Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Hi everyone....I am going to try and come on the board a bit more, I am sure there are still some families on here that I remember and you hopefully remember us.I am Jonah's mom????Anyhow, we are doing ok....I am not sure if I posted about our new baby, new?.....well actually he will be one on Dec. 20th! Wow time flies! He is also assumed to have the same mito disorder as Jonah and is being treated as such.He has not undergone a biopsy and I don't really want him to anyway.It's not necessary as it wouldn't affect his treatment in any way.We still have not seen anyone in the US as yet.Jonah and Isaac are being treated with carnitine only at this time.We just found out that Isaac has to get a gtube inserted.We are pretty upset about that, especially me as I have really been enjoying being able to breastfeed ,I never got that chance with Jonah as he went on a tube right away.Isaac is really different from Jonah in a lot of ways, so it is hard to accept he has a problem.Jonah is doing quite well, and is in preschool now.(he's 31/2).He loves it too! He is walking now and learning sign language.Well...let meknow how you all are doing and for all those familes I don't know I am looking forward to getting to know you!Thanks and have a great day! >From: Mitoegroups >Reply-To: Mitoegroups >To: Mitoegroups >Subject: Digest Number 763 >Date: 7 Dec 2000 09:38:12 -0000 > > >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. >------------------------------------------------------------------------ > >There are 5 messages in this issue. > >Topics in this digest: > > 1. to Virgina > > 2. Re: Water therapy--swimming > > 3. Re: to Virgina > From: Ginny581@... > 4. migraine listserve?????? > From: sei1126@... > 5. Re: Long, but beautifully written story > From: sweetjayne1@... > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 1 > Date: Wed, 6 Dec 2000 09:04:20 -0500 > >Subject: to Virgina > >Virginia, >I will send it snail mail. Hope to get it in the mail before this weekend. >Melinda > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 2 > Date: Tue, 5 Dec 2000 10:30:26 -0700 > >Subject: Re: Water therapy--swimming > >My girls both do water therapy. is doing well enough that actually >hers is more like traditional swimming lessons. walks in the water >while holding onto flotation aids, does range of motion and stretching >exercises, and practices breath control. She tires quickly though, and >doesn't work for longer than about 20 minutes at a time. We take her to >a rec center that has a special pool with a wheelchair ramp, partial >zero-entry area, and is kept at a higher temperature than the other >pools. Cold water can use up energy pretty quickly. >Judith > > Re: Long, but beautifully written story > >Dear , >Thank you so very much for sharing this piece...it reaches out and touches >that sweet place in our souls where we know the real issues of life >reside...I am privileged to be a part of this 'family'. > > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > > > ________________________________________________________________________________\ _____ Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2000 Report Share Posted December 9, 2000 Hi everyone, Update on the Marshall family. We had meeting with Dr. Scaglia of Baylor medical at Texas Childrens hosp in Houston. All four children were examined closely and were invited to participate in a study concerning a3243g melas mutation at Texas Childrens. This is a study funded by a mda grant and a umdf grant. I was delighted to meet Dr. Scaglia and to learn that he has spent time with DeVivo and others at Columbia studying the mutation and that he and Schoffner are planning a mito seminar in Dallas next year... Anyone know anything about this meeting ? At last we have seen a Dr. who actually is very knowledgeable concerning melas....Halleluah ! Joe Marshall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2000 Report Share Posted December 9, 2000 I know that Shoffner is a part of the program in San Diego in February. Cohen, DiMauro (with or without DeVivo ?), Haas and Shoffner are the big people at it. I have not heard of the Dallas one. Virginia, Emma's Mom (15 months, Complex I) Virginia M. Buchanan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 hello, my name is janet from near green bay wi. i just found this list. i have been on one called melas for a year or two now. this last post caught my eye when you mentioned dallas. That is where my brother moved a few years ago and got married last year. Anyway, i am a member of the united mitochrondrial disease foundation out of monroeville pa. The last seminar in columbus was just too costly for us to go to. Could you be sure to find out the pricing. By the way, my family has a history of melas (mitrochondrial encephalitis lactic acid stroke like events) which can be mild or severe. So far, the only ones known to have it for sure are myself (38 and have diabetes, lack of feeling top of foot, evidence of seiures on mri, nerve damage to eyes). i am treating with diabetic med and megadoses of caritine,vitamin c, co-enzyme q-10, and b12. My sister (she went into a coma when she was 27 for 2 days, then came out. 4years later same thing. 2 months later a stroke effecting her speech. she was then diagnosed with melas. started dca and vitamin therapy but lost nerve strength and died in october. my mother died in 1988 from what we thought was a simple seizure of her arm shaking but 4 days later she died after going into a coma. we now suspect melas. she was 48. both her and my sister were 5 ft, barely 105 at there heaviest. my brother who is now 33 has not been tested because of life insurance issues. he is 5 ft 3 in and hard to get to 105 pounds. we suspect melas. my sisters first baby was born premature at 26 weeks and lived an hour. her second baby was born at 29 weeks. he is now 10 but very skinny. seems to be healthy though. my boy is 8 now but is heavier. i am heavier,(as opposed to my sister) 5 ft 2 in and 130 lbs. My aunt (mothers sister) died last year at age 56 after battling diabetes and kidney problems. anyhow, we were diagnosed by a doctor in milwaukee. actually a pediatrician by nature but studied the mito diseases. I have a therory that i got the diabetes end of the deal because i am heavier than my sister. and have not gotten the muscle weakness yet because of my body weight. Anyhow, i am not taking the dca yet because now it is expensive (not free). but i am taking the vitamins and trying to get the insurance company to pay. well enough for now. I would be interested in the seminar in dallas. Re: Digest Number 763 Hi Joe :-) jmarsh1229@... wrote: I was delighted to meet Dr. Scaglia and to learn that he has spent time with DeVivo and others at Columbia studying the mutation and that he and Schoffner are planning a mito seminar in Dallas next year... Anyone know anything about this meeting ?I'll post more information when I have it, but can say that the meeting is planned for this coming June here in Dallas. I'll make some inquiries and see if I can get any more information for everyone!! BIG hugs, Kass, mom to Chance(7) and Madison(4), suspected mito, and Abby(2) Dallas, Texas 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 December 10, 2000 Report Share Posted December 10, 2000 In a message dated 12/10/2000 12:43:02 AM Eastern Standard Time, jsample@... writes: << Anyhow, i am not taking the dca yet because now it is expensive (not free). >> Janet: There aren't any clinical trials for dca that you would be eligible for? I am interested in pursuing dca treatments for my son, he has complex III. I don't know if he would be eligible for dca but he has elevated lactic acid. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 Dear Janet: How horrible to have so many family members affected; I thought the odds of that many people having MELAS within one family were almost nil. I bet some of the people at the big centers (Columbia, Atlanta, UCLA, or Cleveland) would like to study your family with this incidence of serious MELAS. I hope you can take the DCA, too; aren't the people at UF or UCLA accepting new patients into their study? My sympathies and good thoughts are with you and your family. Virginia, Mom to Emma (15 months, Complex I) Virginia M. Buchanan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 Janet, the University of Florida and UCLA have ongoing clinical trials for DCA (dichloroacetate). If you look at the NIH website under clinical trials, they give you contact information; the two schools also have information at their websites. They don't limit the studies to Complex I or Complex III but look at the elevations in lactate to determine eligibility. The UCLA criteria are more stringent from my reading of them. Virginia, Emma's Mom (15 months, Complex I) Virginia M. Buchanan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 , Here are info sites about the DCA studies in USA. Hope this helps. My wife, Vickey, was in the UCSD study until she passed away on Nov. 29. God bless you all, Ted http://www.hnrc.cpmc.columbia.edu/melas.html http://cla-dca.gcrc.ufl.edu/ http://biochemgen.ucsd.edu/mmdc/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 Judith, I got the registration forms for the San Diego program from the UMDF program / booklet that they send out to us. If you look at their web site, they give you information about it, too. I am not sure of the correct spelling of Haas or Hass. I know he is one of the big guys in these disorders from seeing his name over and over with Shoffner, De Vivo/DeMauro and Cohen. It will be great for you to have input from these guys if you can get it. Good luck. Virginia, Emma's Mom Virginia M. Buchanan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 What program in February?? My daughters have an appt with Dr. Hass (or Haas, I've seen it spelled both ways and am not sure) in SD in February. What is that date? Where can I can more info? Judith Re: Digest Number 763 > I know that Shoffner is a part of the program in San Diego in February. > Cohen, DiMauro (with or without DeVivo ?), Haas and Shoffner are the big > people at it. I have not heard of the Dallas one. > > Virginia, Emma's Mom (15 months, Complex I) > > Virginia M. Buchanan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 Hi Joe :-) jmarsh1229@... wrote: I was delighted to meet Dr. Scaglia and to learn that he has spent time with DeVivo and others at Columbia studying the mutation and that he and Schoffner are planning a mito seminar in Dallas next year... Anyone know anything about this meeting ? I'll post more information when I have it, but can say that the meeting is planned for this coming June here in Dallas. I'll make some inquiries and see if I can get any more information for everyone!! BIG hugs, Kass, mom to Chance(7) and Madison(4), suspected mito, and Abby(2) Dallas, Texas Quote Link to comment Share on other sites More sharing options...
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