Re: update on P./ketones/??s for everyone

June 15, 2000

Hi Everyone,

I have been keeping Natasha out of school all week. We are having a heat

wave and on Monday the school demonstrated to me that they are not ready to

take care of her properly. She was outside beat red playing in over 90

degree weather! Arggggggg.

Mark,, our hearts go out to you and your family. We have had 4

hospitalizations in 10 months... One critical. It is very hard. Give

a big hug from Natasha.

I am so glad she is home... Hope you all can get some rest now.

As far as Ketones go,,, I have been told by a few nurses that ketones in the

blood and ketones in the urine are different. Ketones in the blood happen

much earlier in the process than that of urine ketones. So I was told that

it is not a accurate measurement of her health. We have a glucometer that

tests both blood sugar and blood ketones,,, but thank god for now we do not

have to do it,,,, the last time she was sick she showed no signs of

hypoglacimia,,, only large ketones in her blood.

I have ketostix and have tested her once in the morning and it was negative.

For us,,,we can tell how she is by " the Look " that she gets and if she vomits

or has diarea,, she falls apart really quick and it is quite obvious. So for

us,,, I am not going to make myself crazy, unless the doctors tell me too.lol

I tried once to test her blood sugar... she is very strong and can be almost

totally uncontrolable if she wishes... and she wouldnt allow us to test her.

Then when we went to the hospital... she was so compliant... I couldnt figure

out if it is us or if she was so ill that she didnt have fight left in her.

Did I tell you guys that I recieved a call from one of the Endocrinologists?

So far Natasha's repeat IGF1 came back,, it is 68,,,, that is up from 52 a

bit over a year ago.. Normal really. Also, and I will have our blood

taken for the UPD when we go for her Genetic appt.

Wednesday we go to her Geneticist and hopefully we will get a we bit closer

to diagnosis.

Anyone out there have a really hard time getting the RSS diagnosis? Are

there any folks on the list who's child doesnt present in a classic way but

is still classified as RSS and if so,, what finnally clinched it for the

doctors?

Has anyone applied or recieving Social Security bennifits for there child?

What about Respite? So many questions.. Sorry...

Nervous Mother,

Ann xoxoxoxo

Mom to Natasha,,,28 pounds 35.3 inches,, IUGR,,, Poss RSS?? Metabolic

disorder??

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