I have a problem with one of my kids. His coach doesn't understand he has limitations. He sees that my son can do exercises sometimes, and then other times...
I am so happy for you, Darla! And Dr. Shoffner sounds like a wonderful physician. I hope you get all the answers you need to get the best care for your family....
Sorry so many intros came thru but I thought I had done something wrong that it didn't show up, silly me just kept trying. Thats just like I have done with my...
I know I am new here but I can be mouthy when it comes to my kid so I will tell you what I have already done re: people like this. I printed out the Facts...
Becca, Do you mind telling me where you live that temps stay that nice all year
round? I've been looking for a place like this. You can email me privately
if...
Darla, I bet it feels good to FINALLY have a specific diagnosis. I am very excited that there is a drug that might help with the strokes. A firm diagnosis...
My 5 month old was just hospitalized for a week and a half due to weight loss, lung problems, reflux aspiration, aparent inability to process proteins has to...
Grace is severly affected by the heat. Since her heat stroke a year ago, we have to be extremely carefull of this ever happening again, while allowing her to...
First of all that coach should not have a job working with kids, if he has that type of workout ethic. No child, ever, should be worked out until they vomit....
Becca, I've used info that I printed from the UMDF website to give to Sophie's therapists to help them understand the disorder. I was fortunate though that...
When I faced these same sorts of issues with some of Sophie's docs I went ahead and kept the follow-up appts with them but at the same time I had appts...
Hi Kristine, We live in Orange County, California. Most people are under the impression that Southern Cali is very hot, but if you live inland (like Chino) it...
Wow, I must of really been fired up, sorry about all of my typos on my first post. I am kind of going through an angry stage right now, I'm afraid. I swear I...
That wouldn't help with our situation. My kid is not a child, he's an adult. I actually pay a very hefty fee for this "torture", and there's nothing legally I...
I'm so sorry you're having so much trouble with Paris. Our five month old Mattie is having so many issues the same, only our problems are not compounded by...
My son's doctor won't be any help, he just told my kid to quit. My son is my child, but not A child. He's grown up. All my kids are. The only child at home is...
Oh, ok. I've never heard of The O.C., but I'll take your word for it. *Ü* I'd love to live near the ocean! We lived in coastal North Carolina for a
few years,...
Hi, Darla - I'm so glad that you have some answers, and especially that there is a med that may help! Take care, Kathy ... From: Darla Klein To: List Mito ...
Thanks that does make me feel better. I know as a nurse I can be a little demanding but I thought her and all the office staff have been great but when some...
Thank you all so much for your comments. Drs want him on CoQ10 and carnitor, b25 (whatever that is) and Lipoic Acid. Do these help with the intollerance to...
Welcome to the group... its an awesome group for info.... Melissa, Mom to Hailee (6), diagnosed with septo optic dysplasia, mitocondrial disorder, epilipsy,...
I am sorry to hear about your child's hospitalizations and health issues. I hope he has a quick recovery from the illness. Don't feel bad about the rant...
Several of my children as well as myself struggle with heat issues. We wilt quickly, become overheated, and start to show heat exhaustion symptoms besides the...
Welcome to the group. You will find many caring and helpful women and men in this group. The symptoms your child experiencing are very common amongst our...
Sorry it has taken me so long to get back to you. I have been running around from doc appointments and testing on Christina, going to Mayo, dealing with...
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