Reflex > septataic Disaphy. I know I just spelled that wrong. But is has to > do with > the nerves. The nerves are tell his brain, there is pain. There is > not > reason for this pain, but it is like nothing any of us have ever > felt. This > is another reason for relooking into mito disorder. > > They are hoping after 11 years, that their may be some muscle left to > redo > the test. But in my heart, I don't think it would be any good > anymore. In > April or May is going to have some major surgery, so they will > get > some fresh muscle then. > > >From reading many of the post on this list, it has brought back many > memories for me. So that I did not want to remember, and so that I > did. I > wants you all to know there is " HOPE " , for these kids. Lot of it. > There is > now support that was not there when we went thru this. People are a > bit > more understanding to the unknown now. In the past, it was hard for > people > to believe, that your child had some unknown disorder. We all learn > the > hard why that the doctors are not " Gods " . They can only help us and > our > children so much. But as long as we have others, who understand, and > have > been there, we can help the doctors learn too. I am so surprised that > so > many of your children have the GI problems. We had been told that > this was > not normal for the mito disorders. Seizure, muscle lose, and brain > damage > was the normal. My son, gave to many sign, then, that meant something > else > was wrong. Now I see that this is not true. > > I hope I can be of some help to some of you. I know a couple of > people on > this list already. If I can help in anyway that I can, I will. > does > have a G tube, J tube, Central line, had the fundo, gallbladder > removed, and > many different things done to him. > > Sorry this is a long one. Hopefully I have told you everything, it > hard to > remember is all. > > Ellen > > ----------------------------------------------------------------------- > > ----------------------------------------------------------------------- > Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 , does talk, but did not really start until after the age of 4. He did understand things we were telling him. You could see it in his eyes. He does have a slight speech problem, and has trouble picking the right word sometimes. For the most part he hold great talks, you just have to over look the wrong word once in a while. Don't give up hope on any of it. was very late in doing many things, but has come a very long way. He had trouble with reading. Starting in the 3rd grade he could not get past the letter G. By the end of the school year he was reading Jurassic Park. I am not kidding. We just about fell on the floor. We are so proud of him. So hang in there they just don't want to show us, until they can do it right. LOL Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 WOW Ellen, his story is just incredible. Thank you. << , does talk, but did not really start until after the age of 4. He did understand things we were telling him. You could see it in his eyes. He does have a slight speech problem, and has trouble picking the right word sometimes. For the most part he hold great talks, you just have to over look the wrong word once in a while. Don't give up hope on any of it. was very late in doing many things, but has come a very long way. He had trouble with reading. Starting in the 3rd grade he could not get past the letter G. By the end of the school year he was reading Jurassic Park. I am not kidding. We just about fell on the floor. We are so proud of him. So hang in there they just don't want to show us, until they can do it right. LOL Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Ellen, Thank you for your story it gives myhusband and I hope. Vange Re: New to this list! > From: Dillr@... > > WOW Ellen, his story is just incredible. Thank you. > > << > > , > > does talk, but did not really start until after the age of 4. He did > understand things we were telling him. You could see it in his eyes. He > does have a slight speech problem, and has trouble picking the right word > sometimes. For the most part he hold great talks, you just have to over > look the wrong word once in a while. > > Don't give up hope on any of it. was very late in doing many things, > but has come a very long way. He had trouble with reading. Starting in > the 3rd grade he could not get past the letter G. By the end of the school > year he was reading Jurassic Park. I am not kidding. We just about fell > on the floor. We are so proud of him. So hang in there they just don't > want to show us, until they can do it right. LOL > > Ellen > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/936/1/_/368657/_/952290019/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Ellen, I know it get better because has already been much better now that the testing are done. I laugh everyday and play with my kids even when I should be getting the house work done. I will always have hope of the future. The kids are both taking the bus to school everyday this year. Sometimes it's not easy Vange Re: New to this list! > > > Vange, > > We all need hope. We have been dealing with this for 13 years. It lots of > hard work on everyone. But if after this biopsy, we do find he does have a > mito, we know what we have done was the right thing. > > I have to say the early years were very hard on us, and the family. But the > way we have learn to look at things is " take the goods day, and enjoy, take > the bad, and just get through it. " This has helped us great deal. So when > things are going well, let me tell you we enjoy every minute of them. > > One other thing, we have tried to take a negative and turn it into a > positive. Yes that can be real hard when you are so down, and depressed, > but we always try to find some good, even when things are real bad. Let me > tell you things have not always been positive with . We know we can > lose him at any given time. It hard to send you child off to school, or go > away for a weekend. You just done ever know. But with the way this world > works, something can happen to Becki, who is healthy, too. So if you love > them you have to let them go. > > > Ellen > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/1/_/368657/_/952360990/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 I wish the very best. Good luck a the biopsy. Vange Re: New to this list! > > > Vange, > > We all need hope. We have been dealing with this for 13 years. It lots of > hard work on everyone. But if after this biopsy, we do find he does have a > mito, we know what we have done was the right thing. > > I have to say the early years were very hard on us, and the family. But the > way we have learn to look at things is " take the goods day, and enjoy, take > the bad, and just get through it. " This has helped us great deal. So when > things are going well, let me tell you we enjoy every minute of them. > > One other thing, we have tried to take a negative and turn it into a > positive. Yes that can be real hard when you are so down, and depressed, > but we always try to find some good, even when things are real bad. Let me > tell you things have not always been positive with . We know we can > lose him at any given time. It hard to send you child off to school, or go > away for a weekend. You just done ever know. But with the way this world > works, something can happen to Becki, who is healthy, too. So if you love > them you have to let them go. > > > Ellen > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/1/_/368657/_/952360990/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 I wish the very best. Good luck a the biopsy. Vange Re: New to this list! > > > Vange, > > We all need hope. We have been dealing with this for 13 years. It lots of > hard work on everyone. But if after this biopsy, we do find he does have a > mito, we know what we have done was the right thing. > > I have to say the early years were very hard on us, and the family. But the > way we have learn to look at things is " take the goods day, and enjoy, take > the bad, and just get through it. " This has helped us great deal. So when > things are going well, let me tell you we enjoy every minute of them. > > One other thing, we have tried to take a negative and turn it into a > positive. Yes that can be real hard when you are so down, and depressed, > but we always try to find some good, even when things are real bad. Let me > tell you things have not always been positive with . We know we can > lose him at any given time. It hard to send you child off to school, or go > away for a weekend. You just done ever know. But with the way this world > works, something can happen to Becki, who is healthy, too. So if you love > them you have to let them go. > > > Ellen > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/1/_/368657/_/952360990/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
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