Re: sugars,ketones,and xrays?

[Guest guest]

Hi Reah. Honestly. That's a decision that you and your physician

should make. However, although Ian is only 2.5 and he

never " exhibited " blood sugar issues prior to what I'm dealing with

now - I wish I would have checked him earlier - because, maybe some

of the symptoms he had (of which seemed " normal " to me then) may

have actually been blood sugar issues. You can't second guess

yourself through all this - which is why I'm moving forward and

taking everything as it is currently. You ask great questions

Reah. You are doing a great job. You should definately pat

yourself on the back.

Best of luck to you.

- H

>

> Hi All,

> I had a few questions. No one has ever mentioned to me that

I should ever take Chloe's sugars or check for ketones and I didn't

know I should be getting her annual xrays of her spine. This group

makes me realize just how much I don't know about my daughters

condition. When should I do this? Only when she's sick? She never

has been sick so could that be why this has never came up? I just

don't want to feel like I can't trust our doctors. I am going to

make an appt. to see Dr. H. Do you think she would see Chloe that

once and then maybe work with our pen endo in ga.? I'm working on

getting her ped endo to write a letter of medical neccessity to

peachcare in hopes that they will pay for this visit. Who would I

bring Chloe to for Xrays and should I start doing that now?Thanks

again for everyones continued support and help as I start down the

path of what is RSS.

> In faith,

> Reah and Chloe:)

>

>

> ---------------------------------

> Yahoo! FareChase - Search multiple travel sites in one click.

>

>

[Guest guest]

I'm also still a bit confused about the whole sugar check. From what I've read

about RSS, it's the body's small amount of body fat that contributes to their

inability to to keep their blood sugars stable. As the fat is where the sugars

are stored. Is this right everyone? When Dasia had the flu I called our Dr.'s

office, and asked about that, they didn't seem too concerned, (this could be

their lack of RSS knowledge though). She said the kids will act different, not

themselves, that their eyes will look different, the child will seem vacant.

Someone please add to this. Does Dr. H recommend regular sugar checks for every

child who doesn't get sick often, or have issues with maintaining body fat? I

read they do hand x-rays to check bone age when they start growth hormone, and

once a year after that. But I was also wondering if there is a standard age when

the kids should get their first spinal x-ray to check for scoliosis. I just

found out about Dasia's diagnosis in Aug. Reah, so we'll

learn together! From what I've been told about the ketones, when the kids

aren't eating, their body uses up fat stores for energy, traces of ketones will

show this is happening, and if these amounts are too high, the child should be

on IV to flush out the ketones. This is all still new info for me, so if I'm

ever wrong someone please get us the right info.

REAH MCNEESE wrote:

Hi All,

I had a few questions. No one has ever mentioned to me that I should ever

take Chloe's sugars or check for ketones and I didn't know I should be getting

her annual xrays of her spine. This group makes me realize just how much I don't

know about my daughters condition. When should I do this? Only when she's sick?

She never has been sick so could that be why this has never came up? I just

don't want to feel like I can't trust our doctors. I am going to make an appt.

to see Dr. H. Do you think she would see Chloe that once and then maybe work

with our pen endo in ga.? I'm working on getting her ped endo to write a letter

of medical neccessity to peachcare in hopes that they will pay for this visit.

Who would I bring Chloe to for Xrays and should I start doing that now?Thanks

again for everyones continued support and help as I start down the path of what

is RSS.

In faith,

Reah and Chloe:)

---------------------------------

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Hi H,

Your position seems to show that we all need to start checking. Does the

device you use need to be prescribed? I think it would be wise for all of us to

at least have one on hand. Does this cause damage to our kids, if they get low

bs frequently? And do you just get sugar in them when this happens? Does this

have anything to do with needing insulin or some form of maintenance? I'm not at

all familiar with any diabetes or blood sugar issues. Thanks!

advocate22003 wrote:

Hi Reah. Honestly. That's a decision that you and your physician

should make. However, although Ian is only 2.5 and he

never " exhibited " blood sugar issues prior to what I'm dealing with

now - I wish I would have checked him earlier - because, maybe some

of the symptoms he had (of which seemed " normal " to me then) may

have actually been blood sugar issues. You can't second guess

yourself through all this - which is why I'm moving forward and

taking everything as it is currently. You ask great questions

Reah. You are doing a great job. You should definately pat

yourself on the back.

Best of luck to you.

- H

>

> Hi All,

> I had a few questions. No one has ever mentioned to me that

I should ever take Chloe's sugars or check for ketones and I didn't

know I should be getting her annual xrays of her spine. This group

makes me realize just how much I don't know about my daughters

condition. When should I do this? Only when she's sick? She never

has been sick so could that be why this has never came up? I just

don't want to feel like I can't trust our doctors. I am going to

make an appt. to see Dr. H. Do you think she would see Chloe that

once and then maybe work with our pen endo in ga.? I'm working on

getting her ped endo to write a letter of medical neccessity to

peachcare in hopes that they will pay for this visit. Who would I

bring Chloe to for Xrays and should I start doing that now?Thanks

again for everyones continued support and help as I start down the

path of what is RSS.

> In faith,

> Reah and Chloe:)

>

>

> ---------------------------------

> Yahoo! FareChase - Search multiple travel sites in one click.

>

>

[Guest guest]

Chrissy - Jodi (es) - will you please help explain? Being new at

this myself - I'm not sure I would be able to explain things

properly to and I don't want to confuse her! Thanks!

- H

> Hi All,

> I had a few questions. No one has ever mentioned to me that

I should ever take Chloe's sugars or check for ketones and I didn't

know I should be getting her annual xrays of her spine. This group

makes me realize just how much I don't know about my daughters

condition. When should I do this? Only when she's sick? She never

has been sick so could that be why this has never came up? I just

don't want to feel like I can't trust our doctors. I am going to

make an appt. to see Dr. H. Do you think she would see Chloe that

once and then maybe work with our pen endo in ga.? I'm working on

getting her ped endo to write a letter of medical neccessity to

peachcare in hopes that they will pay for this visit. Who would I

bring Chloe to for Xrays and should I start doing that now?Thanks

again for everyones continued support and help as I start down the

path of what is RSS.

> In faith,

> Reah and Chloe:)

>

>

> ---------------------------------

> Yahoo! FareChase - Search multiple travel sites in one click.

>

>

[Guest guest]

- I can answer some of these questions. No, a blood glucose

monitor that is normally used for diabetes is what we use and it's

available at a pharmacy without a prescription. They are pretty

expensive though (mine was about $70 and that didn't include all the

lancets or test strips).

YES - having consistently low blood sugars does complicate our

children's metabolic systems.

Oh gosh - I'm not sure if I can answer all your questions! LOL I

would love to try.

Can we have an expert help please? <grin>

- H

> >

> > Hi All,

> > I had a few questions. No one has ever mentioned to me

that

> I should ever take Chloe's sugars or check for ketones and I

didn't

> know I should be getting her annual xrays of her spine. This group

> makes me realize just how much I don't know about my daughters

> condition. When should I do this? Only when she's sick? She never

> has been sick so could that be why this has never came up? I just

> don't want to feel like I can't trust our doctors. I am going to

> make an appt. to see Dr. H. Do you think she would see Chloe that

> once and then maybe work with our pen endo in ga.? I'm working on

> getting her ped endo to write a letter of medical neccessity to

> peachcare in hopes that they will pay for this visit. Who would I

> bring Chloe to for Xrays and should I start doing that now?Thanks

> again for everyones continued support and help as I start down the

> path of what is RSS.

> > In faith,

> > Reah and Chloe:)

> >

> >

> > ---------------------------------

> > Yahoo! FareChase - Search multiple travel sites in one click.

> >

> >

[Guest guest]

and H,

I'm no expert, by far, but this is how I understand things.

All RSS parents should invest in ketosticks, and periodically check their

child, (especially when they're sick) first thing in the morning, for

ketones. The output of ketones precipitates a drop in BS. A trace of ketones

is something to keep an eye on, moderate to high ketones is something to

worry about.

Anyone can buy a glucometer (blood sugar tester) at any pharmacy, however IF

you can get a Dr to prescribe one, your insurance might pick up the cost, or

at least the cost of the lancets and test strips. The glucometer ISN'T the

most expensive part, the test strips are!!

The main problem with low blood sugar is that blood glucose is the ONLY food

the brain can use. It's been suggested that frequent, or seriously low

episodes of BS, can cause brain damage, and that some learning disabilities

might be caused by this.

When 's BS goes below 70 we use glucose gel, squirted into his cheek

pouch, to bring it up to a more normal level. If you don't have glucose gel,

gel icing can be used, although it isn't as effective. If your child has a

g-tube, we've resorted to Nestle Quik Strawberry syrup mixed with a small

amount of water, followed by a flush of the tube.

Insulin is used to bring high BS down. You would not use it in the case of a

hypoglycemic episode. You also have to be careful about allowing it's use in

kids like or Maddy, because they have a tendency to rebound after a

hypoglycemic episode (meaning their body reacts to the stress of the

episode, and dumps it's stored glucose into the blood stream, overshooting

the " normal " levels, and going way high) When this happens with , his

system will fight to normalize itself, and is best left alone, with frequent

checks to make sure his sugars are returning to normal.

Hope this helps!! If I got anything wrong, feel free to correct me! LOL

Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-tube, GHT)

[Guest guest]

Pat - sounds like you are an expert to me! Thank you so much! It's

funny - but, I understand everything you said - just not as fluent

in the lingo! I didn't realize had rebounding issues as

well. I'm thinking Ian may too. We'll have to see. He's been

complaining his belly hurts too. Looks like we are in for a rough

winter!

By the way - how is these days?

Thank you again!

- H

>

> and H,

>

> I'm no expert, by far, but this is how I understand things.

>

> All RSS parents should invest in ketosticks, and periodically

check their

> child, (especially when they're sick) first thing in the morning,

for

> ketones. The output of ketones precipitates a drop in BS. A trace

of ketones

> is something to keep an eye on, moderate to high ketones is

something to

> worry about.

>

> Anyone can buy a glucometer (blood sugar tester) at any pharmacy,

however IF

> you can get a Dr to prescribe one, your insurance might pick up

the cost, or

> at least the cost of the lancets and test strips. The glucometer

ISN'T the

> most expensive part, the test strips are!!

>

> The main problem with low blood sugar is that blood glucose is the

ONLY food

> the brain can use. It's been suggested that frequent, or seriously

low

> episodes of BS, can cause brain damage, and that some learning

disabilities

> might be caused by this.

>

> When 's BS goes below 70 we use glucose gel, squirted into

his cheek

> pouch, to bring it up to a more normal level. If you don't have

glucose gel,

> gel icing can be used, although it isn't as effective. If your

child has a

> g-tube, we've resorted to Nestle Quik Strawberry syrup mixed with

a small

> amount of water, followed by a flush of the tube.

>

> Insulin is used to bring high BS down. You would not use it in the

case of a

> hypoglycemic episode. You also have to be careful about allowing

it's use in

> kids like or Maddy, because they have a tendency to

rebound after a

> hypoglycemic episode (meaning their body reacts to the stress of

the

> episode, and dumps it's stored glucose into the blood stream,

overshooting

> the " normal " levels, and going way high) When this happens with

, his

> system will fight to normalize itself, and is best left alone,

with frequent

> checks to make sure his sugars are returning to normal.

>

> Hope this helps!! If I got anything wrong, feel free to correct

me! LOL

>

> Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-

tube, GHT)

>

[Guest guest]

Pat

What a great explanation! I am always at a loss over this whole issue. I am gong

to print this out!

THANKS!!

Deb

Re: Re: sugars,ketones,and xrays?

and H,

I'm no expert, by far, but this is how I understand things.

All RSS parents should invest in ketosticks, and periodically check their

child, (especially when they're sick) first thing in the morning, for

ketones. The output of ketones precipitates a drop in BS. A trace of ketones

is something to keep an eye on, moderate to high ketones is something to

worry about.

Anyone can buy a glucometer (blood sugar tester) at any pharmacy, however IF

you can get a Dr to prescribe one, your insurance might pick up the cost, or

at least the cost of the lancets and test strips. The glucometer ISN'T the

most expensive part, the test strips are!!

The main problem with low blood sugar is that blood glucose is the ONLY food

the brain can use. It's been suggested that frequent, or seriously low

episodes of BS, can cause brain damage, and that some learning disabilities

might be caused by this.

When 's BS goes below 70 we use glucose gel, squirted into his cheek

pouch, to bring it up to a more normal level. If you don't have glucose gel,

gel icing can be used, although it isn't as effective. If your child has a

g-tube, we've resorted to Nestle Quik Strawberry syrup mixed with a small

amount of water, followed by a flush of the tube.

Insulin is used to bring high BS down. You would not use it in the case of a

hypoglycemic episode. You also have to be careful about allowing it's use in

kids like or Maddy, because they have a tendency to rebound after a

hypoglycemic episode (meaning their body reacts to the stress of the

episode, and dumps it's stored glucose into the blood stream, overshooting

the " normal " levels, and going way high) When this happens with , his

system will fight to normalize itself, and is best left alone, with frequent

checks to make sure his sugars are returning to normal.

Hope this helps!! If I got anything wrong, feel free to correct me! LOL

Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-tube, GHT)

[Guest guest]

Deb - I agree with you! Great idea about printing it out! You are

always thinking!

- H

>

> Pat

> What a great explanation! I am always at a loss over this whole

issue. I am gong to print this out!

> THANKS!!

> Deb

>

> Re: Re: sugars,ketones,and xrays?

>

>

> and H,

>

> I'm no expert, by far, but this is how I understand things.

>

> All RSS parents should invest in ketosticks, and periodically

check their

> child, (especially when they're sick) first thing in the

morning, for

> ketones. The output of ketones precipitates a drop in BS. A

trace of ketones

> is something to keep an eye on, moderate to high ketones is

something to

> worry about.

>

> Anyone can buy a glucometer (blood sugar tester) at any

pharmacy, however IF

> you can get a Dr to prescribe one, your insurance might pick up

the cost, or

> at least the cost of the lancets and test strips. The glucometer

ISN'T the

> most expensive part, the test strips are!!

>

> The main problem with low blood sugar is that blood glucose is

the ONLY food

> the brain can use. It's been suggested that frequent, or

seriously low

> episodes of BS, can cause brain damage, and that some learning

disabilities

> might be caused by this.

>

> When 's BS goes below 70 we use glucose gel, squirted

into his cheek

> pouch, to bring it up to a more normal level. If you don't have

glucose gel,

> gel icing can be used, although it isn't as effective. If your

child has a

> g-tube, we've resorted to Nestle Quik Strawberry syrup mixed

with a small

> amount of water, followed by a flush of the tube.

>

> Insulin is used to bring high BS down. You would not use it in

the case of a

> hypoglycemic episode. You also have to be careful about allowing

it's use in

> kids like or Maddy, because they have a tendency to

rebound after a

> hypoglycemic episode (meaning their body reacts to the stress of

the

> episode, and dumps it's stored glucose into the blood stream,

overshooting

> the " normal " levels, and going way high) When this happens with

, his

> system will fight to normalize itself, and is best left alone,

with frequent

> checks to make sure his sugars are returning to normal.

>

> Hope this helps!! If I got anything wrong, feel free to correct

me! LOL

>

> Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-

tube, GHT)

>

>

>

>

>

[Guest guest]

Thank you so much Pat. I'm taking notes right now. You are very knowledgeable in

so many areas. Thanks for being here!

pcpets wrote:

and H,

I'm no expert, by far, but this is how I understand things.

All RSS parents should invest in ketosticks, and periodically check their

child, (especially when they're sick) first thing in the morning, for

ketones. The output of ketones precipitates a drop in BS. A trace of ketones

is something to keep an eye on, moderate to high ketones is something to

worry about.

Anyone can buy a glucometer (blood sugar tester) at any pharmacy, however IF

you can get a Dr to prescribe one, your insurance might pick up the cost, or

at least the cost of the lancets and test strips. The glucometer ISN'T the

most expensive part, the test strips are!!

The main problem with low blood sugar is that blood glucose is the ONLY food

the brain can use. It's been suggested that frequent, or seriously low

episodes of BS, can cause brain damage, and that some learning disabilities

might be caused by this.

When 's BS goes below 70 we use glucose gel, squirted into his cheek

pouch, to bring it up to a more normal level. If you don't have glucose gel,

gel icing can be used, although it isn't as effective. If your child has a

g-tube, we've resorted to Nestle Quik Strawberry syrup mixed with a small

amount of water, followed by a flush of the tube.

Insulin is used to bring high BS down. You would not use it in the case of a

hypoglycemic episode. You also have to be careful about allowing it's use in

kids like or Maddy, because they have a tendency to rebound after a

hypoglycemic episode (meaning their body reacts to the stress of the

episode, and dumps it's stored glucose into the blood stream, overshooting

the " normal " levels, and going way high) When this happens with , his

system will fight to normalize itself, and is best left alone, with frequent

checks to make sure his sugars are returning to normal.

Hope this helps!! If I got anything wrong, feel free to correct me! LOL

Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-tube, GHT)

[Guest guest]

While the presence of ketones can precipitate low blood sugar, a

child CAN have large ketones and blood sugar levels can still be

within normal ranges. It is still vital that the child receive IV

fluids and remain on them until he is eating well enough to flush

the ketones and maintain a negative reading.

Do not ever let a doctor tell you that your child is okay if he is

spilling ketones. Don't let the doctor ignore your concerns if your

child is not looking or acting normally. These can be very serious

signs of a metabolic problem, usually ketones present and/or low

blood sugar. And blood sugar levels that are " normal " vary with

each child. Dr. H. does not like our kids to go below 80. Most are

symtomatic at that point.

The presence of ketones means that the body has used up its glycogen

stores for fuel and is not burning muscle instead of fat. The brain

will take whatever it needs at whatever cost to get it. In our

small kids, or even in big ones like Max, that balance can be easily

offset and must be treated right away.

Jodi Z

[Guest guest]

Jodi - thanks again for posting this. I'm saving your and Pat's

post! Thanks so much - you both are truly a God Send. We are all

so fortunate to be blessed by the knowledge we get from this list

serve.

- H

>

> While the presence of ketones can precipitate low blood sugar, a

> child CAN have large ketones and blood sugar levels can still be

> within normal ranges. It is still vital that the child receive IV

> fluids and remain on them until he is eating well enough to flush

> the ketones and maintain a negative reading.

>

> Do not ever let a doctor tell you that your child is okay if he is

> spilling ketones. Don't let the doctor ignore your concerns if

your

> child is not looking or acting normally. These can be very

serious

> signs of a metabolic problem, usually ketones present and/or low

> blood sugar. And blood sugar levels that are " normal " vary with

> each child. Dr. H. does not like our kids to go below 80. Most

are

> symtomatic at that point.

>

> The presence of ketones means that the body has used up its

glycogen

> stores for fuel and is not burning muscle instead of fat. The

brain

> will take whatever it needs at whatever cost to get it. In our

> small kids, or even in big ones like Max, that balance can be

easily

> offset and must be treated right away.

>

> Jodi Z

>