Noah update-completely confuzzled

[Guest guest]

OK—I think I might lose

it. Things are finally working at the doctor’s office

communication-wise…which is such a relief.

Today they got all his blood work

back including bile acids that were good…that is normal.

But his blood glucose (which was not

taken fasting) was low. It was 61, the normal range is 74-120. They

want to retest on Tuesday. What the heck? I know the pancreas is

involved here, but oh crap. Could we be talking hypoglycemia, or (oh

please no) diabetes?

Anyone with experience here? I

know I really KNOW nothing, but…OH CRAP!

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

....But his blood glucose (which was not taken fasting) was low. It

was 61, the normal range is 74-120. They want to retest on Tuesday.

-

I would not get upset and certainly lose no sleep over the blood

glucose level. Ranges are purely ranges and his was not that far out

of " the normal " . Diabetes is high blood sugar in response to little

or no insulin production. Diabetics who get hypoglycemic do so in

response to the medication. For non-diabetics who get low blood

sugar, they may need to eat more frequently or modify what they eat,

but it is not difficult to deal with. I learned as a child that I

needed to eat more often than 3 times a day or I would end up with a

migraine and feeling hypoglycemic (shaky, lightheaded, etc). Noah may

be sensitive, as I recall you mentioning his headaches in the

afternoon, and gatorade improving his symptoms.

Joanne

(, Ca)

[Guest guest]

Joanne,

You are right. Keeping him hydrated

with Gatorade has been a cure-all for his shakes and headaches. So in

your mind are you thinking we can just keep him afloat by keeping some snacks on

him or Gatorade? That would be a great fix.

I just can’t deal with more

complications with him. He has felt like crap for too long…shown

symptoms of HE…major pruritus…I do want those fixed too though…I

don’t want to lose sight of that in my joy for the no diabetes end of

things. Because my fear is that they will quit searching for what is

causing his symptoms. This is exhausting…rubbing his back every 20

minutes at night. I adore this child (and all my others too…so that

was kind of a duh statement), but I just can’t deal with him going

through this. He walks around pale, with dark circles around his eyes,

much like a zombie. Once and a while his old personality pops out with a

zinger that he used to always have flying out his mouth that tells me he is

still in there.

Thanks for answering me as I AM feeling

very much alone right now.

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

wrote:

>

> You are right. Keeping him hydrated with Gatorade has been a cure-all

> for his shakes and headaches. So in your mind are you thinking we can

> just keep him afloat by keeping some snacks on him or Gatorade? That

> would be a great fix.

, I agree with Joanne. And, heaven knows, it's an easy enough

thing to try. :-)

For most of my life, my fasting blood sugar stayed between 58 and 70.

Always below normal, but typical for me. Trouble was that if something

happened to drop my sugar, I didn't have far to go before crashing. We

learned that eating something with sugar (like Gatorade or candy) would

pull me back up fast, but it would then also drop me right back down

within an hour or two. What I do is eat snacks like peanut butter

crackers or an apple with peanut butter (YUM!!!). If I feel like I'm

suddenly about to crash, I'll eat something with sugar to jack me up

quickly and immediately stabilize it with protein (cheese, tuna, peanut

butter, hard boiled egg, etc.).

Hang in there, girl! It's tough but so are you. God always gives

strength to handle whatever comes.

Hugs,

Carolyn B. in SC

[Guest guest]

, My itching was always worst at night when I was in bed. I remember telling my husband that it felt like someone had put itching powder in my bed. It was awful. I just couldn't get to sleep and when I did I always woke up again very itchy. Then one night it all of a sudden didn't bother me. I tried to figure out what was different and had discovered that my housekeepers had opened up the new package of sheets my mom had bought me (100% cotton and some really high thread count), washed them but without fabric softener and had put them on the bed. Well I tried a variety of different combinations and discovered that I needed these softer sheets and no fabric softner. I also started noticing a problem during the day when I wore anything other than cotton. Hope this helps. Pat (CA)

wrote: Joanne, You are right. Keeping him hydrated with Gatorade has been a cure-all for his shakes and headaches. So in your mind are you thinking we can just keep him afloat by keeping some snacks on him or

Gatorade? That would be a great fix. I just can’t deal with more complications with him. He has felt like crap for too long…shown symptoms of HE…major pruritus…I do want those fixed too though…I don’t want to lose sight of that in my joy for the no diabetes end of things. Because my fear is that they will quit searching for what is causing his symptoms. This is exhausting…rubbing his back every 20 minutes at night. I adore this child (and all my others too…so that was kind of a duh statement), but I just can’t deal with him going through this. He walks around pale, with dark circles around his eyes, much like a zombie. Once and a while his old personality pops out with a zinger that he used to always have flying out his mouth that tells me he is still in there. Thanks for answering me as I AM feeling very much alone right now. Mom of Zoe (13) super soccer player; Noah (9) UC, PSC, enthesopathy and osteopenia and a great soccer and basketball player and; Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less) __________________________________________________