Re: Jeanie - and (H) and Jodi Z and whoever <grin>

[Guest guest]

Jodi - thanks for the info. You know what is interesting - Ian has

always been the opposite! LOL He usually has ketones after his

blood sugar drops. I check him periodically and every time he has

ketones - his blood sugar is low - but never before. Very strange.

Maybe I'm just not timing it right - which is possible. LOL But, I

know that when he was in the hospital the first time - he actually

started spilling ketones after we had been admitted and not before.

The second time we were in - he was spilling ketones prior to being

admitted - but, by then his blood sugar had already dropped and it's

very possible that he was spilling them leading up to his illness -

I had not checked previous to the admission. I usually check Ian's

ketones once a week and was told to check for them especially during

illnesses - of which I always do. But, with all of Ian's hypo

issues - I check his b/s every morning - and of late - several times

a day. We had a problem with his pump last night and he didn't get

continuous feeds for the 8 hours he was supposed to get - I had to

do a bolus at 10 pm and then we were able to start the continuous

feeds starting at 2pm. He awoke this morning with b/s of 76 - and I

know they were probably dropping because his behavior was telling me

so. It's a bit of a dissapointment because this tells me that

although our new endo does not want him off the NG feeds - it's

obvious Ian would not be able to handle it. It does reconfirm the

need for a G-tube however in that he needs something continuously

overnight. I'm now documenting everything. If his b/s drops below

60 - I'm to have his blood drawn for certain gh tests and other

tests. So, Jeanie - have I given you TOO much info? LOL

- H

>

> Actually, the spilling of ketones usually happens before blood

sugar

> drops. But I don't know if a child who has low blood sugar

> necessarily has large/moderate ketones.

>

> The presence of ketones happens on the way to dropping blood

sugars

> in a lot of kids/people. If left unchecked, then keto-acidosis

can

> develop which means the body chemistry is out of whack. The child

> can then start vomiting and not be able to stop. For example, a

few

> years ago I had a stomach virus. A really bad one. I could not

> stop vomiting, I was weak and could barely talk. I checked my own

> ketones and knew I was in trouble. I whispered to my husband that

I

> had to go to the ER, but I was too weak and sick to even get to

the

> stairs. He had to call an ambulance. The doctor explained that I

> was in keto-acidosis and would not have stopped vomiting and would

> have eventually lost consciousness if I had not gone in. I was

able

> to be rehydrated via IV for a number of hours, went home and then

> was tired but fine.

>

> Max, on the other hand, will spill ketones when he cannot eat and

> then the vomiting starts. He follows the same course as I did,

but

> it takes him days, not hours, to recover. That is more typical of

> our RSS kids. But he has had large ketones, been acidotic and not

> had low blood sugars. I do not understand the chemistry, or if it

> was explained to me, I don't remember it.

>

> Now, if you suspect low blood sugars, you should test for them.

Do

> NOT rely solely on ketones. I don't know if checked Ian

for

> ketones when his blood sugar has been low, but if she did, then

she

> can tell us if there was a connection. But in the practice of

good

> medical data collection, each test should be done as a separate

> entity: one for ketones and one for blood sugar. I'll bet

anything

> that after a time you will see a pattern.

>

> Jodi Z

>

[Guest guest]

LOL. Not at all! I am so glad for these posts! It just makes me mad that I

feel that I'm more informed than any of the professionals that are seeing

Brockton. I feel like I should give all of his Dr.s this website addy so they

can see what this is all about! I can't begin to explain all of this stuff to

them! LOL

advocate22003 wrote: Jodi - thanks for the info. You

know what is interesting - Ian has

always been the opposite! LOL He usually has ketones after his

blood sugar drops. I check him periodically and every time he has

ketones - his blood sugar is low - but never before. Very strange.

Maybe I'm just not timing it right - which is possible. LOL But, I

know that when he was in the hospital the first time - he actually

started spilling ketones after we had been admitted and not before.

The second time we were in - he was spilling ketones prior to being

admitted - but, by then his blood sugar had already dropped and it's

very possible that he was spilling them leading up to his illness -

I had not checked previous to the admission. I usually check Ian's

ketones once a week and was told to check for them especially during

illnesses - of which I always do. But, with all of Ian's hypo

issues - I check his b/s every morning - and of late - several times

a day. We had a problem with his pump last night and he didn't get

continuous feeds for the 8 hours he was supposed to get - I had to

do a bolus at 10 pm and then we were able to start the continuous

feeds starting at 2pm. He awoke this morning with b/s of 76 - and I

know they were probably dropping because his behavior was telling me

so. It's a bit of a dissapointment because this tells me that

although our new endo does not want him off the NG feeds - it's

obvious Ian would not be able to handle it. It does reconfirm the

need for a G-tube however in that he needs something continuously

overnight. I'm now documenting everything. If his b/s drops below

60 - I'm to have his blood drawn for certain gh tests and other

tests. So, Jeanie - have I given you TOO much info? LOL

- H

>

> Actually, the spilling of ketones usually happens before blood

sugar

> drops. But I don't know if a child who has low blood sugar

> necessarily has large/moderate ketones.

>

> The presence of ketones happens on the way to dropping blood

sugars

> in a lot of kids/people. If left unchecked, then keto-acidosis

can

> develop which means the body chemistry is out of whack. The child

> can then start vomiting and not be able to stop. For example, a

few

> years ago I had a stomach virus. A really bad one. I could not

> stop vomiting, I was weak and could barely talk. I checked my own

> ketones and knew I was in trouble. I whispered to my husband that

I

> had to go to the ER, but I was too weak and sick to even get to

the

> stairs. He had to call an ambulance. The doctor explained that I

> was in keto-acidosis and would not have stopped vomiting and would

> have eventually lost consciousness if I had not gone in. I was

able

> to be rehydrated via IV for a number of hours, went home and then

> was tired but fine.

>

> Max, on the other hand, will spill ketones when he cannot eat and

> then the vomiting starts. He follows the same course as I did,

but

> it takes him days, not hours, to recover. That is more typical of

> our RSS kids. But he has had large ketones, been acidotic and not

> had low blood sugars. I do not understand the chemistry, or if it

> was explained to me, I don't remember it.

>

> Now, if you suspect low blood sugars, you should test for them.

Do

> NOT rely solely on ketones. I don't know if checked Ian

for

> ketones when his blood sugar has been low, but if she did, then

she

> can tell us if there was a connection. But in the practice of

good

> medical data collection, each test should be done as a separate

> entity: one for ketones and one for blood sugar. I'll bet

anything

> that after a time you will see a pattern.

>

> Jodi Z

>

[Guest guest]

Jeanie,

Are you a member of MAGIC? If so, you can request copies of the

presentations from last year's convention to give to your doctor.

(I'm acutally not sure if you can request them or if your doctor has

to, but they are available.) Also, Jenn Salem is working on an

RSS/SGA Guidebook that will be available to doctors for just the

reason you are giving. Parents won't have to tote around reams of

pages printed from the listserve because the info will all be in one,

comprehensive guidebook!

Meanwhile, welcome to the club. More of us have educated our doctors

than you can imagine. It's really frustrating in the beginning, but

with a good relationship, you can learn to work together. We are

lucky with Max's pediatrician. I tell her what we need and she just

orders it. But it was not that easy until I educated myself and

learned the ropes - and how to speak up with knowledge and not anger.

Jodi Z

[Guest guest]

Hey Jeanie ... I think we're all in that boat and have to be for our

kids! My ped told me that I knew too much and I've only just begun!

Dawna

Matt 13, 11, 8 and Noah 3 RSS

> >

> > Actually, the spilling of ketones usually happens before blood

> sugar

> > drops. But I don't know if a child who has low blood sugar

> > necessarily has large/moderate ketones.

> >

> > The presence of ketones happens on the way to dropping blood

> sugars

> > in a lot of kids/people. If left unchecked, then keto-acidosis

> can

> > develop which means the body chemistry is out of whack. The

child

> > can then start vomiting and not be able to stop. For example, a

> few

> > years ago I had a stomach virus. A really bad one. I could not

> > stop vomiting, I was weak and could barely talk. I checked my

own

> > ketones and knew I was in trouble. I whispered to my husband

that

> I

> > had to go to the ER, but I was too weak and sick to even get to

> the

> > stairs. He had to call an ambulance. The doctor explained that

I

> > was in keto-acidosis and would not have stopped vomiting and

would

> > have eventually lost consciousness if I had not gone in. I was

> able

> > to be rehydrated via IV for a number of hours, went home and then

> > was tired but fine.

> >

> > Max, on the other hand, will spill ketones when he cannot eat and

> > then the vomiting starts. He follows the same course as I did,

> but

> > it takes him days, not hours, to recover. That is more typical

of

> > our RSS kids. But he has had large ketones, been acidotic and

not

> > had low blood sugars. I do not understand the chemistry, or if

it

> > was explained to me, I don't remember it.

> >

> > Now, if you suspect low blood sugars, you should test for them.

> Do

> > NOT rely solely on ketones. I don't know if checked Ian

> for

> > ketones when his blood sugar has been low, but if she did, then

> she

> > can tell us if there was a connection. But in the practice of

> good

> > medical data collection, each test should be done as a separate

> > entity: one for ketones and one for blood sugar. I'll bet

> anything

> > that after a time you will see a pattern.

> >

> > Jodi Z

> >

>

>

>

>

>

>

>

[Guest guest]

Can't wait for that guidebook! Poor Jenn working so hard! She's

worth her weight in gold for that one!

Dawna

>

> Jeanie,

>

> Are you a member of MAGIC? If so, you can request copies of the

> presentations from last year's convention to give to your doctor.

> (I'm acutally not sure if you can request them or if your doctor

has

> to, but they are available.) Also, Jenn Salem is working on an

> RSS/SGA Guidebook that will be available to doctors for just the

> reason you are giving. Parents won't have to tote around reams of

> pages printed from the listserve because the info will all be in

one,

> comprehensive guidebook!

>

> Meanwhile, welcome to the club. More of us have educated our

doctors

> than you can imagine. It's really frustrating in the beginning,

but

> with a good relationship, you can learn to work together. We are

> lucky with Max's pediatrician. I tell her what we need and she

just

> orders it. But it was not that easy until I educated myself and

> learned the ropes - and how to speak up with knowledge and not

anger.

>

> Jodi Z

>

[Guest guest]

No. I'm not a member. What do I have to do to become a member? I think my

mother would feel better if she joined the grandparents group. It would give

her something to do with her time and link her to other people her age that are

going through this with thier children/grandchildren.

Jodi Zwain wrote: Jeanie,

Are you a member of MAGIC? If so, you can request copies of the

presentations from last year's convention to give to your doctor.

(I'm acutally not sure if you can request them or if your doctor has

to, but they are available.) Also, Jenn Salem is working on an

RSS/SGA Guidebook that will be available to doctors for just the

reason you are giving. Parents won't have to tote around reams of

pages printed from the listserve because the info will all be in one,

comprehensive guidebook!

Meanwhile, welcome to the club. More of us have educated our doctors

than you can imagine. It's really frustrating in the beginning, but

with a good relationship, you can learn to work together. We are

lucky with Max's pediatrician. I tell her what we need and she just

orders it. But it was not that easy until I educated myself and

learned the ropes - and how to speak up with knowledge and not anger.

Jodi Z

[Guest guest]

To join MAGIC, go to www.magicfoundation.org or call 1-800-3magic3. I

think the membership is $35/year.

Jodi Z