Re: frustrated, need advice

[Guest guest]

First of all, I don't think anyone's problems here are insignificant. I really can't help you too much as far as labs go, sorry. The only really good at home test for hypoglycemia is watching her during the night. If she is sleeping during the night, no nightly feeds, etc., usually people with hypoglycemia will sweat a lot. My daughters doctors rarely check her bloodsugar, we know it is low. I know this because if she does not eat every hour or so, she gets very irritable and usually gets flushed. During the night, when we don't use cornstarch to raise her bloodsugar, she will sleep very restless and soak her bed with sweat. I would not change my appointment either. What's the worst (or best in this case) is for them to say she does not have mito? At least you will know. As far as the FOD's are concerned some are not specific. My daughter is considered to have a FOD along with the mito, neither of them are specific or have a "name." She is just unique. Although now we are awaiting a genetics report because of a new speculation of LCHAD.

[Guest guest]

First of all, I don't think anyone's problems here are insignificant. I really can't help you too much as far as labs go, sorry. The only really good at home test for hypoglycemia is watching her during the night. If she is sleeping during the night, no nightly feeds, etc., usually people with hypoglycemia will sweat a lot. My daughters doctors rarely check her bloodsugar, we know it is low. I know this because if she does not eat every hour or so, she gets very irritable and usually gets flushed. During the night, when we don't use cornstarch to raise her bloodsugar, she will sleep very restless and soak her bed with sweat. I would not change my appointment either. What's the worst (or best in this case) is for them to say she does not have mito? At least you will know. As far as the FOD's are concerned some are not specific. My daughter is considered to have a FOD along with the mito, neither of them are specific or have a "name." She is just unique. Although now we are awaiting a genetics report because of a new speculation of LCHAD.

[Guest guest]

Tina,

First of all, thanks for the birthday card for !That was

really sweet! Secondly you've learned the hard way- always get the

records from the hospital. I always get a hard copy of every test

they do, just so I know. If you ask nicely (I learned the hard way

too) they usually cooperate. Esp. if you say that she has numerous

specialists that will need copies.They would rather you do it then

them have to be bothered later.

Next, Bloodsugars. I have insulin resistant hypoglycemia. I can be

40 two hrs after eating and the go back up. I don't check it I just

know. I feel horrible when it is low, but I do not die or go into a

coma, so I can only assume it goes back up on its own. Yes, d5 has

sugar. If this was started when you got the 30, then they drew the

other sample, it would be different. If the glucometer wasn't an

accurate test, they wouldn't continue to use it right? children with

mito can have normal blood sugars but still be symptomatic. They

cannot utilize the sugar as easily as others.

It is all very complicated and you learn as you go. It is always

better to be safe then sorry. Never apologize for asking. I said it

before, this groups knowledge has saved on more than one

occasion.

We have been on this road for 4 yrs. and still don't know for

sure what has or why. The treatment for Mito has helped. We

continue to look and test to figure it out. They don't know if we

will ever know. No one anyone anywhere has ever seen what she has-

The Myers disorder???

What great photos of your family at that site you sent. I loved

them >it is very nice to put a face with the names, especially since

were related!

Keep the appt!!!!

Dawn