Guest guest Posted April 28, 2000 Report Share Posted April 28, 2000 Also for Barbara: I will be in Gaithersburg today. What area do you live in? I " m about 20 minutes from Montgomery Village. I live in County, about 10 miles north of Olney! Barbara wrote: > , > > I live in Gaithersburg. Corbin is 19 mths now. I also have a just 3 > yr old, Max. He is not known to be affected, but has some issues of his > own. > > I think we've had many posts about a crisis. For Corbin it was > respiratory arrest, dehydration and elevated Lactic acid and one known > time of elevated Pyruvate. They are supposed to be connected. If one > is high the other is also. He has had his glucose level be critically > low at least 2 times now. The first time was the worst. I though we > had lost him. He was only 3 days old and not strong enough to fight or > show me that something was wrong. I was devastated when the told me he > was severely dehydrated. I couldn't tell. He was still urinating? > He's been hospitalized 3 times for these type of crisis. Far less than > many of the children on this list, but scary none the less. > > We see Dr Rosenbaum at Children's Hospital in DC. He has been a > wonderful and very caring Dr. Other wise I have yet to find a > metabolic Dr. that I liked. They take one look at my son and say there > is no way the tests results were accurate and no way that my son could > have a metabolic or mitochondrial disorder. I get so mad just thinking > about it. > > How did you get into NIH. It is very near me, in Bethesda right? Did > your son have to qualify for this to be free? Tell me more! > > Corbin has services in our home now. Speech therapy and a special > education teacher. I don't know what the future might bring as far as > school is concerned. He seems to be doing so well right now that I > wonder if he will qualify for services after his next review. > > I look forward to talking more with you, > > Barbara > > ------------------------------------------------------------------------ > You set the price on thousands of products. Computers, electronics, > art, home appliances and more. Visit uBid today! > http://click./1/3026/1/_/368657/_/956796286/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
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