This is a bit convoluted, bear with me... :) My 3 year old son has a diagnosis of Complex 1 Deficiency (via muscle biopsy 18 months ago). He is mildly...
... Have you had a muscle biopsy? What urine test for Fabray's? They test the blood for alpha galactosidase A. You sound a lot like my son. He has extremely...
It is sad to say that I have mixed emotions regarding todays benefit. It is for another child in my small town of 4800 people who lives with mito. We have...
Theres a urine screening test for Fabry's now that detects Ceramide Trihexosidase (I think thats the spelling!) and mine came back positive every time they...
... No biopsies yet. We made the huge mistake of accepting the appointment with Parikh after waiting for over a year for an appointment with Cohen. He didn't...
Hi Guys, I have completed a buget for Miracles for Mito Kids. I just was blown away. $233,000. That is based on the info you gave me and est. about 50...
I think that how public or private a family is when dealing with a serious illness in one of it's family members is a very personal choice. You by no means...
I think this is an awesome idea. It is definitely the kind of thing that would pull at my heart strings. Not only that but maybe you could have a link for...
I would like to add that I have found with myself (my son gets his carnitine in the carniqgel) that the dosage also depends on if you are taking the liquid or...
sounds great to me let me know when you want to start that my daughter would love something like that too seeing her art on the internet/ebay Becca ... ...
Could the art work be turned into something like note cards or magnets instead of being framed? I know I would be more inclined to buy something with a...
FYI - on the Parent-2-Parent site, you have to click on message boards, then the shopping tab to get to their store. I think the stamps were done at...
Great idea. My kids would love to provide pictures. Could siblings (non-affected kids) also contribute drawings? If so, I have a son who is awesome at it...
I have had my share of similar symptoms and know that, yes, the symptoms can disappear. With me, they often come in spurts and at first are quite bad and then...
We will be going to Mayo (Rochester, MINN) from Tuesday to Thursday of next week (4th-6th) for developmental testing in Asenath and then again from Monday to...
We have been told that often Mito kids have wide set breasts and do see that in my girls as well as in myself (blush). I know there are other things that can...
We go to Mayo too and know that they do have other geneticists that can follow-up but they are much less Mito savvy and we are opting to go elsewhere too... ...
Sorry for the late reply but just getting some free time. I would definitely ask for a gastric emptying test (which is easy and non-invasive-you just drink or...
Hi, I think it's totally a personal choice. We all deal with this disease in the way that works best for us and our family. I tend to be fairly open about it...
AReckling@...
Apr 2, 2006 1:10 am
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Also, Zazzle.com does something similar. If you have a logo or pic or something you want to use they can put it on almost anything (t-shirts, bags, stamps)....
Ng-tubes are a pain at times but are ok UNTIL you get the permanent G-tube placed. Our docs (several) have all agreed that a NG-tube should only be used for...
We kept everything in to ourselves and finally after 14 yrs of doing this and realizing people were looking at us like we could "give them " this disease, we...
Both my girls use Carnitor daily and take 5 ml 2x daily (100 mg./ml) so that is basically 1000mg per day for both my two year old and my six year old. They...
Laura & all... My "knowledge" on Mayo Clinic is that Dr. Renaud (Ped Neurology)is handling some Metabolic issues-at least that's her background. And where...
I love all the input. It doesn't have to be just drawings. Anything that you guys want to come up with is fine with me. I will check out some of the sites...
I love this idea I know Kendall would love to participate. I just want you to know I think it is absolutely wonderful what you are doing!!!! God bless you I...
The color is green. There are a few items for sale on the UMDF site. The Delaware Valley chapter sells beaded bracelets, but maybe a different design could...
That is a huge goal for a budget! How many other people do you have working with you? The effort to collect and keep track of the money is going to be a big...
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