Guest guest Posted December 27, 2002 Report Share Posted December 27, 2002 Christy, welcome to the group. you have found the best group of people. I dont know what I would do with out them. I would love to hear more about your son. My daughter is 5 and has unspecified mito, however, Dr. Cohen feels it is dna dpletion verses alpers. He has alo suspected LCHAD and leighs. All we do know is that it is mito. She is globally delayed, intractable epilepsy, gtube, dysautonomia and some form of bleeding/bone marrow issues yet to be diagnosed. Please ask any questions you may have or just vent. hope to hear more from ya, >From: VisibleWorship@... >Reply-To: Mito >To: Mito >Subject: Re: Hello >Date: Thu, 26 Dec 2002 08:21:07 EST > > christy > >welcome to the group ! Can you give you any more information on yours >son's >symtpoms and why they think it is mito...and who diagnosed it and how? >That >would help us help you...feel free to post any and all questions you >have...we have all been where you are and know what its like to have all >these questions you are not likely to get answered by anyone but the moms >who >are dealing with this day in and day out... > >deb _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 3 months FREE*. http://www.hotmail.msn.com/cgi-bin/getmsg & HL=1216hotmailtaglines_virusprotection\ _3mf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 hi I am new here and would like to introduce myself. My name is Jo and I have a 3 1/2 year old son,, who was just dx as having MERRF on 4-14-03. I have been doing all kinds of research but am finding little. We are even having trouble getting the vitimans(been to 3 places and all the suppliers can't get them in te right dose) They put him on mito cocktail. 's symptoms are ataxia and speach delay. He is having a 23 hour video screening for epilepsy in a week since he has no known seisures. Any infomation about MERRF anyone could give me would be great I would also love to talk to someone going throuh the same problems or same dx or a mom like me trying deal with whatever might be coming next. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Hi Daisy: I am 450. I am having my surgery July7, 2004. Open RNY I too have problems bathing and going to the bathroom. I clean as best as I can and I do have my Doctor setting up to have a visiting nurse come to my home 3 to 4 times a week after my surgery to help me bath to help prevent infection. I too live alone. It is so very frustrating not to be able to do a simple task as bath or wipe yourself. I was a woman who bathe 2 to 3 times a day before I got to big. I cry endlessly! Ask your doctor. Surgery date: July7 450 Goal: 150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 i hear you on not reaching.. i cannot wait till wheni an reach behind and not get a pinch in my side and not have to almost turn all the way around to think that helps to reach.. what u schubbies go thru tht skinny folks do not even think twice about..starlet comoparkkid76@... wrote:Hi Daisy: I am 450. I am having my surgery July7, 2004. Open RNY I too have problems bathing and going to the bathroom. I clean as best as I can and I do have my Doctor setting up to have a visiting nurse come to my home 3 to 4 times a week after my surgery to help me bath to help prevent infection. I too live alone. It is so very frustrating not to be able to do a simple task as bath or wipe yourself. I was a woman who bathe 2 to 3 times a day before I got to big. I cry endlessly! Ask your doctor. Surgery date: July7 450 Goal: 150 Quote Link to comment Share on other sites More sharing options...
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