Hi Jennifer, I'd be honored if you used the essay. It is a good feeling to be able to write what I experience and know that it resonates and maybe helps ...
Yippee! Just got my book in the mail from Amazon! Can't wait to read it and pass it on! I'm going to wave it in the faces of the high school science...
Hi, Whitney - I am an "old" member of the mito list . . . mostly just read now, but I noticed your post about being denied services at transition from EI to ...
Ken, Glad to hear Rhys is doing well. Hope your other children are too. Hope things are the best they can possibly be for you in life. Hugs, Marie ... From:...
Marie Di Pietro
md8senuf@...
May 1, 2006 12:44 pm
61183
Zach has been getting good nose bleeds i assume its cause his nose is sensitive now due to the canules in his nose. I am wondering what you do to prevent that...
We may not know when god wants any of our children back healthy or sick. I can not even cmpare to what you're going through because zach has a different dx...
Sarah, How do you have the Cannula on him? For Will we actually have the cannula all the way around his head in stead of just looped around his ears and that...
Sarah are you using a humidifier along with the O2? His nose may be bleeding because it is dry. Most of the concentrators have a place to hold a Water bottle ...
Hi Sarah, The only tape Kristen tolerates is Transderm. It is expensive but worth the cost. To reduce nosebleeds we add humidity to the system. It doesn't...
Yeah, I'm not sure about the no 504 for preschoolers. If this is the case, I think it needs to change. As I understand it, Thomas will not have an IEP because...
Yeah, I'm not sure about the no 504 for preschoolers. If this is the case, I think it needs to change. As I understand it, Thomas will not have an IEP because...
I totally agree with you. It makes no sense at all. Plus, I think a therapist can see the beginnings of decline/regression a lot sooner than the average...
Hello, First off, I am so sorry to hear of your daughters passing. I can't begin to imagine the pain you must feel. I am in the middle of being diagnosed...
Dear Ken, I remember you from a long time ago... So sorry things have been so crazy. So glad, though, that Rhys is doing well. Seth is 14, too, and is doing...
... change. As I understand it, Thomas will not have an IEP because his medical condition does not seem to effect his learning (based on his EI evaluations)...
I just wanted to say that I'm so sorry you and Haley are going through this and my thoughts are with you. I hope she improves. Loved the pictures on your CB...
... to the canules in his nose. I am wondering what you do to prevent that ? also every tape we try to hold the canules on he eventually develops an allergic...
I am so thankful to have found support-finally. My two daughters(26 months and 4 months) are being tested for mitochondrial diseases. Lab work for my younger...
this is my first post, my daughter sounds very similar and we are currently waiting confirmation of diagnosis for both of our daughters. my husband is deployed...
... Hi everyone we are from Grimsby,Ontario, Canuckland.Our 11 year old daughter was recently diagnosed with Mito but we don't know yet which complex.She is...
My granddaughter, Brittani, age 10, has COX deficiency, Complex IV. She had scoliosis surgery back in January. She has not been the same since she came home...
Hey. I live in Brunswick, Georgia. Halfway between Savannah, GA and Jacksonville, FL ... From: dawn pische To: Mito@yahoogroups.com Sent: Tuesday, April 25,...
We are the parents of 11 yr old Christina,newly diagnosed with Mito.Complex unidentified but she has petit mals,legally blind,learning disability,memory...
... We just had our 11 yr old daughter Christina diagnosed with Mito,complex unknown,waiting for more testing!!We are from Grimsby Ontario Canada and are new...
Hi everyone,we are new to the site and the disease.Our 11 year old daughter Christina is newly diagnosed with Mito but we don't know which complex yet.She has...
Darla, They are just beautiful, you are very blessed. Hugs Wanda mum to Connor and Brydie ... _________________________________________________________________...
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