Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 , My son Carl (7-1/2 years old) has Leighs with Complex I and IV deficiencies. He can still walk but he has very little stamina so whenever we go to the grocery store, or even somewhere that he might have to walk more than 25 feet, we take his wheelchair. Sometimes he doesn't use it at all and sometimes he has to use it immediately - but he knows it's always there. I was worried about taking the step of getting a wheelchair because for one thing - Carl thought they were really cool and I was afraid he would regard it as a toy. I was also afraid that he would become too dependent upon it and quit walking, but nothing could have been further from the truth. In fact I would say that because he has the wheelchair, he does more because he knows that if he does get too tired or needs a rest - it's there and he can take a rest and get up and walk some more. I also go to the MDA support groups here once a month and found that all of the parents were afraid of the same thing before they got the chair and then after they had gotten the chair, wondered why the heck they had waited so long. Good luck in whatever you decide but I wanted you to know that just because you get the chair, it doesn't necessarily mean they will never walk again. Terri >From: see2l@... >Reply-To: Mitoegroups >To: Mitoegroups >Subject: daughter sick >Date: Fri, 26 May 2000 23:22:11 -0000 > >Anybody had a kid that couldnt walk unaided, and what did you do >about it? I am debating if i should put her in a wheelchair, i'm >afraid shell never walk again that way. Her doctor is not sure if >she will be able to walk again I can't understand it she was walking >just fine two weeks ago. She has electron chain transport complex >five defeciency. We just discovered that she was having small >seizures so she is on medication. She has droopy eyelids so she >looks tired all the time. I'm just looking for some people going >through the same thing i am. With this disease it's hard not to feel >like your not the only one. I mean its not like cancer or MS >everybody knows about them. You tell someone she has a mitochondrial >disease they say mito what.Just want her to be normal. > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 I understand the fear and the desire for your child to be ok. And unfortunately, a child with mito can look fine one day and be completely different the next. Sometimes the change is gradual other times its overnight. I felt alone too when my daughter was diagnosed with Leigh's disease. It was back when there really wasnt much known out there, and they didnt know which defect it was. I tried and tried to find out and no one knew anything unfortunately. I was a single mother with two small children at the time. It wasnt even her doctor who diagnosed her, it was a visiting neurologist that diagnosed her. He was silver haired and had seen ONE case in his lifetime! No one knew much there at Arkansas Children's Hospital. none of the social workers could find a thing. I was totally alone and isolated. I was dealing with a disease I had never heard of, my doctors didnt tell me a thing, and I was essentially dealing with it alone. It was a scary time in my life that still stands out in my mind. I was 21 years old. Now for the good news, you have found this list, and there is the mitochondrialegroups one as well. There is a lot of info on the internet now about mitochondrial disorders. The UMDF is out there. There WAS no UMDF back when was diagnosed. There has even been a little headway made. The main thing is with all of us, YOU are NOT alone anymore! WELCOME Ayars Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Hi . How old is your daughter? My daughter is 22 months old. She has never walked and never beared any weight on her own .. She has beared weight when put in her parapodium. Well, I feel the same way you do about the wheelchair dilemma. is still young but I can't help but think about that, because she is not making any progress in the department of bearing weight. She never crawled or pulled up. She can't even support herself when laying on her tummy. I just try to take it day by day and hope that one day she will make some kind of progress that will lead me to be hopeful that she will walk one day. Oh, by the way, my Ashely is suspected of having a mitochondrial encephamyopathy. Waiting to hear from Georgia to see if they will see us for a muscle biopsy. I guess all I can say is that there are other people out there in the same boat and we just have to support each other. Pam mother of (mito encephamyopathy) Jake, and Brittany(your everyday run of the mill kids) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 I can relate to how you feel. Steph was 16 months when she began to sit up with little balance.... we laughed when she was around 3 because she would finally bear some weight (after two years of weekly physical therapy) and she would prop against something and get " stuck " - she couldn't go left or right, she couldn't drop down until she was so exhausted she would just let go and fall - only to do it again immediately afterwards. She began to scoot a bit around 3 and a half or four. When she began preschool we got her a wheelchair, mostly because she was easily tired and she looked so pathetic in a stroller. The wheelchair let her sit up and face the world as an equal and she could see as she " walked " . Like you, I was afraid that once we got it, the hope of her walking would vanish. When she was 5, the teachers let her push a little chair around, something like a walker. She took a few halting steps about the time she turned five. The next year, we kept the wheelchair at school, and only took it home if we planned a long walk like to the zoo or to the airport....but we got a big wheeled stroller for a bigger kid because we wanted to walk where the wheelchair wouldn't go. By the next year, the wheelchair was there, but only written into the plan for field trips. She needed a hand to stay in line or to go from place to place because she had little direction, and couldn't understand any words...but she walked from place to place on her own both at home and school...and by about 7 she pretty much quit crawling and walked most of the time. She also began using the stroller less and less. She's ten now. If we don't keep close tabs, she will mosey away a few feet and then burst into her " escape!! " run... both hands up and flying up and down in the air, knees going like a majorette, giggling at the top of her lungs, head back and hair flying. If she has more than ten feet on me, I don't catch her till she turns a corner since she has to slow down then! oh - and I gave the wheelchair to the school and asked them to find someone in preschool that could use it - for awhile anyways! Kathy ª¿ª Re: daughter sick > Hi . How old is your daughter? My daughter is 22 months > old. She has never walked and never beared any weight on her own > . She has beared weight when put in her parapodium. Well, I feel > the same way you do about the wheelchair dilemma. is still > young but I can't help but think about that, because she is not > making any progress in the department of bearing weight. She never > crawled or pulled up. She can't even support herself when laying on > her tummy. I just try to take it day by day and hope that one day > she will make some kind of progress that will lead me to be hopeful > that she will walk one day. Oh, by the way, my Ashely is suspected > of having a mitochondrial encephamyopathy. Waiting to hear from > Georgia to see if they will see us for a muscle biopsy. I guess > all I can say is that there are other people out there in the same > boat and we just have to support each other. > Pam > mother of (mito encephamyopathy) Jake, and Brittany(your > everyday run of the mill kids) > > > > ------------------------------------------------------------------------ > Long Distance Relationship? Join beMANY! And pay less each month > for Long Distance. > http://click./1/4165/2/_/368657/_/959402329/ > ------------------------------------------------------------------------ > > 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 May 28, 2000 Report Share Posted May 28, 2000 Pam, My daughter is four years old and the only thing that bothers me about her walking is that she did it perfectly fine about three weeks ago. Every time i look at her it breaks my heart because i know she wants to be like the other kids and run and play on the park but she can barely hold her head up and she doesn't have the energy to do anything but stay on the floor. She complains that her feet hurt her, has anybody else had this problem? Also she seems to be extremely bloated im thinking its because of the vitamins and the constipation but im not sure any suggestions? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 , I am so sorry your daughter is going through such a rough time now. I don't know if this might be what is causing her feet to hurt, but my son has neuropathy which is particularly bad in his feet - and it does cause pain. He takes Neurontin and although it doesn't help with the weakness and low energy, it does at least help him feel better overall. Terri >From: see2l@... >Reply-To: Mitoegroups >To: Mitoegroups >Subject: Re: Re: daughter sick >Date: Sat, 27 May 2000 22:17:53 EDT > >Pam, > My daughter is four years old and the only thing that bothers me >about her walking is that she did it perfectly fine about three weeks ago. >Every time i look at her it breaks my heart because i know she wants to be >like the other kids and run and play on the park but she can barely hold >her >head up and she doesn't have the energy to do anything but stay on the >floor. > She complains that her feet hurt her, has anybody else had this problem? >Also she seems to be extremely bloated im thinking its because of the >vitamins and the constipation but im not sure any suggestions? Thanks! > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 In a message dated 05/27/2000 11:13:55 PM Eastern Daylight Time, see2l@... writes: << She complains that her feet hurt her, has anybody else had this problem? Also she seems to be extremely bloated im thinking its because of the vitamins and the constipation but im not sure any suggestions? Thanks! >> Pam: My typical daughter who has mito complains her feet hurt and she sleeps and rests quite a bit. She has clear cut muscle weakness in her tibia muscles. My atypical son who has mito gets very constipated despite medications for this and gets very bloated. I don't believe the vitamins cause any of this, I think they help. I wish I could offer suggestions but hope the answers are of some help. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 , Has your little girl been tested for " storage disorders " ? I know there are a bunch of them but you might want to ask her doctor. Some are treated with diet. Sorry I can't give you more ideas. Quote Link to comment Share on other sites More sharing options...
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