Good Morning Everyone, We see Dr.Parikh for Mito,and whole bunch of doc's for Grace he suggested that we find a pediatric specialist for her. I talked to her...
My best friend in a pediatric home health nurse and she gave me an idea. I use the flat twin sheet to tie across the bottom of the bed rails as a bottom...
I think it is really difficult for us to give advice on this. As far as I know, the treatment really wouldn't change with a definitive diagnosis. I can...
I see Dr Lonzer in CCF in Willoughby Hills. She is phenomonal. Plus, all paperwork is right in computer and he has been healthier since I kept within the CCF...
Hi there, Dr. Natowitcz at Cleveland Clinic did not think it was necessary to test our son or me, since our daguther already was diagnosed through muscle...
We just faced the same question with our daughter Lauren. To biopsy or not. Our son has a Complex I defect and I too have presumed mito based on symptoms and...
Good luck with this long journey you have just begun. I hope you find this board as helpful as I have. In the moments when I just don't know what to do or...
Thank you Joni, I have found this board helpful. I am glad to have people here who know what it is like. Thank you I have been following Aaron's "clues" for...
Just wanted to thank everyone so much for all the thoughts, opinions and support. It really means a lot. It really seems like the general consensus from...
This is probably my first post to this group. I have sons with mitochondrial disease, seizures and autistic disorder. Most seizures are complex partial in...
MNGIE? They are now going to test Landon for that. Also going to test for MPV17 and DGUOK. I have found very little on these mutations. Thanks for reading!! ...
What is the MPV17 and the DGUOK? Jeremy was diagnosed with MNGIE, based on clinical symptoms and his thymadine Phosphorylase, they told me that was a huge...
Hi, The MPV17 and DGUOK are nuclear mutations they will be checking for. I found a bit of info but not in terms that I can understant and maybe it really does...
{sound of your chin's dropping} because I know we are all suprised...that this is normal. Nightmare process but I'll share those another moment. Too tired. ...
My daughter has been suspected of Mito myopathy...we are going to see Dr. Cohen on monday which I am soooo nervous..Her doc here at the MDA clinic diagnosed...
We are finally getting in to see Dr. Saneto on the 14th! I'm so glad we can bring Abigail to a docter experienced in mito. Just thought I'd share my good news!...
Hi Jeremy was diagnosed in 2004. He was 13 years old, I was told that it was between the 1st and second decade of life, Who knows, I have read and heard so...
I know that there are groups in which people sell/trade etc medical equipment, but are there any places in which people have things like strollers? Isaiah is...
In their section of criteria for multisystem disease they list "hematological" as another point in the criteria system for mitochondrial disease. Someone...
I am so happy for you!!!!!! I think you will like him. He is very nice, he can be a man of few words as he watches your child and you can always tell he is...
In a message dated 4/1/2008 9:04:33 P.M. Eastern Daylight Time, nicolejeansw@... writes: Someone pointed out that anemia is common with mito/metabolic ...
Thanks. My son has low hemoglobin and also abnormal shaped red blood cells. He also had something show in his RBC called "rouleaux" which I really have no idea...
... equipment, but are there any places in which people have things like strollers? Isaiah is just too big for his stroller and I can no longer pick him up...
Most of you may already know about this, but I wanted to share with any parents who may not know about using EMLA cream to numb your child's arm before lab...
No gracie not diluting results.... - it is for keeping body well nourished and thus easier to get blood flow out of a vein. Like a sponge is dripping wet...
Our local hospital has a topical spray that they have started using that numbs the skin before a stick. It was used on Sophie for the first time this past...
OK thanks I just thought that B/c fasting tests like the ones they did on Aaron were b/c they wanted to see what happens without food and drink. Gracie ... ...
Welcome Terry: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042181/ has a link to power point presentation taht might have some helpful info; or also poke around...
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