dehydration

[Guest guest]

Hi all :-)

Does anyone have any references I can get my hands on about the

potential effects of even mild dehydration in kids with mito????? I

know I have heard that they are at greater risk of problems (thinking I

read it can lead to acidosis) and know that at even a mild level its

been known to make Madison almost non-responsive and totally floppy. My

GI doc apparently needs some convincing that this is an issue that needs

to be dealt with (she is chronically dehydrated and spilling

Ketones...which I think are related). Any help is appreciated.

BIG hugs,

Kass, mom to Chance(7) and Madison(4)-unspecified mito, and Abby(3)

[Guest guest]

Kass

That is information that I could definately use too. If you find anything out please let me know too.

Alison

dehydration

Hi all :-)Does anyone have any references I can get my hands on about thepotential effects of even mild dehydration in kids with mito????? Iknow I have heard that they are at greater risk of problems (thinking Iread it can lead to acidosis) and know that at even a mild level itsbeen known to make Madison almost non-responsive and totally floppy. MyGI doc apparently needs some convincing that this is an issue that needsto be dealt with (she is chronically dehydrated and spillingKetones...which I think are related). Any help is appreciated.BIG hugs,Kass, mom to Chance(7) and Madison(4)-unspecified mito, and Abby(3)http://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions.

[Guest guest]

Dear Kass:

I thought there was an article from the last newsletter from the UMDF. In it

they spoke about acute illness and ways to

treat them. Plus one of the things mentioned as about dehydration. I know with

Leah if she starts throwing up more than

three times in an hour we need to get her in on an iv. Our ped is very good

about this. It may depend on the type of

mito; not sure. But may be see if it is in the UMDF section.

mom to Leah

Kass wrote:

> Hi all :-)

>

> Does anyone have any references I can get my hands on about the

> potential effects of even mild dehydration in kids with mito????? I

> know I have heard that they are at greater risk of problems (thinking I

> read it can lead to acidosis) and know that at even a mild level its

> been known to make Madison almost non-responsive and totally floppy. My

> GI doc apparently needs some convincing that this is an issue that needs

> to be dealt with (she is chronically dehydrated and spilling

> Ketones...which I think are related). Any help is appreciated.

>

> BIG hugs,

> Kass, mom to Chance(7) and Madison(4)-unspecified mito, and Abby(3)

>

>

> http://www.umdf.org/support/listpolicy.html - please contact

mito-owner with any problems or questions.

>

>

[Guest guest]

Kass wrote:

> Does anyone have any references I can get my hands on about the

> potential effects of even mild dehydration in kids with mito?????

Check out the last UMDF newsletter for the article that doctor Cohen wrote. It

specifically deals with this issue.

Jeannine

[Guest guest]

If I find anything really good, I'll pass it along hun!!!

BIG hugs,

Kass

The Boettchers wrote:

KassThat

is information that I could definately use too. If you find anything out

please let me know too.Alison

[Guest guest]

Thanks ....will try to get my hands on the article.

Basically what is throwing my docs here for a loop is that this is not

dehydration related to illness, but rather chronic dehydration due to Madison's

swallowing dysphagia.

Basically, the scenario we have happening here is this......Madison

is having to consciously protect her airway (the best we can tell) and

while she IS protecting it, it is taking a bit of energy which she is already

in short supply of. So, both eating and drinking slowly diminish,

with her drinking diminishing more quickly because it takes more energy

to protect the airway from liquids than from solids. As she drinks

less, both her appetite and energy level are compromised, so she begins

eating less, she has even less energy from the combo of mild dehydration

and not getting enough calories, and eats and drinks less and less until

we get to the point we were at in November. When we went in for GI

testing in November her eating and drinking were so low our GI doc was

convinced we had to do the g-tube ASAP. However, while she was in

the hospital for the GI testing, they IV hydrated her due to her needing

to fast for the endoscopy. Took a bag and a half of fluids and 12

hours for her to have any output at all at that time. However, 3

days later, she was suddenly eating and drinking again enough to sustain

her!!! Took me a day or two to figure out what had happened, and

when it dawned on me it made sense. Basically, by rehydrating her,

we had stabilized her system enough to allow her to get some energy back

which allowed her to have enough to go back to protecting her airway!!!!

We ended up having a good 4-6 weeks of her sustaining herself, gaining

weight and remaining hydrated before we began to see it slipping again.

While it took 7 months last year for her to get to a critical level, we

are fast approaching that place again after only four months this time.

I worry less about her eating because thankfully we have some weight

to "spare" if you will. She is currently one standard deviation above

her height in weight and she is not losing at this time. However,

I worry a great deal about her hydration levels and have slowly watched

her return to a point where it is physcially obvious (wrinkled lips, blotchy

hands in addition to too few diapers a day). We are not talking anything

probably more than mild dehydration, however it affects so many other things

when she is dehydrated. We have already had two incidents of her

becoming mildly dehydrated from illness that left her unresponsive and

a blob, so we know that when she hits a certain level (and in her its within

what the doctors would consider mild) she is seriously affected by it.

SO, my theory at the moment is this. There isn't any question

that she is dehydrated right now, so she is not at her optimum. We

have only just begun the supplements (CoQ10 and Carnitor) but I feel that

we will be unable to truly see the full effects of them until she is at

her optimum, and may well not see an improvement in the dysphagia (if there

is to be any) if she is already in a compromised state. We know that

we can get her to the optimum state simply by rehydrating her, so it seems

to me (and once I have explained this to our doctors here they agree) we

do this rather simple thing (IV hydrate her) and then know that we are

gonna see all that the supplements are capable of doing. I know there

is a slim chance that the supplements are gonna make this problem disappear

(the dysphagia), however, would feel foolish if we did not try it just

in case it makes a big difference for her. Its out of the realm of

regular though, so the docs here are just not sure what to make of it,

or how to even make it happen. They seem to agree that the theory

makes sense, just keep pushing it off on one of her other doctors to make

it happen, and all are acting as though I am asking for some kind of major

surgury or something...LOL. FRUSTRATING!!!!

I was desperatly trying to not to have to bother Dr. Cohen again and

thought maybe there would be something I could show our GI doc that links

the hydration issue and mito. I'll check out the article, and while

the GI doc may still feel like he needs to speak with Dr. Cohen, atleast

he will have something that might explain things better than I am apparently

capable of<grin>.

THANKS for the help!!!

BIG hugs,

Kass

Sorensen wrote:

Dear Kass:

I thought there was an article from the last newsletter from the

UMDF. In it they spoke about acute illness and ways to treat them.

Plus one of the things mentioned as about dehydration. I know with

Leah if she starts throwing up more than three times in an hour we need

to get her in on an iv. Our ped is very good about this. It

may depend on the type of mito; not sure. But may be see if it is

in the UMDF section.

mom to Leah

[Guest guest]

Kass

You and I have come to similar understandings of our children in the past while. It was recently that I told 's ped. that I feel that we push him far too hard by not rehydrating him with an IV because clinically he is only "mildly dehydrated". Mildly dehydrated with makes him retch and retch, seizures are increased etc. I have felt this way for a while but I found it an awkward position. My ped. whom I adore would check out and say he still had a bit of saliva etc. and I didn't want to look like some idiot by saying "please poke him anyway". is due to get a gtube next Friday I really hope that this will help a bit when he is refusing to drink or vomiting as we can run fluids in slowly over night. I also believe when gets mildly dehydrated that his illness periods last about 3 times as long as when we IV rehydrate and he "bounces" back quicker.

Good luck

Re: dehydration

Thanks ....will try to get my hands on the article. Basically what is throwing my docs here for a loop is that this is not dehydration related to illness, but rather chronic dehydration due to Madison's swallowing dysphagia. Basically, the scenario we have happening here is this......Madison is having to consciously protect her airway (the best we can tell) and while she IS protecting it, it is taking a bit of energy which she is already in short supply of. So, both eating and drinking slowly diminish, with her drinking diminishing more quickly because it takes more energy to protect the airway from liquids than from solids. As she drinks less, both her appetite and energy level are compromised, so she begins eating less, she has even less energy from the combo of mild dehydration and not getting enough calories, and eats and drinks less and less until we get to the point we were at in November. When we went in for GI testing in November her eating and drinking were so low our GI doc was convinced we had to do the g-tube ASAP. However, while she was in the hospital for the GI testing, they IV hydrated her due to her needing to fast for the endoscopy. Took a bag and a half of fluids and 12 hours for her to have any output at all at that time. However, 3 days later, she was suddenly eating and drinking again enough to sustain her!!! Took me a day or two to figure out what had happened, and when it dawned on me it made sense. Basically, by rehydrating her, we had stabilized her system enough to allow her to get some energy back which allowed her to have enough to go back to protecting her airway!!!! We ended up having a good 4-6 weeks of her sustaining herself, gaining weight and remaining hydrated before we began to see it slipping again. While it took 7 months last year for her to get to a critical level, we are fast approaching that place again after only four months this time. I worry less about her eating because thankfully we have some weight to "spare" if you will. She is currently one standard deviation above her height in weight and she is not losing at this time. However, I worry a great deal about her hydration levels and have slowly watched her return to a point where it is physcially obvious (wrinkled lips, blotchy hands in addition to too few diapers a day). We are not talking anything probably more than mild dehydration, however it affects so many other things when she is dehydrated. We have already had two incidents of her becoming mildly dehydrated from illness that left her unresponsive and a blob, so we know that when she hits a certain level (and in her its within what the doctors would consider mild) she is seriously affected by it. SO, my theory at the moment is this. There isn't any question that she is dehydrated right now, so she is not at her optimum. We have only just begun the supplements (CoQ10 and Carnitor) but I feel that we will be unable to truly see the full effects of them until she is at her optimum, and may well not see an improvement in the dysphagia (if there is to be any) if she is already in a compromised state. We know that we can get her to the optimum state simply by rehydrating her, so it seems to me (and once I have explained this to our doctors here they agree) we do this rather simple thing (IV hydrate her) and then know that we are gonna see all that the supplements are capable of doing. I know there is a slim chance that the supplements are gonna make this problem disappear (the dysphagia), however, would feel foolish if we did not try it just in case it makes a big difference for her. Its out of the realm of regular though, so the docs here are just not sure what to make of it, or how to even make it happen. They seem to agree that the theory makes sense, just keep pushing it off on one of her other doctors to make it happen, and all are acting as though I am asking for some kind of major surgury or something...LOL. FRUSTRATING!!!! I was desperatly trying to not to have to bother Dr. Cohen again and thought maybe there would be something I could show our GI doc that links the hydration issue and mito. I'll check out the article, and while the GI doc may still feel like he needs to speak with Dr. Cohen, atleast he will have something that might explain things better than I am apparently capable of<grin>. THANKS for the help!!! BIG hugs, Kass Sorensen wrote: Dear Kass: I thought there was an article from the last newsletter from the UMDF. In it they spoke about acute illness and ways to treat them. Plus one of the things mentioned as about dehydration. I know with Leah if she starts throwing up more than three times in an hour we need to get her in on an iv. Our ped is very good about this. It may depend on the type of mito; not sure. But may be see if it is in the UMDF section. mom to Leahhttp://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions.

[Guest guest]

This has always been something of a large concern for me with Miranda. Even though she does not have a confirmed mito disorder and she does have a gtube, it continues to be a problem. Whenever she gets sick the first thing to start is a high temp and vomiting. The last episode we had with this was just about 8 weeks ago. After spending the day in clinic on an IV her dr felt she would be ok to go home. She went home and promptly started to vomit as soon as we started the pedialyte, even at 10 ml an hour!! We took her to the ER and the dr there said he felt she was ok because "she wasn't dry enough yet" How stupid is that. So he sent her home. She barfed all the way home and I even called the hospital from my cell phone to tell them she was vomiting so badly. They said she will be fine. We get home and deal with a few more hours of vomiting and I finally get her ped on the phone who says he will meet me in the ER, He says,

yep, she is dry, lets admit her. This was not the first time it has happened.

So now since our trip to see Dr Cohen we were told not to let her fast at all under any circumstances. I told her ped this and he agreed we will not let this happen again. I told him its not like I enjoy seeing my child in the hospital with an IV but for heavens sake, was all her suffering not worse??? Miranda does have a mediport so getting an IV going is really no big deal. So I was told for now on things will be handled differently.

Re: dehydration

Thanks ....will try to get my hands on the article. Basically what is throwing my docs here for a loop is that this is not dehydration related to illness, but rather chronic dehydration due to Madison's swallowing dysphagia. Basically, the scenario we have happening here is this......Madison is having to consciously protect her airway (the best we can tell) and while she IS protecting it, it is taking a bit of energy which she is already in short supply of. So, both eating and drinking slowly diminish, with her drinking diminishing more quickly because it takes more energy to protect the airway from liquids than from solids. As she drinks less, both her appetite and energy level are compromised, so she begins eating less, she has even less energy from the combo of mild dehydration and not getting enough calories, and eats and drinks less and less until we get to the point we were at in November. When we went in for GI testing in November her eating and drinking were so low our GI doc was convinced we had to do the g-tube ASAP. However, while she was in the hospital for the GI testing, they IV hydrated her due to her needing to fast for the endoscopy. Took a bag and a half of fluids and 12 hours for her to have any output at all at that time. However, 3 days later, she was suddenly eating and drinking again enough to sustain her!!! Took me a day or two to figure out what had happened, and when it dawned on me it made sense. Basically, by rehydrating her, we had stabilized her system enough to allow her to get some energy back which allowed her to have enough to go back to protecting her airway!!!! We ended up having a good 4-6 weeks of her sustaining herself, gaining weight and remaining hydrated before we began to see it slipping again. While it took 7 months last year for her to get to a critical level, we are fast approaching that place again after only four months this time. I worry less about her eating because thankfully we have some weight to "spare" if you will. She is currently one standard deviation above her height in weight and she is not losing at this time. However, I worry a great deal about her hydration levels and have slowly watched her return to a point where it is physcially obvious (wrinkled lips, blotchy hands in addition to too few diapers a day). We are not talking anything probably more than mild dehydration, however it affects so many other things when she is dehydrated. We have already had two incidents of her becoming mildly dehydrated from illness that left her unresponsive and a blob, so we know that when she hits a certain level (and in her its within what the doctors would consider mild) she is seriously affected by it. SO, my theory at the moment is this. There isn't any question that she is dehydrated right now, so she is not at her optimum. We have only just begun the supplements (CoQ10 and Carnitor) but I feel that we will be unable to truly see the full effects of them until she is at her optimum, and may well not see an improvement in the dysphagia (if there is to be any) if she is already in a compromised state. We know that we can get her to the optimum state simply by rehydrating her, so it seems to me (and once I have explained this to our doctors here they agree) we do this rather simple thing (IV hydrate her) and then know that we are gonna see all that the supplements are capable of doing. I know there is a slim chance that the supplements are gonna make this problem disappear (the dysphagia), however, would feel foolish if we did not try it just in case it makes a big difference for her. Its out of the realm of regular though, so the docs here are just not sure what to make of it, or how to even make it happen. They seem to agree that the theory makes sense, just keep pushing it off on one of her other doctors to make it happen, and all are acting as though I am asking for some kind of major surgury or something...LOL. FRUSTRATING!!!! I was desperatly trying to not to have to bother Dr. Cohen again and thought maybe there would be something I could show our GI doc that links the hydration issue and mito. I'll check out the article, and while the GI doc may still feel like he needs to speak with Dr. Cohen, atleast he will have something that might explain things better than I am apparently capable of<grin>. THANKS for the help!!! BIG hugs, Kass Sorensen wrote: Dear Kass: I thought there was an article from the last newsletter from the UMDF. In it they spoke about acute illness and ways to treat them. Plus one of the things mentioned as about dehydration. I know with Leah if she starts throwing up more than three times in an hour we need to get her in on an iv. Our ped is very good about this. It may depend on the type of mito; not sure. But may be see if it is in the UMDF section. mom to Leahhttp://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions.

[Guest guest]

Thanks a ton for the confirmation that I am not crazy!!! LOL

I think you and I are definatly seeing the same thing, particularly

how much the IV hydration helps them!! Why its so hard to get something

like this done is difficult to understand, but possibly I am missing something.

I think whats kept us from pushing for it before was that Madison does

not get physically ill with it, it just slowly weakens her. I *see*

the difference it makes, but the doctors have a harder time because they

see her so infrequently, they absolutly have to take my word that it is

causing her harm, even if it is not something easily seen by them.

We will get it figured out eventually!!!

Thanks again for the support :-)

BIG hugs,

Kass

The Boettchers wrote:

KassYou

and I have come to similar understandings of our children in the past while.

It was recently that I told 's ped. that I feel that we push him

far too hard by not rehydrating him with an IV because clinically he is

only "mildly dehydrated". Mildly dehydrated with makes him retch

and retch, seizures are increased etc. I have felt this way for a while

but I found it an awkward position. My ped. whom I adore would check

out and say he still had a bit of saliva etc. and I didn't want to look

like some idiot by saying "please poke him anyway". is due to get

a gtube next Friday I really hope that this will help a bit when he is

refusing to drink or vomiting as we can run fluids in slowly over night.

I also believe when gets mildly dehydrated that his illness periods

last about 3 times as long as when we IV rehydrate and he "bounces" back

quicker.Good luck