Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 I know that there isn't a way to really know what the future holds for kids with mito, but my son Conner is 10 and was just diagnosed last week. I keep wondering if maybe the doctor was wrong, he just doesn't seem all that effected. Can someone tell me if it's possible for a child with mito to have a fairly " normal " life? What is the best case scenario? The only thing we've been told is the worst case and I need something more positive to cling to, even if it's not very realistic! PLEASE, someone post something encouraging! Thanks, Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and CVID), Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), Evan (10, mild hearing loss/unaided), and Kelsey - surviving triplet (8, hearing - but not listening!) _________________________________________________________________ Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Our geneticist told us she sees a boy with mito that simply has some ataxia, so he has some movement problems and is exercise intolerant. She was the only person we've talked to about mito that gave us any hope. Everyone else was always so " dooms day. " I know it affects kids and people differently, but maybe this is a little hope. Vicki mom to Caden (11 mo) possible mito. Best Case Scenario??? > > I know that there isn't a way to really know what the future holds for kids > with mito, but my son Conner is 10 and was just diagnosed last week. I keep > wondering if maybe the doctor was wrong, he just doesn't seem all that > effected. Can someone tell me if it's possible for a child with mito to > have a fairly " normal " life? What is the best case scenario? The only > thing we've been told is the worst case and I need something more positive > to cling to, even if it's not very realistic! PLEASE, someone post > something encouraging! > > > Thanks, > > Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and > CVID), > Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), > Evan (10, mild hearing loss/unaided), > and Kelsey - surviving triplet (8, hearing - but not listening!) > > _________________________________________________________________ > Is your PC infected? Get a FREE online computer virus scan from McAfee® > Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Although my daughter is only 2 she has already shown improvement since her diagnosis and starting treatment. She does have many secondary disorders, but overall she is a pretty typical two year old. Before her treatment began it was noticeable that she was ill. Now people are amazed to hear that she has so many medical problems. I'm sure you know that every child is different and mito can react in many ways, but for us having a diagnosis with a way to treat it gave our child her childhood. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 I think there ARE more mild (if that's possible) cases of mito. In the case of our 10-year old granddaughter, we have ataxia, nystagmus, some slow speech, some learning disability, some muscle discomfort, some temperature inconsistencies, some imbalance. She runs awkwardly, but tries, gets some help from a general aide in school with stairs and other safety issues. She has just been started on Carnitine so we are hoping for some muscle improvement. She will begin CoQ10 shortly, then B-complex after it's verified she is tolerating the others ok. She sees a Dr. Marsden at Boston Children's Hospital. We've got to believe there is hope -- if not for a cure or reversal, then at least for stability and a fairly normal life. Good luck, hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 was diagnosed at age 1 1/2 after being very very sick from birth. At age two we thought we would only have months left. She is now four and a half yrs. old and doing amazing. She has a million problems but each one being treated agressively and successfully and I actually see a future for her. We do not know how long we may have. Right now I have already had longer than I thought I would so I know I am blessed. I know that there are people who are just mildy affected. There are probably millions of people mildly affected who don't even know they have it! Someone who never even heard of it! Chin up. Dawn Quote Link to comment Share on other sites More sharing options...
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