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Re: More on CO2 levels

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Matt had a similar experience. Just before he was 2 years old he

was diagnosed with Renal Tubular Acidosis (RTA). He had metabolic

acidosis on a couple of blood tests, but his urine tests showed

negative for ketones. So we started on the meds for RTA and the

nephrologist said no, he thought the lab tests were wrong. We

retested and Matt was fine.

SO, now, upteen years later, I think he was acidotic 'at times' and

the labs were unreliable because Matt was unreliable. Did he eat

well the day before, etc.

The connection between ketones and CO2 levels - ketone is an acid.

So if you have a build up of ketones in your blood, your body

recognizes you have too much acid, so one way to control that is

to " over breathe " and breathe off more CO2 (CO2 is also an acid, but

an easier acid to get rid of by breathing). Which brings your acid-

alkaline ratio closer to normal, but lowers your CO2.

So, I would recommend if your child is acidotic, to really

investigate the ketone situation.

Beth

PS - that nursing degree is coming in handy.....

> OK, Jen Salem here. I went back through 's lab reports

when

> she was 18 months old and later, and found the info. Then went on-

> line for more info.

>

> First of all, " C02 levels " are part of an overall blood chemistry

> panel taken from your child. Here is what the website said about

> the lab test for C02....

>

> How is it used?

> Carbon dioxide levels are almost always done as part of an

> electrolyte panel to tell your doctor whether your sodium,

> potassium, chloride, and bicarbonate (H2CO3-, measured as total

CO2)

> are in balance. They may be done as part of an annual screen,

> included as part of a basic or comprehensive metabolic panel, or

> done when your doctor suspects an imbalance. The CO2 test is also

> done when your doctor is evaluating your acid-base balance, to

> screen for an imbalance, and to monitor a known problem during

> treatment.

>

>

> OK, so then what often happens is that our children can test LOW

on

> the overall C02. This can signal to a doctor a metabolic acidosis

> problem (can be indicative of a more severe metabolic problem) or

> also a kidney problem.

>

> In 's case, they sent us on to a metabolic specialist and a

> nephrologist, for another 3-4 weeks of testing and waiting

(horrible

> waiting). Her test results were random -- one time her CO2s were

> low; another time they would be normal; and then low again.

>

> Finally, it was on to Genetics Dept at Yale Children's.

>

> Lo and behold, what we learned from them is that our children,

> especially when fighting infections ( had a urine infection

> at that time they found), can spill ketones. Now, I don't think

> that spilling ketones IS C02 -- I just think that they are

connected.

>

> But what I do remember, but this is a long time ago, is that low

C02

> levels for an RSS child should be treated as the same as ketones --

> give food, get carbos into the child so the glycogen storage

levels

> go up. But we shouldn't have needed to have put her through all

> those kidney and metabolic tests. UGH!

>

>

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Hi and all

you said something that really triggered my mind about

acidosis. When was in the ICU after her open heart surgery in

November of 2003, about the second or third day they told me that

's blood work showed that she is acidosis and that they are

consulting with a kidney specialist because she was not responding or

the levels weren't going down even though she started eating and

drinking. Now keep in mind that a week prior to her surgery she was

diagnosed RSS by a geneticist at Columbia Presbyterian where she had

the surgery. At that point they made the decision to give a

blood transfusion as well I'm not sure if there were any other factors

for that decision or what. Thankfully we had blood donated prior to

her surgery. However, at the time I had no idea of any correlation

between RSS and kidney problems. I wish I could be of more info or

help but they did say that it was somewhat normal because of the

surgery. I just hope that the kidney specialist was aware of the RSS

and the correlation. I know that her binder that stayed with her bed

every report or note was marked that she was a 3 3/4 year old RSS

female. So hopefully.

Is there any article from Magic on this? I would be very interested to

read it.

Thanks

B

4 3/4 RSS and Kelli 2 Non RSS

> OK, Jen Salem here. I went back through 's lab reports when

> she was 18 months old and later, and found the info. Then went on-

> line for more info.

>

> First of all, " C02 levels " are part of an overall blood chemistry

> panel taken from your child. Here is what the website said about

> the lab test for C02....

>

> How is it used?

> Carbon dioxide levels are almost always done as part of an

> electrolyte panel to tell your doctor whether your sodium,

> potassium, chloride, and bicarbonate (H2CO3-, measured as total CO2)

> are in balance. They may be done as part of an annual screen,

> included as part of a basic or comprehensive metabolic panel, or

> done when your doctor suspects an imbalance. The CO2 test is also

> done when your doctor is evaluating your acid-base balance, to

> screen for an imbalance, and to monitor a known problem during

> treatment.

>

>

> OK, so then what often happens is that our children can test LOW on

> the overall C02. This can signal to a doctor a metabolic acidosis

> problem (can be indicative of a more severe metabolic problem) or

> also a kidney problem.

>

> In 's case, they sent us on to a metabolic specialist and a

> nephrologist, for another 3-4 weeks of testing and waiting (horrible

> waiting). Her test results were random -- one time her CO2s were

> low; another time they would be normal; and then low again.

>

> Finally, it was on to Genetics Dept at Yale Children's.

>

> Lo and behold, what we learned from them is that our children,

> especially when fighting infections ( had a urine infection

> at that time they found), can spill ketones. Now, I don't think

> that spilling ketones IS C02 -- I just think that they are connected.

>

> But what I do remember, but this is a long time ago, is that low C02

> levels for an RSS child should be treated as the same as ketones --

> give food, get carbos into the child so the glycogen storage levels

> go up. But we shouldn't have needed to have put her through all

> those kidney and metabolic tests. UGH!

>

>

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Renal Tubular Acidosis is the name they diagnosed with, and

they prescribed, gosh, I think it was something called

bicarbinate???? MOnths later, another doctor said " wait a second,

this doesn't make any sense " and explained that 's acidosis

levels were a result of the RSS, not eating, etc. Thank you for

your nursing degree that helps explain things!!

> > OK, Jen Salem here. I went back through 's lab reports

> when

> > she was 18 months old and later, and found the info. Then went

on-

> > line for more info.

> >

> > First of all, " C02 levels " are part of an overall blood

chemistry

> > panel taken from your child. Here is what the website said

about

> > the lab test for C02....

> >

> > How is it used?

> > Carbon dioxide levels are almost always done as part of an

> > electrolyte panel to tell your doctor whether your sodium,

> > potassium, chloride, and bicarbonate (H2CO3-, measured as total

> CO2)

> > are in balance. They may be done as part of an annual screen,

> > included as part of a basic or comprehensive metabolic panel, or

> > done when your doctor suspects an imbalance. The CO2 test is

also

> > done when your doctor is evaluating your acid-base balance, to

> > screen for an imbalance, and to monitor a known problem during

> > treatment.

> >

> >

> > OK, so then what often happens is that our children can test LOW

> on

> > the overall C02. This can signal to a doctor a metabolic

acidosis

> > problem (can be indicative of a more severe metabolic problem)

or

> > also a kidney problem.

> >

> > In 's case, they sent us on to a metabolic specialist and

a

> > nephrologist, for another 3-4 weeks of testing and waiting

> (horrible

> > waiting). Her test results were random -- one time her CO2s

were

> > low; another time they would be normal; and then low again.

> >

> > Finally, it was on to Genetics Dept at Yale Children's.

> >

> > Lo and behold, what we learned from them is that our children,

> > especially when fighting infections ( had a urine

infection

> > at that time they found), can spill ketones. Now, I don't think

> > that spilling ketones IS C02 -- I just think that they are

> connected.

> >

> > But what I do remember, but this is a long time ago, is that low

> C02

> > levels for an RSS child should be treated as the same as

ketones --

>

> > give food, get carbos into the child so the glycogen storage

> levels

> > go up. But we shouldn't have needed to have put her through all

> > those kidney and metabolic tests. UGH!

> >

> >

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Jen Briggs - no article on the CO2 levels, but I printed out Beth's

great explanation, and am going to work with one of my " contributing

authors " to make sure I can include it in the Guidebook. I am using

contributing authors whenever it is a subject OVER MY HEAD....

ha!!!

> > OK, Jen Salem here. I went back through 's lab reports

when

> > she was 18 months old and later, and found the info. Then went

on-

> > line for more info.

> >

> > First of all, " C02 levels " are part of an overall blood

chemistry

> > panel taken from your child. Here is what the website said

about

> > the lab test for C02....

> >

> > How is it used?

> > Carbon dioxide levels are almost always done as part of an

> > electrolyte panel to tell your doctor whether your sodium,

> > potassium, chloride, and bicarbonate (H2CO3-, measured as total

CO2)

> > are in balance. They may be done as part of an annual screen,

> > included as part of a basic or comprehensive metabolic panel, or

> > done when your doctor suspects an imbalance. The CO2 test is

also

> > done when your doctor is evaluating your acid-base balance, to

> > screen for an imbalance, and to monitor a known problem during

> > treatment.

> >

> >

> > OK, so then what often happens is that our children can test LOW

on

> > the overall C02. This can signal to a doctor a metabolic

acidosis

> > problem (can be indicative of a more severe metabolic problem)

or

> > also a kidney problem.

> >

> > In 's case, they sent us on to a metabolic specialist and

a

> > nephrologist, for another 3-4 weeks of testing and waiting

(horrible

> > waiting). Her test results were random -- one time her CO2s

were

> > low; another time they would be normal; and then low again.

> >

> > Finally, it was on to Genetics Dept at Yale Children's.

> >

> > Lo and behold, what we learned from them is that our children,

> > especially when fighting infections ( had a urine

infection

> > at that time they found), can spill ketones. Now, I don't think

> > that spilling ketones IS C02 -- I just think that they are

connected.

> >

> > But what I do remember, but this is a long time ago, is that low

C02

> > levels for an RSS child should be treated as the same as

ketones --

> > give food, get carbos into the child so the glycogen storage

levels

> > go up. But we shouldn't have needed to have put her through all

> > those kidney and metabolic tests. UGH!

> >

> >

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Jen,

I just fired off a letter to my BIL, but he is just getting back

from IRAQ so he may not have time for his " favorite " sister in law.

But, Matt was on bicarb, too. For a couple of weeks. When the

nephrologist said no, let's retest, it was his theory that the low

CO2 showed up since the blood sample sat in the lab for 24 hours

before it was tested. When we ran the repeat tests, at the same

facility it was drawn at, the results were normal.

It is interesting at least.

Beth

> > > OK, Jen Salem here. I went back through 's lab reports

> > when

> > > she was 18 months old and later, and found the info. Then

went

> on-

> > > line for more info.

> > >

> > > First of all, " C02 levels " are part of an overall blood

> chemistry

> > > panel taken from your child. Here is what the website said

> about

> > > the lab test for C02....

> > >

> > > How is it used?

> > > Carbon dioxide levels are almost always done as part of an

> > > electrolyte panel to tell your doctor whether your sodium,

> > > potassium, chloride, and bicarbonate (H2CO3-, measured as

total

> > CO2)

> > > are in balance. They may be done as part of an annual screen,

> > > included as part of a basic or comprehensive metabolic panel,

or

> > > done when your doctor suspects an imbalance. The CO2 test is

> also

> > > done when your doctor is evaluating your acid-base balance, to

> > > screen for an imbalance, and to monitor a known problem during

> > > treatment.

> > >

> > >

> > > OK, so then what often happens is that our children can test

LOW

> > on

> > > the overall C02. This can signal to a doctor a metabolic

> acidosis

> > > problem (can be indicative of a more severe metabolic problem)

> or

> > > also a kidney problem.

> > >

> > > In 's case, they sent us on to a metabolic specialist

and

> a

> > > nephrologist, for another 3-4 weeks of testing and waiting

> > (horrible

> > > waiting). Her test results were random -- one time her CO2s

> were

> > > low; another time they would be normal; and then low again.

> > >

> > > Finally, it was on to Genetics Dept at Yale Children's.

> > >

> > > Lo and behold, what we learned from them is that our children,

> > > especially when fighting infections ( had a urine

> infection

> > > at that time they found), can spill ketones. Now, I don't

think

> > > that spilling ketones IS C02 -- I just think that they are

> > connected.

> > >

> > > But what I do remember, but this is a long time ago, is that

low

> > C02

> > > levels for an RSS child should be treated as the same as

> ketones --

> >

> > > give food, get carbos into the child so the glycogen storage

> > levels

> > > go up. But we shouldn't have needed to have put her through

all

> > > those kidney and metabolic tests. UGH!

> > >

> > >

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