Hi Jane My son does not have chest wall deformity none that we are aware of yet, however has been making very strange breathing sounds.which we are having...
We got a letter on Saturday that our Biochemical Geneticist, the one we just got in February as we are just learning of all the metabolic stuff, left the...
Lynn, My family is in the same boat. Four of my children have been patients of Dr. A. for over three years. All our docs are at duPont. For now I am going to...
Marie DiPietro
md8senuf@...
May 1, 2007 1:33 pm
72914
Wow Karen; amazing story. I will keep pressing for answers-feeding shouldn't be one of tose challenge areas unless *something* is happening. Any specific signs...
I have a pectus (the middle of my chest (sternum?) caves in remarkably) that has gotten worse as I grew.. I also have scoliosis but htey think its unrelated......
... We go to her primary today and I show him how her ... My kids both have pectus excavatum. That means their chest wall caves in. My son's being worked up...
Laura is pectus excavatum a sign of osteo?? Mine has progressively gotten worse over the years, but nobody has ever been concerned about it... Early age osteo...
Melody, Sorry to hear Natalie is back in the hospital. I can really emphathize with you as we just got out last night after 5 days. I am happy to hear they are...
Hello, I joined the group a while back but due to the limited access of internet dont get on much. My daughter Kaylee has mitochondrial myopathy. We are still...
only thing that really works for Rachel anymore is 3/4 of an adult enema. it usually takes one the next day too if she's gotten really bad. (cannot give them...
... Pectus excavatum is usually found at birth (or as a young person). Katie was five before we noticed. Thomas was a teen. They don't really do anything about...
Wow.. I know they did a marfans workup on me as a child (normal) because of my scoliosis, double joints, and heart/eye issues, but nobody has ever even given...
Same for us. We are also going to be looking. AJ had been seeing Dr.A for over two years. She was the best. Wonder where she's going? All of AJ's docs are...
would they condiser admitting her for D10 until her fever breaks at least....I'm guessing the seizure is a result of the body runing low on energy....dextrose...
I thought some degree of apnea (<20s?) was normal after a loud sigh? Rachel has strange breathing patterns sometimes...may breathe really fast then stop....
By the way happy 3rd birthday Sophie! I keep forgetting you're just 2 months older than Rachel. We wish you all the best. sending a hug from Rachel and me ...
sorry she's been struggling....we're all here for you...I don't have really any suggestions but you said: "NONE of her specialists want to sedate her because...
hi Meisha. my daughter almost 3 years alsp sleeps a min. of 16 hrs/24 hours. feel free to e-mail my personal account: sjkassis503@... jenna ... really...
... Central apnea is not normal in children. Apnea is when you stop breathing for a certain amount of time (often described as 10-20 sec). Central apnea...
You've come to the right place for support! I just want to say that my daughter, Abbey, is 7 this year & she still sleeps 12-14 hours at night & even naps on...
Hello Everyone I just wanted to let you know that there is a mito walk here in ontario on May 27th, all proceeds will go to the hosptial Sick Kids, in Toronto....
You may want to check out neurology at St.Christophers in Phila. They have several doctors familiar with Mitochondrial Disease. The Barnett Center there used...
please forgive me if I'm ignorant...really...but isn't significant oxygen desaturation supposed to occur before HR dropping? last night I watched Rachel 3...
... Bradycardia can cause desats. Has she had a sleep study when this has happened? A pulse ox may also show some delay in showing a change. It might not alarm...
Update, Talked to Polly at Dr Parikh's office and she said to put him on Miralax. I know a lot of the kids on this board take that. My question is how much do...
... Did they give you a script? If they did your insurance should pay. Even though it's over the counter, it is not OTC for kids. Katie is nine and weighs...
We have Leah going through the same thing, ( 4 years, complex 1 complex 1V leighs), she has always been tired and slept a lot but has been soooooooo much...
thanks for the note Christine! I knew the mito march was coming up soon, but havent checked Kirks site in a while so wasnt sure on the exact date... awsome...
My son Aidan will be 3 tomorrow and he weighs 23lbs and takes a 1/2 a capful of Miralax mixed in either 4oz. of water or juice. Not sure if the caps are the...
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