Guest guest Posted September 21, 2001 Report Share Posted September 21, 2001 , email me privately if you would like to know about my experience with Leigh's and perhaps I can provide some support...gdudgeon@.... gina( Matty's mom) new to group (mito/leighs) help! >>Date: Wed, 12 Sep 2001 23:52:47 -0000 >>Dear , > >We are so sorry to hear of your story. But do not give up hopr, sometimes,as >we have learned, the doctors make mistakes, and you just never know. Keep >praying and the pne up above will help. If he does have to leave you, please >find the strength to continue on. > > Understanding your pain, > > Ami and Shuli > >>hello everyone, >> >> My name is and new to the group. I have a very sick little >>boy named Connor. Connor had problems from the day he was born. >>Feeding, arching, iratable, unexplaned fevers, after numerouse >>hopsital visits and way to many tests to even get into we were not >>getting anywhere. My husband and I kept telling the doctors there >>was something wrong it was'nt until he started showing delayes in >>development that they thought there was somthing wrong. that was at >>about 3mths, shortly after that he started having horrible sezizures >>after having yet another eeg done they determined he had infintile >>spasms and would be put on ACTH (if that was not enough) them telling >>us that he would be brain damaged. After being on ACTH for over a >>week and not showing any progress of them stoping the doctor >>increased his level as high as they could go, it was at this time we >>decided to go to MAYO. It was the end of june our nuerologist called >>Mayo and got us an appointment within 3 days. After getting released >>from the hospital on a Saturday we headed up to MN. Driving over 12 >>hrs in two days and very determined to find out what was wrong. >>Conor saw the Nurologist there and he told us he thought he had a >>very rare genetic disorder and would call in a genetisist, the >>genetisit saw us and went through all of his test previously done and >>said that we were dealing with a genetic disorder that would be >>uncurable because they rulled out all the ones that could be helped. >>THey did LIver, Mussel, and skin biopsies and 6wks later said that >>they feel it is mito. After hearing that i got on the computer and >>looked at all Connors symtoms and compared. I feel he has Leighs >>Syndrome and now the doctors here say that is very possible- but >>still need to do further testing on him. He is now seven months old >>only 7 lbs more than at birth and just lays there, they say he cant >>hear, see and he cant swallow because he asperates so he has a G- >>tube. Connor has had a fundo-plication for his reflux and has has an >>enlarged liver for months now. I will we knew when he was going to >>die because waiting and taking care of a dieing child is very hard to >>do. If anyone out there has had a simialr situation or can offer >>support please do. >> >> >> >> > > >_________________________________________________________________ >Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > > >________________________________________________________________________ >________________________________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
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