Re: Heavy drinking!!! ... was ... Re: stress reac

[Guest guest]

In a message dated 4/21/02 10:01:37 PM Pacific Daylight Time,

mitoscottie@... writes:

<< Excessive thirst can be a signal of blood sugar problems ... is it

possible he may have juvenile Diabetes? Just a thought.

>>

I was reading back over 's old medical records this wkend and found a

note where I had this (diabetes) concern for when he was 2 years old

(he's now 10) because of his excessive thirst. He had a couple of blood

sugar tests which were normal so I just chalked it up to being the way he

drank. So, I was very surprised when his drinking level dropped to " normal "

after being treated for his chronic ketoacidosis. I'm wondering how many of

our mito kids do have extremely high ketone body levels when under

stress/illness? Have many of you had urinary organic acids done when ill?

If so, how high were the ketone bodies (3-OH-butyric acid and acetoacetic

acid)? I'm just curious.....

Dena

[Guest guest]

In a message dated 4/21/02 10:01:37 PM Pacific Daylight Time,

mitoscottie@... writes:

<< Excessive thirst can be a signal of blood sugar problems ... is it

possible he may have juvenile Diabetes? Just a thought.

>>

I was reading back over 's old medical records this wkend and found a

note where I had this (diabetes) concern for when he was 2 years old

(he's now 10) because of his excessive thirst. He had a couple of blood

sugar tests which were normal so I just chalked it up to being the way he

drank. So, I was very surprised when his drinking level dropped to " normal "

after being treated for his chronic ketoacidosis. I'm wondering how many of

our mito kids do have extremely high ketone body levels when under

stress/illness? Have many of you had urinary organic acids done when ill?

If so, how high were the ketone bodies (3-OH-butyric acid and acetoacetic

acid)? I'm just curious.....

Dena

[Guest guest]

In a message dated 4/22/02 1:29:07 PM Pacific Daylight Time,

sawyerjeannine@... writes:

<< Cure the ketones, and

you probably cure the excess thirst.

Jeannine >>

Exactly Jeannine! and also have either low or normal blood

sugar with their ketosis.

Dena

[Guest guest]

waislandgirl@... wrote:

> So, I was very surprised when his drinking level dropped to " normal "

> after being treated for his chronic ketoacidosis. I'm wondering how many of

> our mito kids do have extremely high ketone body levels when under

> stress/illness?

My girls both spill ketones a lot, and especially when they are ill. The more

ketones they spill, the greater their urine output is, and this usually makes

them thirsty in an effort to catch up. When the ketone levels rise, your

kidneys

try to eliminate them by increasing urine output. This happens in diabetics for

the same reason. But with my girls it is not high blood sugar, but usually low

blood sugar along with ketones that drives this response. Cure the ketones, and

you probably cure the excess thirst.

Jeannine

[Guest guest]

Thanks Jeannine ... you are right! Excessive thirst happens with high blood

sugar

levels and with low blood sugar and ketone spilling.

Jean

Jeannine and Curtis Sawyer wrote:

> waislandgirl@... wrote:

>

> > So, I was very surprised when his drinking level dropped to " normal "

> > after being treated for his chronic ketoacidosis. I'm wondering how many of

> > our mito kids do have extremely high ketone body levels when under

> > stress/illness?

>

> My girls both spill ketones a lot, and especially when they are ill. The more

> ketones they spill, the greater their urine output is, and this usually makes

> them thirsty in an effort to catch up. When the ketone levels rise, your

kidneys

> try to eliminate them by increasing urine output. This happens in diabetics

for

> the same reason. But with my girls it is not high blood sugar, but usually

low

> blood sugar along with ketones that drives this response. Cure the ketones,

and

> you probably cure the excess thirst.

>

> Jeannine

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Yes that is the way my girls have always been, especially Caitlin. I

think a lot of her acidosis in the past has been due to the ketones,

rather than always lactic acid. In fact she had a few really acute

hospitalizations in the early years as a result of ketoacidosis and all

that goes with it. I know that at least one of them where she was

severely acidotic her lactic acid was only mildly elevated. However,

her ketones were significant. She's ended up in ICU a couple of times

as a result.

We use Biotin and have had good results. While waiting for tests

results to come back, her metabolic doc increased the dose, she

responded well and has done well since.

Jeannine

[Guest guest]

waislandgirl@... wrote:

I'm wondering how many of

our mito kids do have extremely high ketone body levels when under

stress/illness? Have many of you had urinary organic acids

done when ill?

If so, how high were the ketone bodies (3-OH-butyric acid and acetoacetic

acid)? I'm just curious.....

Dena

This is all so interesting. Madison was a heavy drinker (sounds bad!!

LOL) when she was younger, so much so that we did check for diabetes at

one point. Her therapists just marveled at how much she could put

away, and she always had a drink in hand. At one point this decreased

to a more normal level, and interestingly, this was also the time period

where her unusual body odor disappeared for a little while. It all

came back in full force a few months later, and then only when she began

having swallowing difficulties did the fluid intake reduce again.

We have documented Madison spilling ketones regularly, especially during

stressful times for her. We have only done lab work once when she

was ill, after a strange spell she had last May (went pale, was not sweating,

vomited, was unresponsive, and then went to sleep immediatly). We

thought she just had a stomach bug or something (this was after her mito

dx, but the first time her heat intolerance reared its head), so took her

home and did not see the doctor till the next day. By that time she

was reasonably responsive, still didn't feel great but was much better.

Her ped wanted to draw labs "just to see" what they looked like when she

was not 100%, but did not really expect there to be anything significant.

Blood work came back with all kinds of abnormalities (Glucose was low,

creatine was low, sodium was on the bottom of the ref ranges, chloride

was at the bottom of ref ranges, carbon dioxide was low, and she had major

ketone spillage in her urine sample), but most significant was her blood

acetone level, which was 19.7 (ref range 0.0-2.0 with 20 being toxic).

My understanding was that the blood acetone was what the ketones turned

into when they started building in the blood when they were unable to flush

it all through the kidneys. Her ped was shocked that she was not

in a coma, and that these numbers were more than 24 hours after she was

at her worst. Only explanation has been that she is likely in this

state regularly and her body has learned to cope with it, even though it

really should not.

Dr. Cohen was consulted about it, and basically the doc's all told me

that I can "never let this happen again"!! Just a little pressure

there!! Concensus is that in her case exercise and heat intolerance

are the precipitators (atleast the ones I have some control over) so she

is on heat and exercise restrictions to try and avoid another episode.

Additionally we attempt to limit things so as to not stress her system

(less time at school, regular bedtime and making sure she gets enough rest,

etc). Seems to be the only thing we can do at this point.

BIG hugs,

Kass

PS...thanks to EVERYONE for your responses to my "stress reaction" post!!

I'm backlogged and trying to catch up!!!

[Guest guest]

waislandgirl@... wrote:

I'm wondering how many of

our mito kids do have extremely high ketone body levels when under

stress/illness? Have many of you had urinary organic acids

done when ill?

If so, how high were the ketone bodies (3-OH-butyric acid and acetoacetic

acid)? I'm just curious.....

Dena

This is all so interesting. Madison was a heavy drinker (sounds bad!!

LOL) when she was younger, so much so that we did check for diabetes at

one point. Her therapists just marveled at how much she could put

away, and she always had a drink in hand. At one point this decreased

to a more normal level, and interestingly, this was also the time period

where her unusual body odor disappeared for a little while. It all

came back in full force a few months later, and then only when she began

having swallowing difficulties did the fluid intake reduce again.

We have documented Madison spilling ketones regularly, especially during

stressful times for her. We have only done lab work once when she

was ill, after a strange spell she had last May (went pale, was not sweating,

vomited, was unresponsive, and then went to sleep immediatly). We

thought she just had a stomach bug or something (this was after her mito

dx, but the first time her heat intolerance reared its head), so took her

home and did not see the doctor till the next day. By that time she

was reasonably responsive, still didn't feel great but was much better.

Her ped wanted to draw labs "just to see" what they looked like when she

was not 100%, but did not really expect there to be anything significant.

Blood work came back with all kinds of abnormalities (Glucose was low,

creatine was low, sodium was on the bottom of the ref ranges, chloride

was at the bottom of ref ranges, carbon dioxide was low, and she had major

ketone spillage in her urine sample), but most significant was her blood

acetone level, which was 19.7 (ref range 0.0-2.0 with 20 being toxic).

My understanding was that the blood acetone was what the ketones turned

into when they started building in the blood when they were unable to flush

it all through the kidneys. Her ped was shocked that she was not

in a coma, and that these numbers were more than 24 hours after she was

at her worst. Only explanation has been that she is likely in this

state regularly and her body has learned to cope with it, even though it

really should not.

Dr. Cohen was consulted about it, and basically the doc's all told me

that I can "never let this happen again"!! Just a little pressure

there!! Concensus is that in her case exercise and heat intolerance

are the precipitators (atleast the ones I have some control over) so she

is on heat and exercise restrictions to try and avoid another episode.

Additionally we attempt to limit things so as to not stress her system

(less time at school, regular bedtime and making sure she gets enough rest,

etc). Seems to be the only thing we can do at this point.

BIG hugs,

Kass

PS...thanks to EVERYONE for your responses to my "stress reaction" post!!

I'm backlogged and trying to catch up!!!

[Guest guest]

waislandgirl@... wrote:

I'm wondering how many of

our mito kids do have extremely high ketone body levels when under

stress/illness? Have many of you had urinary organic acids

done when ill?

If so, how high were the ketone bodies (3-OH-butyric acid and acetoacetic

acid)? I'm just curious.....

Dena

This is all so interesting. Madison was a heavy drinker (sounds bad!!

LOL) when she was younger, so much so that we did check for diabetes at

one point. Her therapists just marveled at how much she could put

away, and she always had a drink in hand. At one point this decreased

to a more normal level, and interestingly, this was also the time period

where her unusual body odor disappeared for a little while. It all

came back in full force a few months later, and then only when she began

having swallowing difficulties did the fluid intake reduce again.

We have documented Madison spilling ketones regularly, especially during

stressful times for her. We have only done lab work once when she

was ill, after a strange spell she had last May (went pale, was not sweating,

vomited, was unresponsive, and then went to sleep immediatly). We

thought she just had a stomach bug or something (this was after her mito

dx, but the first time her heat intolerance reared its head), so took her

home and did not see the doctor till the next day. By that time she

was reasonably responsive, still didn't feel great but was much better.

Her ped wanted to draw labs "just to see" what they looked like when she

was not 100%, but did not really expect there to be anything significant.

Blood work came back with all kinds of abnormalities (Glucose was low,

creatine was low, sodium was on the bottom of the ref ranges, chloride

was at the bottom of ref ranges, carbon dioxide was low, and she had major

ketone spillage in her urine sample), but most significant was her blood

acetone level, which was 19.7 (ref range 0.0-2.0 with 20 being toxic).

My understanding was that the blood acetone was what the ketones turned

into when they started building in the blood when they were unable to flush

it all through the kidneys. Her ped was shocked that she was not

in a coma, and that these numbers were more than 24 hours after she was

at her worst. Only explanation has been that she is likely in this

state regularly and her body has learned to cope with it, even though it

really should not.

Dr. Cohen was consulted about it, and basically the doc's all told me

that I can "never let this happen again"!! Just a little pressure

there!! Concensus is that in her case exercise and heat intolerance

are the precipitators (atleast the ones I have some control over) so she

is on heat and exercise restrictions to try and avoid another episode.

Additionally we attempt to limit things so as to not stress her system

(less time at school, regular bedtime and making sure she gets enough rest,

etc). Seems to be the only thing we can do at this point.

BIG hugs,

Kass

PS...thanks to EVERYONE for your responses to my "stress reaction" post!!

I'm backlogged and trying to catch up!!!

[Guest guest]

Sounds like Madison and are very similar! This is exactly how

presents with heat also. He just looks like a wilted flower. Fortunately we

live in one of the coolest parts of the country for summertime! (Pacific NW)

But, when he went on MAW last May to Disney Cruise, he spent a lot of time

in the wheelchair because of the heat. The same thing happened when we went

to Disneyland in California on a family vacation.

For , we use high salt diet, Gatorade for hydration, to keep his blood

pressure up, Bicitra to buffer his ketones and a high carb/low protein diet.

We haven't dealt with heat yet, but this seems to be working well for our

cooler temps. And, he hasn't been sick in 4 1/2 months...a new record!!! :-)

( also had a high acetone level (don't remember the exact number) once

prediagnosis.)

Dena

[Guest guest]

Oh Kass, I meant to ask you....did Madison have a muscle biopsy? If yes or

no, which mito disorder has she been diagnosed with by Dr. Cohen? Have you

ever wondered about MIDS?

Dena

[Guest guest]

Oh Kass, I meant to ask you....did Madison have a muscle biopsy? If yes or

no, which mito disorder has she been diagnosed with by Dr. Cohen? Have you

ever wondered about MIDS?

Dena

[Guest guest]

Oh Kass, I meant to ask you....did Madison have a muscle biopsy? If yes or

no, which mito disorder has she been diagnosed with by Dr. Cohen? Have you

ever wondered about MIDS?

Dena

[Guest guest]

Hi Kass:

Off subject of mito here and need to ask you a few questions regarding

the fund raiser down in Texas. We are in the process of fundraising

for a fully accessible playground here in Appleton, WI. Scheduled

to be built 2003. The park will cost approximately $175,000.

Most for the rubberized surfacing. You had done a raffle for a car.

How much were the tickets? Did you sell only so many and that was

it? How much did you charge for people to come to the show?

Was it a variety show, did you have dinner, drinks, dancing, what?

I was so impressed on how much money you raised. That would about

cover our playground. How many people attended this function?

If you can't answer the questions, could you direct me to the person who

did all the wonderful work? We have a fundraising meeting on Monday

at 4:30 p.m. and I would love to report back to them about this.

We are applying for grants and such, but I feel if we can have one "big"

thing that that could help make people aware of this playground and get

done with the fundraising early. Thanks for your input Kass and your

help in this matter.

Nerenhausen mom to Leah (who really needs this playground and unfortunately

the City of Appleton can't contribute funding right now, bummer, huh.)

Kass wrote:

waislandgirl@... wrote:

I'm wondering how many of

our mito kids do have extremely high ketone body levels when under

stress/illness? Have many of you had urinary organic acids

done when ill?

If so, how high were the ketone bodies (3-OH-butyric acid and acetoacetic

acid)? I'm just curious.....

Dena

This is all so interesting. Madison was a heavy drinker (sounds bad!!

LOL) when she was younger, so much so that we did check for diabetes at

one point. Her therapists just marveled at how much she could put

away, and she always had a drink in hand. At one point this decreased

to a more normal level, and interestingly, this was also the time period

where her unusual body odor disappeared for a little while. It all

came back in full force a few months later, and then only when she began

having swallowing difficulties did the fluid intake reduce again.

We have documented Madison spilling ketones regularly, especially during

stressful times for her. We have only done lab work once when she

was ill, after a strange spell she had last May (went pale, was not sweating,

vomited, was unresponsive, and then went to sleep immediatly). We

thought she just had a stomach bug or something (this was after her mito

dx, but the first time her heat intolerance reared its head), so took her

home and did not see the doctor till the next day. By that time she

was reasonably responsive, still didn't feel great but was much better.

Her ped wanted to draw labs "just to see" what they looked like when she

was not 100%, but did not really expect there to be anything significant.

Blood work came back with all kinds of abnormalities (Glucose was low,

creatine was low, sodium was on the bottom of the ref ranges, chloride

was at the bottom of ref ranges, carbon dioxide was low, and she had major

ketone spillage in her urine sample), but most significant was her blood

acetone level, which was 19.7 (ref range 0.0-2.0 with 20 being toxic).

My understanding was that the blood acetone was what the ketones turned

into when they started building in the blood when they were unable to flush

it all through the kidneys. Her ped was shocked that she was not

in a coma, and that these numbers were more than 24 hours after she was

at her worst. Only explanation has been that she is likely in this

state regularly and her body has learned to cope with it, even though it

really should not.

Dr. Cohen was consulted about it, and basically the doc's all told me

that I can "never let this happen again"!! Just a little pressure

there!! Concensus is that in her case exercise and heat intolerance

are the precipitators (atleast the ones I have some control over) so she

is on heat and exercise restrictions to try and avoid another episode.

Additionally we attempt to limit things so as to not stress her system

(less time at school, regular bedtime and making sure she gets enough rest,

etc). Seems to be the only thing we can do at this point.

BIG hugs,

Kass

PS...thanks to EVERYONE for your responses to my "stress reaction" post!!

I'm backlogged and trying to catch up!!!

Please contact mito-owner with any problems or

questions.

[Guest guest]

Hi Kass:

Off subject of mito here and need to ask you a few questions regarding

the fund raiser down in Texas. We are in the process of fundraising

for a fully accessible playground here in Appleton, WI. Scheduled

to be built 2003. The park will cost approximately $175,000.

Most for the rubberized surfacing. You had done a raffle for a car.

How much were the tickets? Did you sell only so many and that was

it? How much did you charge for people to come to the show?

Was it a variety show, did you have dinner, drinks, dancing, what?

I was so impressed on how much money you raised. That would about

cover our playground. How many people attended this function?

If you can't answer the questions, could you direct me to the person who

did all the wonderful work? We have a fundraising meeting on Monday

at 4:30 p.m. and I would love to report back to them about this.

We are applying for grants and such, but I feel if we can have one "big"

thing that that could help make people aware of this playground and get

done with the fundraising early. Thanks for your input Kass and your

help in this matter.

Nerenhausen mom to Leah (who really needs this playground and unfortunately

the City of Appleton can't contribute funding right now, bummer, huh.)

Kass wrote:

waislandgirl@... wrote:

I'm wondering how many of

our mito kids do have extremely high ketone body levels when under

stress/illness? Have many of you had urinary organic acids

done when ill?

If so, how high were the ketone bodies (3-OH-butyric acid and acetoacetic

acid)? I'm just curious.....

Dena

This is all so interesting. Madison was a heavy drinker (sounds bad!!

LOL) when she was younger, so much so that we did check for diabetes at

one point. Her therapists just marveled at how much she could put

away, and she always had a drink in hand. At one point this decreased

to a more normal level, and interestingly, this was also the time period

where her unusual body odor disappeared for a little while. It all

came back in full force a few months later, and then only when she began

having swallowing difficulties did the fluid intake reduce again.

We have documented Madison spilling ketones regularly, especially during

stressful times for her. We have only done lab work once when she

was ill, after a strange spell she had last May (went pale, was not sweating,

vomited, was unresponsive, and then went to sleep immediatly). We

thought she just had a stomach bug or something (this was after her mito

dx, but the first time her heat intolerance reared its head), so took her

home and did not see the doctor till the next day. By that time she

was reasonably responsive, still didn't feel great but was much better.

Her ped wanted to draw labs "just to see" what they looked like when she

was not 100%, but did not really expect there to be anything significant.

Blood work came back with all kinds of abnormalities (Glucose was low,

creatine was low, sodium was on the bottom of the ref ranges, chloride

was at the bottom of ref ranges, carbon dioxide was low, and she had major

ketone spillage in her urine sample), but most significant was her blood

acetone level, which was 19.7 (ref range 0.0-2.0 with 20 being toxic).

My understanding was that the blood acetone was what the ketones turned

into when they started building in the blood when they were unable to flush

it all through the kidneys. Her ped was shocked that she was not

in a coma, and that these numbers were more than 24 hours after she was

at her worst. Only explanation has been that she is likely in this

state regularly and her body has learned to cope with it, even though it

really should not.

Dr. Cohen was consulted about it, and basically the doc's all told me

that I can "never let this happen again"!! Just a little pressure

there!! Concensus is that in her case exercise and heat intolerance

are the precipitators (atleast the ones I have some control over) so she

is on heat and exercise restrictions to try and avoid another episode.

Additionally we attempt to limit things so as to not stress her system

(less time at school, regular bedtime and making sure she gets enough rest,

etc). Seems to be the only thing we can do at this point.

BIG hugs,

Kass

PS...thanks to EVERYONE for your responses to my "stress reaction" post!!

I'm backlogged and trying to catch up!!!

Please contact mito-owner with any problems or

questions.