Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 , Just in case you don't already know this: did you know that children with down syndrome often also have celiac disease, and that celiac disease can sometimes cause autistic-type symptoms? HTH, in IL new member > Hello. I'm , and my 13 yr old son has Down Syndrome, and over Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 hi victoria!! it is jodie, christopher's mom we met in MA. remember, i am one of the ones jillie took a liken to!! i havent had a chance to give you a call yet, but i will on friday if that would be a good day for you as well. good luck with you visit with dr. h on the 29th!!! i will tell you all about ours or you can look back through the posts from last thurs. feel free to email me at jlcals2003@ yahoo.com (no space after @) it was a pleasure meeting you and your family in MA and i hope to cont to talk with you!! this is a great group of people here and they will try and help with what ever you need emotionally!! good luck!! jodie ps jillie was just the cutest!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi , Glad to hear from you. We met (briefly) at the RSS get together in Mass. I hope we can answer all your questions or at least get you pointed in the right direction. I hope your daughter was alright after our meeting. Many of the kids at the get together seemed to have formed war parties and were actively hunting anything that moved. I know I was ambushed several times. Anyway, welcome to our group. Ken M > Hi Guys, > I've been reading your messages for a week and an really impressed > with the support you give one another. I found out about the support > group last week when I attended an RSS get together in Massachsetts > with my husband Errol, son Ethan age 5 and RSS daughter Jillie almost > 2. > > Jillie had a GT placed when she was 3 months old and a fundoplication > when she was almost 8 months. She had the fundo so young as she had > been in the ICU multiple times with aspiration pneumonias which > subsequently damaged her lungs. GJT's were tried several times prior > to the fundo but she had several intussussceptions (bowel > obstructions). After the fundo, she gained 9lbs in 6 months and I was > scolded by Dr H at convention last year for making her too fat. She > did have some problems with retching for a while which resolved early > this year with the addition of periactin. > > Nowadays, she is fed pretty much exclusively via GT and needs oxygen > to sleep or when she gets any respiratory infection. She is not on GH > as of yet but we do have our first appointment with Dr H in NY this > Thursday. I think she is still a little too chubby in relation to her > height to start GH just yet. She has been on a weight maintenance > program for 9 months (i.e. aim is to maintain vs. gain weight)! > > I enjoyed meeting some of you last year at convention and then most > recently at the RSS get together in MA. When we were at convention > last year, I could not be as sociable as I would have liked as Jillie > was quite fragile needing oxygen when upset with noise etc.. She is > hardier this year and copes with social activities better. Indeed she > was scooting up to several women in MA last week and flirting with a > few of the men. > > Hope your lives get easier and remain enriched by friendship. > > Best wishes, > > Howland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Hello everyone. My name is Darlene and I was diagnosed with Mitochondrial Cytopathy in April at the Mayo Clinic in Rochester, MN. I'm 34 years old and living in Chippewa Falls, WI. I write books for young and middle readers. I don't know very much about this disease and whenever I look something up, my brain starts to hurt from all the medical terms. I take several supplements and they seemed to work at first but lately I've been " dragging " again. People tell me a lot that I'm " just depressed " . I look forward to hearing from and talking to people who really understand what it's like to have no energy. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Darlene Welcome to the group. Ask any questions you have and we will try to respond with our experiences. laurie > Hello everyone. My name is Darlene and I was diagnosed with > Mitochondrial Cytopathy in April at the Mayo Clinic in Rochester, MN. > I'm 34 years old and living in Chippewa Falls, WI. I write books for > young and middle readers. > > I don't know very much about this disease and whenever I look > something up, my brain starts to hurt from all the medical terms. > > I take several supplements and they seemed to work at first but lately > I've been " dragging " again. People tell me a lot that I'm " just > depressed " . > > I look forward to hearing from and talking to people who really > understand what it's like to have no energy. > > Darlene > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Hi Darlene, Welcome you can find a lot of information on the mitochondrial disease web sight at www.umdf.org. I have mito and my 2 children ages 16 and 20 though my 20 year old is more severe he also has severe cyclic vomiting and severe P.O.T.S and Dysautonomia all secondary to mitochondrial he gets IV therapy once a month for hydration. We take the vitamin supplements as follows B100, COQ10, And liquid levo carnitine. I wish you the best I just wanted to say welcome to a great group of people where you will get lots of support by the way would love to read your books. Hugs, Donna K ---- see_yadi_catch DarleneASP@...> wrote: > Hello everyone. My name is Darlene and I was diagnosed with > Mitochondrial Cytopathy in April at the Mayo Clinic in Rochester, MN. > I'm 34 years old and living in Chippewa Falls, WI. I write books for > young and middle readers. > > I don't know very much about this disease and whenever I look > something up, my brain starts to hurt from all the medical terms. > > I take several supplements and they seemed to work at first but lately > I've been " dragging " again. People tell me a lot that I'm " just > depressed " . > > I look forward to hearing from and talking to people who really > understand what it's like to have no energy. > > Darlene > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Hello Darlene!! Welcome from another relatively new addition to the group. Sadly, I've found you have to both grow a thick skin to " others " confronting you with their own interpretation of your situation ( " you are depressed " ... " you should exercise / get out more " and so on) AS WELL AS find a way to interact and respond that doesn't alienate them. I have had a bad habit of telling people my medical history and frightening the wits out of them after they give me helpful quick advice on my diet and/or exercise and/or attitude ... It is not unusual for some of us to be depressed some of the time, because a) that's a normal thing amongst people of all types, and we are faced with more energy challenges and other things to overcome than the " average bear " (to quote Yogi Bear) ... Here tho are a great group of people that will always understand and, quite often, make you smile. cheers > Hello everyone. My name is Darlene and I was diagnosed with Mitochondrial Cytopathy in April .. -- *********************************************************** Kelta Vineyard __________________________________________________________ Find your next car at http://autos.yahoo.ca Quote Link to comment Share on other sites More sharing options...
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