An update on Trish for y'all Anne ... send ... **************************************************** Hello Anne I have spoken with Trish daily and she extends...
Kate: I am glad that Staci is home and on the road to feeling better. Also I am glad that you have finally gotten a diagnosis. Love, Sharon mommy to Jake (5)...
We've had a couple of posts re: ketogenic diets...the last one outlining pretty much what we would have gone through, when Staci was still undiagnosed. The...
Jennifer's Dr. is talking about heart surgery now on March 4th and we want to be prepared to discuss alternatives like the prescription for the CoQ10gel. Where...
Hi Anne, I'm finally reading through the mito list and caught some of the vitamin C conversation. Being Kevin takes so many vitamins, let me know if I'm...
Hi, Thanks for adding us to the new listing. Things at our home have been extremely busy this month and I appreciate being updated. Thanks, Laura G....
Mary, I was under the assumption that you already have the diagnosis. Let me clarify my post. If you are seeking a diagnosis - without question - please...
Dear Friends, thanks for your concern and prayers, as ours have been with you. Earlier this week Staci was one of 3 Calif. mito kids on our lists who were in ...
Mary - I am in Rhode Island. Welcome to the list. Tell me where you are in CT and I might be able to direct you. If you live close to New York - Columbia...
Hi Karen, If a child has a hearing loss, they can have CAPD but there is really no way to distinguish what part of the problem is caused by the hearing loss...
WARNING: LONG POST! ... Mackenzie's hearing was also better than the average persons (according to the audiologist). Although, she is hypersensitive to...
Just wanted to let everyone know that Trish has been admitted to Mass General. She is worried because the doctors don't seem to know what mito is. She even...
Hi Karen, We were also told the same thing - you can not have an auditory processing problem and a hearing problem. In fact before they would even test...
Hi - for those of you interested in liquid CoQ10 I was given some information last week by Janice who runs Dr. Shoffner's office at Scottish Rite Children's...
Dear Anne, Loved your message about how people view your children! And no, I don't think you are living in a la la land. I too am sick of hearing how sorry ...
I am wondering if anyone has advice on giving my son (16-months old-Leigh's Disease) B1 through a g-tube. I usually crush it and give it to him in applesause...
Hi everyone - Jack is back home now, fresh from 5 days at Egleston and his first IVIG therapy. He did relatively well, no allergic reaction, but a bout of...
We spent a good part of the day in ER today and it was an extremely frustrating experience. It has made me vow that tomorrow I am having our pediatrician...
At least she's awake now--after a 24+hr. beautysleep. This is the 2nd episode--just like last month--ended up "Obtunded"; (fancy name for unconscious, sort...
Hi, I am cross posting this one to two lists because FAS has been referenced frequently on CAPD list as showing similar symptoms as what my daughter shows...
On a better day earlier this week, when we thought it was just a minor cold and ear infection that Staci had, I posted that we would bring Krispy Kreme donuts...
Linda wrote: "I told Kody on the way to school some families actually don't eat dessert for breakfast," They don't? Gee, I thought it was normal to eat...
Hi all: This is definitely worth checking into !!!!! I know that there is alot of studies being conducted on this right now and diabetics, pregnant, lactating,...
Hi, You guys in the North East United States......is there some sort of allergen outside that is prevelant right now? Is pollen coming out this soon? Is it...
Lori - Feb. is murder on my allergies/sinus! The dust & mold inside the house is usually rampant by Feb. (yes, I clean! but...) and the air in the house is dry...
Thanks for all the info on the Q-gel, I appreciate it. It sounds like they are super easy to deal with and the service is good and fast. thanks, Jeannine...
... Lori- Another idea along the same line is to make a choice book. I use one of the small photo albums (like the grandma ones). This allows you to change the...
I borrowed the following html from the Our-Kids List--I think it applies to all of us who are battling our child's, or our disease, syndrome, disability, etc....
Sorry if anyone misunderstood my last post. I didn't mean to tell anyone not to use both lists - I just meant to suggest that a question might be better put...
