carnitine question

[Guest guest]

Just got a call from my youngest daughter's doc.Molly is as of yet

undiagnosed.Her GI doc ran the tests on my request and now doesn't

know what tomake of it. Her carnitine level is decreased. Is this

normal in all of mitochondrial disorders? Is this normal for other

people?

We are still working on tying our families problems together, and I

am just not sure where this leads us. She is relativley healthy. She

has some signs of dysautonomia (temp inst. red cheeks), and some

signs of hypoglycemia. She also has food senstivities (wheat,

peanut, milk and egg). All little things that don't necesarily tie

anything together. Developmentally she is right on track (or

advanced). She doesn't seem to have any of the strength issues

has.

Of course I am confused and concerned. Any help would be appreciated.

Dawn Myers

[Guest guest]

The first thing tested on Gracie, when mito was suspected, was Carnitine. It is rare to be primarily Carnitine deficient. Most all mito pts. are Carnitine deficient. It is extremely common with metabolic disorders. As far as her other issues, these are also very common with mito disorders. It is very reassuring that you say she is developing normally. Maybe she does have mito, just very mildly. Since my daughter, Grace, has been diagnosed it is highly suggestive that I also have mito. I have always had "weird" things, but never very serious. I am going to have my doctor run some bloodwork, just to know. But to reassure you, I am pretty healthy and currently on my 4th pregnancy. If you can carry 4 kids, and raise them, this is our 5th child to the family, you must be doing pretty good! Best of luck. Hopefully the rest of the testing is normal, its just one less worry.

[Guest guest]

The first thing tested on Gracie, when mito was suspected, was Carnitine. It is rare to be primarily Carnitine deficient. Most all mito pts. are Carnitine deficient. It is extremely common with metabolic disorders. As far as her other issues, these are also very common with mito disorders. It is very reassuring that you say she is developing normally. Maybe she does have mito, just very mildly. Since my daughter, Grace, has been diagnosed it is highly suggestive that I also have mito. I have always had "weird" things, but never very serious. I am going to have my doctor run some bloodwork, just to know. But to reassure you, I am pretty healthy and currently on my 4th pregnancy. If you can carry 4 kids, and raise them, this is our 5th child to the family, you must be doing pretty good! Best of luck. Hopefully the rest of the testing is normal, its just one less worry.

[Guest guest]

The first thing tested on Gracie, when mito was suspected, was Carnitine. It is rare to be primarily Carnitine deficient. Most all mito pts. are Carnitine deficient. It is extremely common with metabolic disorders. As far as her other issues, these are also very common with mito disorders. It is very reassuring that you say she is developing normally. Maybe she does have mito, just very mildly. Since my daughter, Grace, has been diagnosed it is highly suggestive that I also have mito. I have always had "weird" things, but never very serious. I am going to have my doctor run some bloodwork, just to know. But to reassure you, I am pretty healthy and currently on my 4th pregnancy. If you can carry 4 kids, and raise them, this is our 5th child to the family, you must be doing pretty good! Best of luck. Hopefully the rest of the testing is normal, its just one less worry.