We would like to remind you of this upcoming event. Weely MDA Chat Summer Schedule Date: Sunday, October 2, 2005 Time: 9:00PM EDT (GMT-04:00) We will not have...
Mito@yahoogroups.com
Oct 2, 2005 1:02 am
54654
Does anyone know what this could be,,,, my son has done this in the past, but not for quite some time, he awoke tonight, his body was warm, but it looked like...
Hi, everybody - Sorry that I've been out-of-touch - it has been a crazy and stressful week. I'll update on Emily's status in another email. We got our packet...
Hey there sorry you feel like you only have more questions. I will give my take on the ones you that I can...just remember they are opinions. First off...why...
Brandon did this initially, and it eventually developed into full out tremors. Is it restricted to one area of the body (arms/trunk?) or the whole body? I...
Hi, everybody - Emily spent another week at Hopkins, and was discharged on 9/23. The main issues were autonomic nervous system dysfunction (unsure whether due...
Hi, I feel terrible that you were left with this information and no one from Shoffner's office to speak with!! How awful. I expect to get responses that...
Thanks, Barbara and Keely, for all of your advice and experience - it has been really helpful! Emily was just upped to 0.1mg Florinef twice a day. She is still...
Hi, Anne - Thanks for all of these great ideas! I did speak with her endocrinologist, who does not think that she needs physiologic doses of hydrocortisone at...
Hey, Donna - So Emily is reacting like Tim did. I do not at all think that this will be a quick fix for her. I was hoping that you would reply to my message,...
Donna - Emily weighs 57 pounds. Her baseline fluids (for years now, since the kidney stones when we almost doubled fluids - we watch urine specific gravity,...
Karen - He told me right up front that the info would come in a packet and that if I wanted to discuss I would have to come in for a visit. He has actually...
Hi, Deb - It would be better to have less of a diagnosis! What I don't know is whether treatment for mito before the biopsies, especially the high Carnitor...
my son has a similar episode yet, his is more stimulated by things that are exciting . They are not nerves we are thikning my sons are almost seizure like. ...
NOW that i think of it, when zoe was younger she would have a type of shiver spell (when awake). lasted only a second. just looked like she all of a sudden got...
Kathy I cant even imagine what you must be going thru. Just know that I will pray for you, Emily and the rest of the family. Becca ... From: Kathy To:...
Hi there, We had the same issue with paying for the CoQ until we found a pharmacy that will compound the BVit, CoQ and Carnitor together. Our metabolic doc...
Enter your vote today! A new poll has been created for the Mito group: Does your child have a immunedeficency or clotting disorder and if so what diagnosis or...
Mito@yahoogroups.com
Oct 2, 2005 3:55 pm
54672
Hello, I was hoping I could get some help and answers on a poll question, please if you can take the time to go to my new poll and answer if your child has a...
Enter your vote today! A new poll has been created for the Mito group: Have you and /or your child been diagnosed with Mito and a autoimmune disorder? o...
Mito@yahoogroups.com
Oct 2, 2005 4:03 pm
54674
Hello Leah, My son Ryan has been on many field trips, in his old school they also went on an overnight trip to a nature center when he was in 5th grade. He...
I remember my son used to (and still does from time to time) will appear to 'shiver' especially when trying to have a BM. ... From: Mito@yahoogroups.com...
Two ideas - It sounds a lot like something called sleep myoclonus. When Abbey was an infant she would (seem to) wake; shake; go back to sleep. Neurology...
Hi Rachele, I pulled my son's labs from Mayo to see what our results said so maybe it would help you. We also did not get a report from Dr. Whiteman regarding...
Kathy - Are you seeing Neurology at Johns Hopkins in Baltimore? If so, Abbey was dx by & sees a Dr. Richard Kelley at Kennedy - Krieger. He is a terrific...
Grace will wake up shivering, when her blood sugar is low. Try giving him a snack high in complex carbs, before bedtime. With Grace, anything with peanut...
Hi, Kristin – When we started this journey, I spoke with Dr. Kelley by phone for over an hour, and he told me that he was taking a year’s sabbatical and...
We would like to remind you of this upcoming event. Weely MDA Chat Summer Schedule Date: Sunday, October 2, 2005 Time: 9:00PM EDT (GMT-04:00) We will not have...
Mito@yahoogroups.com
Oct 2, 2005 7:02 pm
54682
sending prayers to you Kathy <rivers_k1@...> wrote:st1\:*{behavior:url(#default#ieooui) } Hi, everybody – Emily spent another week at Hopkins, and...
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