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Well I won't pretend to know much about this kind of stuff - the metabolic

things always kind of make my eyes glaze over... ;) But this is my

understanding from our experiences.

First of all for whomever asked about normal co2 levels - at our lab are

23-29. However, I believe that is actually a bit higher than most labs

which range between 20-29 (or something like that).

Abnormally low co2 levels can indicate some type of acidosis (lactic

acidosis, ketoacidosis, general kidney problems, etc...), but isn't

necessarily bad in and of itself. The co2 drops in response to increased

acid elsewhere - acting as a buffer for blood ph. Human blood ph ranges

from 7.35-7.45 and anything outside of that range can be very dangerous.

It's my understanding that when you start to run into problems is when the

co2 is no longer capable of buffering the acid, in which case you start

seeing other abnormal labs such as low sodium, low potassium, high chloride,

etc...

RTA menas that the kidneys are unable to reabsorb bicarbonate(measured by

co2) which is important to help maintain the precarious balance of

electrolytes and/or blood ph. It is not uncommon in mitochondrial disorders

and can cause metabolic acidosis.

My son's co2 runs around 17-18 on average and we did try treating it with

bicitra (at my request). However, we were not able to get enough bicitra

down him (it's pretty nasty tasting stuff and he doesn't have a tube) to

make an appreciable difference in the co2. His co2 is always low, lactic

acid is always high, and other electrolytes are always very slightly off or

at the very end of the normal ranges (due to RTA presumably) - so I was

hoping that maybe we could get him more in the middle and then wouldn't run

as much of a risk of having a major problem if they got a little more out of

whack. However, since the co2 was doing a good job of buffering the acid,

his other labs were relatively ok for the most part - and he wasn't showing

any clinical problems due to the low co2, we discontinued the bictra. His

labs are still screwy - but he has never (knock on wood), had a problem

because his body seems to be able to compensate really well - at least for

now. We do however keep a close eye on these labs and run them at least

every 4-6 weeks even though he doesn't currently have a problem with them.

Hopefully by keeping a close eye on them we will be able to pick up on any

real problems quickly and can restart the bicitra if necessary.

That said (my eyes have already glazed over) - this is just my understanding

from piecing together bits and pieces of various conversations I have had

with Carl's various doctors and I may be totally misinterpreting the whole

thing! Not very helpful huh? ;)

Terri

>

>Reply-To: Mito

>To: <Mito >

>Subject: Re: bicarb levels

>Date: Wed, 13 Jun 2001 20:56:16 -0700

>

>Hi Liz,

> I was wondering the same thing. My kids' CO2 levels are low (usually

>around 18) and no doctor ever said anything about meds. What's up with

>that?

>

>Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

>10 & 9-Both w/Leigh's Disease (?), MR (mild), g-tube,

>w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

>http://u2.lvcm.com/jscb

>

>

>

> > I was wondering what bicarb levels are considered normal? Nika's are

> > around 18 usually and noone has mentioned it to be a problem.

> > Thanks,

> > Liz

>

>

_________________________________________________________________

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Not sure if this helps, but on our most recent blood work, the Carbon Dioxide

ref range was 20-32

BIG hugs,

Kass

liz wrote:

I was wondering what bicarb levels are considered

normal? Nika's are

around 18 usually and noone has mentioned it to be a problem.

Thanks,

Liz

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Thanks a ton Terri!!! This was actually quite helpful to me and I

am sure the others also.

This makes a bit more sense to me now. When Madison was in Ketoacidosis,

in addition to the low CO2, her glucose, Creatinine, sodium, and

chloride were low also, and of course her serum acetone was through the

roof. While this latest blood work wasn't showing the other abnormal

results so is likely why the GI doc was thinking maybe it was an error.

In fact, it was possibly right, but just does not mean something alone

necessarily.

How does one know if RTA is happening??? And should blood pH be

checked when doing these metabolic tests?? I actually like the idea

of running the labs regularly (although hate the idea of sticking her so

frequently), even when things seem to be okay. Mind if I ask exactly

which tests are done??

Madison is down and out again, and seems to now be running on a 4 week

cycle. She does okay for 3 or so weeks, and then starts to act "off"

for lack of a better way to describe it. I imagine we'll either take

her in tomorrow, or wait till we are back from our trip this weekend to

run some tests and see if her lab work is showing whats happening.

Does anyone else out there seem to run in cycles like this?? Can't

really figure out what the process is thats going on, but would really

really like to know.

Thanks again for the explanation...it really did help!!

BIG hugs,

Kass

Terri Mason wrote:

Well I won't pretend to know much about this

kind of stuff - the metabolic

things always kind of make my eyes glaze over... ;) But this

is my

understanding from our experiences.

First of all for whomever asked about normal co2 levels -

at our lab are

23-29. However, I believe that is actually a bit higher than

most labs

which range between 20-29 (or something like that).

Abnormally low co2 levels can indicate some type of acidosis (lactic

acidosis, ketoacidosis, general kidney problems, etc...), but isn't

necessarily bad in and of itself. The co2 drops in response

to increased

acid elsewhere - acting as a buffer for blood ph. Human blood

ph ranges

from 7.35-7.45 and anything outside of that range can be very dangerous.

It's my understanding that when you start to run into problems

is when the

co2 is no longer capable of buffering the acid, in which case you

start

seeing other abnormal labs such as low sodium, low potassium, high

chloride,

etc...

RTA menas that the kidneys are unable to reabsorb bicarbonate(measured

by

co2) which is important to help maintain the precarious balance

of

electrolytes and/or blood ph. It is not uncommon in mitochondrial

disorders

and can cause metabolic acidosis.

My son's co2 runs around 17-18 on average and we did try treating

it with

bicitra (at my request). However, we were not able to get

enough bicitra

down him (it's pretty nasty tasting stuff and he doesn't have a

tube) to

make an appreciable difference in the co2. His co2 is always low,

lactic

acid is always high, and other electrolytes are always very slightly

off or

at the very end of the normal ranges (due to RTA presumably) -

so I was

hoping that maybe we could get him more in the middle and then

wouldn't run

as much of a risk of having a major problem if they got a little

more out of

whack. However, since the co2 was doing a good job of buffering

the acid,

his other labs were relatively ok for the most part - and he wasn't

showing

any clinical problems due to the low co2, we discontinued the bictra.

His

labs are still screwy - but he has never (knock on wood), had a

problem

because his body seems to be able to compensate really well - at

least for

now. We do however keep a close eye on these labs and run

them at least

every 4-6 weeks even though he doesn't currently have a problem

with them.

Hopefully by keeping a close eye on them we will be able to pick

up on any

real problems quickly and can restart the bicitra if necessary.

That said (my eyes have already glazed over) - this is just my understanding

from piecing together bits and pieces of various conversations

I have had

with Carl's various doctors and I may be totally misinterpreting

the whole

thing! Not very helpful huh? ;)

Terri

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In a message dated 06/14/2001 3:26:06 AM Eastern Daylight Time,

kass@... writes:

<< Madison is down and out again, and seems to now be running on a 4 week

cycle. She does okay for 3 or so weeks, and then starts to act " off "

for lack of a better way to describe it. I imagine we'll either take

her in tomorrow, or wait till we are back from our trip this weekend to

run some tests and see if her lab work is showing whats happening. Does

anyone else out there seem to run in cycles like this?? C >>

Kass:

Yes, my daughter's lethargy is cyclic and I think it has something to do with

the amount of fats that she eats at a particular time.

The geneticist wants us to run labs on her when she is sick so we are

awaiting this. (What a thing to look forward to!;)).

Michele

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Kass,

Well I'm glad you found it helpful - I just hope it's accurate! ;)

As far as the blood ph - no, I don't think it's necessary to run on a

regular basis although it might be useful as part of an RTA workup - but I'm

not sure.

As far as labs that we run, we just run a basic metabolic panel which

includes Sodium, Potassium, Chloride, Co2, BUN, Creatinine, Glucose and

Calcium. We also run a lactic acid level. I should also mention that the

only reason we run them so often is that he is getting stuck anyway for his

IVIG infusion. If he were not - we probably wouldn't run them nearly as

often. You might want to consider having your ped leave a standing order

with the lab so that if she is particularly ill or you are concerned about

something, you can pop in and just have them run the basic metabolic panel.

This way you could avoid the routine sticks but still be able to check if

you are concerned - without having to make an appointment with the doc.

Before he was getting IVIG we did this to try and figure out if there was a

correlation between some problems he was having and the labs. Turns out

there wasn't - in fact he would often be doing particularly bad and his labs

would look better than usual - go figure!

To be quite honest, I have no idea how they determine whether or not it's

RTA. On top of that there are several different types - with Type I

(distal) and Type II (proximal) both seen in mitochondrial disorders (maybe

even Types III and IV, but I'm not sure). I'm more familiar with Type II

since that's what Carl has, and my understanding is that you would expect to

see low co2 levels in the blood and a urine ph over 5-5.5 (opinions differ

as to the specific number) Some other labs that might be abnormal are low

sodium, low potassium and high chloride. I know that for the Uridine study

that UCSD is working on, they are defining RTA as blood co2 of 18 or lower

with a urine ph of 5.3 or higher - but I'm not sure how standard that is.

I hope this helps!

Terri

>

>Reply-To: Mito

>To: Mito

>Subject: Re: bicarb levels

>Date: Thu, 14 Jun 2001 01:34:59 -0500

>

>Thanks a ton Terri!!! This was actually quite helpful to me and I am

>sure the others also.

>

>This makes a bit more sense to me now. When Madison was in

>Ketoacidosis, in addition to the low CO2, her glucose, Creatinine,

>sodium, and chloride were low also, and of course her serum acetone was

>through the roof. While this latest blood work wasn't showing the other

>abnormal results so is likely why the GI doc was thinking maybe it was

>an error. In fact, it was possibly right, but just does not mean

>something alone necessarily.

>

>How does one know if RTA is happening??? And should blood pH be checked

>when doing these metabolic tests?? I actually like the idea of running

>the labs regularly (although hate the idea of sticking her so

>frequently), even when things seem to be okay. Mind if I ask exactly

>which tests are done??

>

>Madison is down and out again, and seems to now be running on a 4 week

>cycle. She does okay for 3 or so weeks, and then starts to act " off "

>for lack of a better way to describe it. I imagine we'll either take

>her in tomorrow, or wait till we are back from our trip this weekend to

>run some tests and see if her lab work is showing whats happening. Does

>anyone else out there seem to run in cycles like this?? Can't really

>figure out what the process is thats going on, but would really really

>like to know.

>

>Thanks again for the explanation...it really did help!!

>

>BIG hugs,

>Kass

>

>Terri Mason wrote:

>

> > Well I won't pretend to know much about this kind of stuff - the

> > metabolic

> > things always kind of make my eyes glaze over... ;) But this is my

> > understanding from our experiences.

> >

> > First of all for whomever asked about normal co2 levels - at our lab

> > are

> > 23-29. However, I believe that is actually a bit higher than most

> > labs

> > which range between 20-29 (or something like that).

> >

> > Abnormally low co2 levels can indicate some type of acidosis (lactic

> > acidosis, ketoacidosis, general kidney problems, etc...), but isn't

> > necessarily bad in and of itself. The co2 drops in response to

> > increased

> > acid elsewhere - acting as a buffer for blood ph. Human blood ph

> > ranges

> > from 7.35-7.45 and anything outside of that range can be very

> > dangerous.

> > It's my understanding that when you start to run into problems is when

> > the

> > co2 is no longer capable of buffering the acid, in which case you

> > start

> > seeing other abnormal labs such as low sodium, low potassium, high

> > chloride,

> > etc...

> >

> > RTA menas that the kidneys are unable to reabsorb bicarbonate(measured

> > by

> > co2) which is important to help maintain the precarious balance of

> > electrolytes and/or blood ph. It is not uncommon in mitochondrial

> > disorders

> > and can cause metabolic acidosis.

> >

> > My son's co2 runs around 17-18 on average and we did try treating it

> > with

> > bicitra (at my request). However, we were not able to get enough

> > bicitra

> > down him (it's pretty nasty tasting stuff and he doesn't have a tube)

> > to

> > make an appreciable difference in the co2. His co2 is always low,

> > lactic

> > acid is always high, and other electrolytes are always very slightly

> > off or

> > at the very end of the normal ranges (due to RTA presumably) - so I

> > was

> > hoping that maybe we could get him more in the middle and then

> > wouldn't run

> > as much of a risk of having a major problem if they got a little more

> > out of

> > whack. However, since the co2 was doing a good job of buffering the

> > acid,

> > his other labs were relatively ok for the most part - and he wasn't

> > showing

> > any clinical problems due to the low co2, we discontinued the bictra.

> > His

> > labs are still screwy - but he has never (knock on wood), had a

> > problem

> > because his body seems to be able to compensate really well - at least

> > for

> > now. We do however keep a close eye on these labs and run them at

> > least

> > every 4-6 weeks even though he doesn't currently have a problem with

> > them.

> > Hopefully by keeping a close eye on them we will be able to pick up on

> > any

> > real problems quickly and can restart the bicitra if necessary.

> >

> > That said (my eyes have already glazed over) - this is just my

> > understanding

> > from piecing together bits and pieces of various conversations I have

> > had

> > with Carl's various doctors and I may be totally misinterpreting the

> > whole

> > thing! Not very helpful huh? ;)

> >

> > Terri

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Guest guest

,

I have a really good, simple article that explains many different

kidney disorders, including renal tubular acidosis, but I will have to

dig it out to find the web site it was drawn off of. I'll do that soon,

and get back to you on it!!

I'm so glad to hear that is doing well. Many, many *hugs* to you

both!

#1

wagm0707@... wrote:

>

> > Hi !

> > I don't think that a tourniquet would affect blood CO2 levels. I

> don't

> > know for sure, though, since Matty's labs were always drawn from his

>

> > central line.

> > In any case, a bicarb of 13 definitely needs addressed. How did Dr.

> > Cohen want to treat him? Bicitra or Polycitra? Or oral or IV sodium

> > bicarbonate?? Matty also had a huge problem with low bicarbs,

> although

> > unless he was sick, he didn't have an ongoing battle with it until

> we

> > ran into kidney trouble (RTA and Fanconi's). We initially tried to

> use

> > Polycitra for Matty, but it didn't work at all. I think something

> about

> > Polycitra being metabolized into bicarb in the liver, and since

> Matty's

> > liver was all crapped out (lol) he just didn't metabolize it. Then

> we

> > tried oral bicarb, which would have worked, except for that in

> order to

> > stabilize his bicarb (we were happy if we could keep it at 17 or

> 18),

> > the volume of oral bicarb we had to give was so large, Matty

> couldn't

> > tolerate it. So we eventually had to move on to IV bicarb, which ran

>

> > 24/7 for the last several months of Matty's life.

> >

> > Other than the bicarb issue, how is doing?? How are you

> holding up,

> > Mom??

> >

> > *hugs*

> > #1 (lol)

>

> Hi Again !

>

> He seems to be doing OK, he just finished up kindergarten and is

> going to be going to school all day next year-if he is up to it. His

> school has been great about getting him everything he needs. I am

> doing well, Josh, the three year old is keeping me BUSY! I also

> started going to school to become an OT, so it stops me from

> obsessing about 24-7.

>

> I did not personally talk to Dr. Cohen, so I do not know exactly what

> they are putting him on. A nurse called me and told me about the labs

> because I called them two days ago to find out what was up. She just

> said that it could have something to do with RTA (which, what in the

> world is that?) and she was going to call in a prescription-of course

> Rite Aid here has to order it. After being on it for 7 days they want

> a lab done and then redone periodically.

>

> Thanks for the help, some info on RTA would be nice too! :o)

>

> (#2)

> ****I didn't want to confuse people!

> >

> >

>

>

>

>

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Hi, I just wanted to add that my son's nephrologist has always

insisted that we make sure the tournequet is off in sixty seconds or

less to prevent a 'traumatic stick' and lowered CO2 readings. If they

have trouble drawing his blood and the tournequet stays on longer,

CO2 is always lower.

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