My son does not do well with cold and it really zaps his energy. It doesn't even have to be very cold and he will just shiver and shake and it takes a while...
Melissa, ((((((((((HUGS)))))))))) Sorry you are having so much trouble getting Hailee into school. I will be praying that it gets easier and there are no more...
Hi Anne, I think it will all turn out just awesome and I cannot wait to read the article. Do you know when it will come out? Thank you for being a voice for...
Hi, Where are you in Ohio? We just moved to the Columbus area in June. Anne ... From: lannapastor@... To: Mito@yahoogroups.com Sent: Tue, 31 Oct 2006...
AReckling@...
Nov 1, 2006 12:41 pm
66093
Thanks Karen, Right now, they are saying it should be on the newsstands on Monday - of course, that's if no big science news or some other news takes its...
AReckling@...
Nov 1, 2006 12:50 pm
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Julie - that's great that the NBC affiliate is going to do a special on Jude! Now you will have the chance to correct the magazine!!!! The way us mito parents...
AReckling@...
Nov 1, 2006 12:54 pm
66095
We are an hour East of Cleveland. I could give you tips on Dr's at CCF if needed. Lanna lannapastor@......
Hi, Dr. Carla Hannaford in her book "Smart Moves" says that tight heel cords are a sign that the fight-or-flight mechanism has been activated. It could be the...
Hi Lanna, We also live in Ohio (Cleveland) and we see Dr. Parikh too! If you have not seen Dr. Bruce Cohen's whitepaper on Mito, you might want to check out...
Anne, I am sure the story will be great! No need to worry about us. The more stories that get out there, the better understanding everyone will have of mito....
We just got our results back from Atlanta, telling us to return for a consultation in a couple of weeks with Dr. Shoffner (the letter was dated oct. 9th) so we...
I agree with Barb, Ann. The fact that you got a very huge major magazine to take on this subject is absolutely wonderful. May be more things will happen...
Jessica, Im so sorry for the frustration... being in Canada I know how hard waiting lists can be. I know the www.umdf.org has a contact email that you can ask...
Thanks for understanding Lisa! That is exactly how I feel - all of our kids are different and, right now, Asher is still able to walk, talk, sing, dance but he...
AReckling@...
Nov 1, 2006 5:07 pm
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In which issue will it appear?? ... From: AReckling@... To: Mito@yahoogroups.com Sent: Wednesday, November 01, 2006 10:57 AM Subject: Re: [Mito] nervous...
Anne, this makes me think of a good quote... "any press is good press"... in our case it is so true... Even if they do weigh too much on one end or the other...
Im very curious about how the ataxisuit will work with Brandon... I am trying not to have any expectations, but it sure would be nice if it helped even a bit. ...
Lanna, Our son Alex (3) has cold and heat intolerance. I never knew how intolerant he was until he had an MRI last month. In 45 minutes his temp dropped to...
Anne- I totally agree with what everyone said here. Big Kudos for you for getting the word out and it all about connections. Don't feel one once of guilt and...
Jessica, We too are trying to make a follow-up appointment. Have you tried to get an appointment with Dr. Kendall. Shoffner said that is who he wants us to...
My understanding of this (we're in Phoenix and have the opposite problem in the summer), is that the extremes make a metabolic stress on the body, which is the...
Hi Karen, My 4 y.o. daughter Zoe uses the Kay reverse walker with straight wheels on the front and no wheels on the back. It works well for her for now with ...
Hi everyone~ We heard from Dr. Axelrod late last week. She feels it isn't Dysautonomia, but damaged nerves as a result of countless times of opening Sean's...
Keely, can I ask what is an ataxisuit and ataxiatogs? Bev Mom to Cody, 7 undiagnosed with ataxia, severe sensorineuropathy, global developmental delays....
Wow, sorry your having such a hectic time! Why do people have to make everything so complicated?! Just when we think we have everything we need to proceed in...
Keep your chin up! Congrats on getting this far... I am sure you will do a great job giving both sides of Mito. Let us know how it goes. :) Darla: mommy to ...
Jumping in here, we have used theratogs for our Joey in the past and are presently ordering his own set. his will be for his knees up to his shoulders as he...
I am wondering about an e-mail directly to Shoffner?! I personally want to write him as well due to receiving the newest round of results on FHM. He was the...
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