You can add Christian _www.caringbridge.org/visit/christianramirez_ (http://www.caringbridge.org/visit/christianramirez) **************Feeling the pinch at the...
Does anyone know this doctors & what have you heard? Kurenai Tanji Michio Hirano Please feel free to reply directly to my email and with the virus treat please...
Hi, Kelli - What a beautiful letter, and such beautiful pictures of Mary Elizabeth! She reminds me so much of my Emily (now 17!), and how much we treasure her...
Kelli - I can feel the love and joy from your letter. I am so happy for all of you.. Please wish Mary Elizabeth a very happy 16th Birthday.. Thanks so much for...
Becca has had no desire to eat at home for months now. She eats her cocoa rice cereal at school (2-3 bowls) and then eats her lunch, comes home and won't...
Becca, have you concidered what she is eating during the day is causing the problem? Our child gut STOPS with any form of rice regardless of how small the...
Hi everyone, Grace had some lab work done in regards to her growth, one of the tests came back abnormal(growth factor 1). We are going to see Dr. Rodgers at...
Sounds like a wonderful day! Sixteen is an awesome milestone and I am sure you must be thrilled and VERY emotional! I know I would be... I am already amazed...
Yeh for the boys! Enjoy your precious birthday! http://www.freewebs.com/growingupmitodisorderinfo/<http://www.freewebs.com/growingupmitodisorderinfo/> Darla...
Hello everyone, I think one of the best ways to really "feel better" about living with mitochondrial disease is to be armed with really good relevant knowledge...
I am about to apply for a grant that someone told me about. I don't know much about this grant and I don't know what to ask for, so I want to be broad and try...
Today was a rough day for the Laws family. We had Nathan's IEP and we had to make some serious choices. As with any parent's decision we struggled with them,...
If I had a grant I would get my son's swimming lessons paid for! They're super expensive but SOOOO worth it! Jonathan has become soooo strong since he...
Hi Eileen, How is Becca's overall functioning? Does she seem weak and fatigued or more or less at her normal energy level? Is she losing weight? If my child...
Hi Leah, This sounds like a wonderful opportunity. I have no idea about what to ask for or how such things even work! Sounds like you have some great ideas....
Happy Birthday - I know the feeling being told Clay would not walk or talk or see 4 - and he just turned 12. PROUD parents we are :) Party sounds amazing. hugs...
Kelli, I'm sure you don't know me. I don't say much, but read when I can. I remember Mary Elizabeth, partly because that is also my name. :-) You said >> I...
We were in the hospital this weekend for GI issues. We didn't have our regular GI, just the on call guy. I was asking questions about motility and if our...
My sense is that GI issues in mito are like any other organ system - they can be progressive. Can. No one knows exactly what your child in particular will do....
AReckling@...
Apr 2, 2009 12:05 pm
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Hi friends, A good friend of mine's 6yo daughter (non-mito) was just diagnosed with absence seizures. The neurologist put her on Zarontin for two years. I...
Thank you to everyone for your feedback regarding the l-carnitine. I am waiting for the docs office to call me back re: switching to 2 or 3 times a day. That...
Melanie, that is so neat that it doesn't wipe him out like regular PT. That is exactly what I am seeing - that a lot of normal activities/ therapies are making...
<<What grant are you applying for?>> It was one I got referred for in Texas, from PEO. I don't know if you have to be referred but I remember sending an app...
What was the exact name of the test? If it was IGF-1 or IGFBP3: http://www.magicfoundation.org/www This site has a link to insulin-like growth factor...
Here are the tests run and the results: Cortisol 9.4 - ug/dL Cortisol Reference Range: AM = 3.4-26.9, PM = 0.9-15.8 Ins. Like Grth Fact1 157 74-551 ng/mL ...
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