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,

did they do a culture and sensitivity while at the hospital? you should be able to get the 24's today. it takes 48 hr. for the sensitivity part. it could be from a UTI. our daughter has "neurogenic" bladder. same as said, her nerves are not telling the bladder to work. makes sense since the mito has destroyed all of her gray matter in her brain and spinal column, and this is where the ' controls ' are.she just lost all function in her bladder a few months ago and we have a foley too but its placed through her abdomen, its called a supra-pubic tube. hang in there,

Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol

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,

did they do a culture and sensitivity while at the hospital? you should be able to get the 24's today. it takes 48 hr. for the sensitivity part. it could be from a UTI. our daughter has "neurogenic" bladder. same as said, her nerves are not telling the bladder to work. makes sense since the mito has destroyed all of her gray matter in her brain and spinal column, and this is where the ' controls ' are.she just lost all function in her bladder a few months ago and we have a foley too but its placed through her abdomen, its called a supra-pubic tube. hang in there,

Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol

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,

did they do a culture and sensitivity while at the hospital? you should be able to get the 24's today. it takes 48 hr. for the sensitivity part. it could be from a UTI. our daughter has "neurogenic" bladder. same as said, her nerves are not telling the bladder to work. makes sense since the mito has destroyed all of her gray matter in her brain and spinal column, and this is where the ' controls ' are.she just lost all function in her bladder a few months ago and we have a foley too but its placed through her abdomen, its called a supra-pubic tube. hang in there,

Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol

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Both my girls are going in for a urodynamic study next month. Brenna

2 yrs has gone up to 32 hr with out a wet diaper and Hailey 4 yrs around

26 hrs. It used to be only during illness or heat that this would

happen, but now it is happening to Brenna more and more. This week

she went 20 hrs and did about the same yesterday.

We have orders to cath after 12 hrs without going, but have not done

it yet. The other weird thing is they don't complain of pain or discomfort

during these times. Right now Brenna is at 12 1/2 hrs, I am keeping

my fingers crossed that she goes soon.

One thing that help our docs & me was to just track when they go

each day. Sorry, I don't have any answers to your questions, but

wish you the best in finding out what is going on.

Kerry

Plymouth, MA

Hailey 4 yrs Mito & FOD

Brenna 2 yrs Mito & FOD

Plant wrote:

I spent last night in the ER with my 15

year old (who is not currently

diagnosed with mito). He came home from school on Thursday

and said

that he had some trouble urinating. I thought it was just

a minor thing

and he didn't seem too concerned. We would send a urine sample

in to

the pediatrician in the morning. Well, I guess that I should

have

realized that it had to be very serious for a 15 year old boy to

mention

some like this to his mother!! What he really meant was his

bladder was

full because he hadn't been able to urinate all day. At 1

AM he woke me

up and asked to go to the ER. His bladder was very full--NEARLY

2

liters. He was discharged from the ER at 5 AM with a foley

that they

thought it would be OK to keep til Monday because they weren't

able to

get him into the local urologist on Friday. and I totally

disagreed with keep the darn thing til Monday.

He saw the urologist in the afternoon. They filled his bladder

and took

out the cath hoping that he would be able to go on his own and

luckily

he could. He will go back next week. had his tonsils

and adenoids

taken out less than a month ago and I am afraid that the stress

of the

surgery and all of the pain meds (that are detoxed via glutathione

which

is the same antioxidant that services the mitochondria) might have

pushed him into mito (he has other soft signs). His two brothers

both

tested low for glutathione. I am afraid that all three boys

have mito.

How common is urinary retention in mito? And what other things could

cause urinary retention in a "healthy" 15 year old boy?

thanks,

Please contact mito-owner with any problems or questions.

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Both my girls are going in for a urodynamic study next month. Brenna

2 yrs has gone up to 32 hr with out a wet diaper and Hailey 4 yrs around

26 hrs. It used to be only during illness or heat that this would

happen, but now it is happening to Brenna more and more. This week

she went 20 hrs and did about the same yesterday.

We have orders to cath after 12 hrs without going, but have not done

it yet. The other weird thing is they don't complain of pain or discomfort

during these times. Right now Brenna is at 12 1/2 hrs, I am keeping

my fingers crossed that she goes soon.

One thing that help our docs & me was to just track when they go

each day. Sorry, I don't have any answers to your questions, but

wish you the best in finding out what is going on.

Kerry

Plymouth, MA

Hailey 4 yrs Mito & FOD

Brenna 2 yrs Mito & FOD

Plant wrote:

I spent last night in the ER with my 15

year old (who is not currently

diagnosed with mito). He came home from school on Thursday

and said

that he had some trouble urinating. I thought it was just

a minor thing

and he didn't seem too concerned. We would send a urine sample

in to

the pediatrician in the morning. Well, I guess that I should

have

realized that it had to be very serious for a 15 year old boy to

mention

some like this to his mother!! What he really meant was his

bladder was

full because he hadn't been able to urinate all day. At 1

AM he woke me

up and asked to go to the ER. His bladder was very full--NEARLY

2

liters. He was discharged from the ER at 5 AM with a foley

that they

thought it would be OK to keep til Monday because they weren't

able to

get him into the local urologist on Friday. and I totally

disagreed with keep the darn thing til Monday.

He saw the urologist in the afternoon. They filled his bladder

and took

out the cath hoping that he would be able to go on his own and

luckily

he could. He will go back next week. had his tonsils

and adenoids

taken out less than a month ago and I am afraid that the stress

of the

surgery and all of the pain meds (that are detoxed via glutathione

which

is the same antioxidant that services the mitochondria) might have

pushed him into mito (he has other soft signs). His two brothers

both

tested low for glutathione. I am afraid that all three boys

have mito.

How common is urinary retention in mito? And what other things could

cause urinary retention in a "healthy" 15 year old boy?

thanks,

Please contact mito-owner with any problems or questions.

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Both my girls are going in for a urodynamic study next month. Brenna

2 yrs has gone up to 32 hr with out a wet diaper and Hailey 4 yrs around

26 hrs. It used to be only during illness or heat that this would

happen, but now it is happening to Brenna more and more. This week

she went 20 hrs and did about the same yesterday.

We have orders to cath after 12 hrs without going, but have not done

it yet. The other weird thing is they don't complain of pain or discomfort

during these times. Right now Brenna is at 12 1/2 hrs, I am keeping

my fingers crossed that she goes soon.

One thing that help our docs & me was to just track when they go

each day. Sorry, I don't have any answers to your questions, but

wish you the best in finding out what is going on.

Kerry

Plymouth, MA

Hailey 4 yrs Mito & FOD

Brenna 2 yrs Mito & FOD

Plant wrote:

I spent last night in the ER with my 15

year old (who is not currently

diagnosed with mito). He came home from school on Thursday

and said

that he had some trouble urinating. I thought it was just

a minor thing

and he didn't seem too concerned. We would send a urine sample

in to

the pediatrician in the morning. Well, I guess that I should

have

realized that it had to be very serious for a 15 year old boy to

mention

some like this to his mother!! What he really meant was his

bladder was

full because he hadn't been able to urinate all day. At 1

AM he woke me

up and asked to go to the ER. His bladder was very full--NEARLY

2

liters. He was discharged from the ER at 5 AM with a foley

that they

thought it would be OK to keep til Monday because they weren't

able to

get him into the local urologist on Friday. and I totally

disagreed with keep the darn thing til Monday.

He saw the urologist in the afternoon. They filled his bladder

and took

out the cath hoping that he would be able to go on his own and

luckily

he could. He will go back next week. had his tonsils

and adenoids

taken out less than a month ago and I am afraid that the stress

of the

surgery and all of the pain meds (that are detoxed via glutathione

which

is the same antioxidant that services the mitochondria) might have

pushed him into mito (he has other soft signs). His two brothers

both

tested low for glutathione. I am afraid that all three boys

have mito.

How common is urinary retention in mito? And what other things could

cause urinary retention in a "healthy" 15 year old boy?

thanks,

Please contact mito-owner with any problems or questions.

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,

Our 14 year old, Jill, has just developed unrinary problems. She has gone for her urodynamics test two weeks ago and it showed she is retaining urine. In Jill's case, she was constantly leaking and this is why we started looking into this. They said that the bladder muscle are not working properly and there are two mucsles that should work together which are not. A drug called dytropan has been prescribed for Jill. Although it is the muscles that are not working properly they also said it may be the nerves that are not functioning as well. Most of Jill's symptoms are neurological in nature so nerve problems make sense to me in Jill's case. She has never had any urinary problem until now.

Plant wrote:

I spent last night in the ER with my 15 year old (who is not currently diagnosed with mito). He came home from school on Thursday and said that he had some trouble urinating. I thought it was just a minor thing and he didn't seem too concerned. We would send a urine sample in to the pediatrician in the morning. Well, I guess that I should have realized that it had to be very serious for a 15 year old boy to mention some like this to his mother!! What he really meant was his bladder was full because he hadn't been able to urinate all day. At 1 AM he woke me up and asked to go to the ER. His bladder was very full--NEARLY 2 liters. He was discharged from the ER at 5 AM with a foley that they thought it would be OK to keep til Monday because they weren't able to get him into the local urologist

on Friday. and I totally disagreed with keep the darn thing til Monday. He saw the urologist in the afternoon. They filled his bladder and took out the cath hoping that he would be able to go on his own and luckily he could. He will go back next week. had his tonsils and adenoids taken out less than a month ago and I am afraid that the stress of the surgery and all of the pain meds (that are detoxed via glutathione which is the same antioxidant that services the mitochondria) might have pushed him into mito (he has other soft signs). His two brothers both tested low for glutathione. I am afraid that all three boys have mito.How common is urinary retention in mito? And what other things could cause urinary retention in a "healthy" 15 year old boy?thanks, Please contact mito-owner with any problems or questions.

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,

Our 14 year old, Jill, has just developed unrinary problems. She has gone for her urodynamics test two weeks ago and it showed she is retaining urine. In Jill's case, she was constantly leaking and this is why we started looking into this. They said that the bladder muscle are not working properly and there are two mucsles that should work together which are not. A drug called dytropan has been prescribed for Jill. Although it is the muscles that are not working properly they also said it may be the nerves that are not functioning as well. Most of Jill's symptoms are neurological in nature so nerve problems make sense to me in Jill's case. She has never had any urinary problem until now.

Plant wrote:

I spent last night in the ER with my 15 year old (who is not currently diagnosed with mito). He came home from school on Thursday and said that he had some trouble urinating. I thought it was just a minor thing and he didn't seem too concerned. We would send a urine sample in to the pediatrician in the morning. Well, I guess that I should have realized that it had to be very serious for a 15 year old boy to mention some like this to his mother!! What he really meant was his bladder was full because he hadn't been able to urinate all day. At 1 AM he woke me up and asked to go to the ER. His bladder was very full--NEARLY 2 liters. He was discharged from the ER at 5 AM with a foley that they thought it would be OK to keep til Monday because they weren't able to get him into the local urologist

on Friday. and I totally disagreed with keep the darn thing til Monday. He saw the urologist in the afternoon. They filled his bladder and took out the cath hoping that he would be able to go on his own and luckily he could. He will go back next week. had his tonsils and adenoids taken out less than a month ago and I am afraid that the stress of the surgery and all of the pain meds (that are detoxed via glutathione which is the same antioxidant that services the mitochondria) might have pushed him into mito (he has other soft signs). His two brothers both tested low for glutathione. I am afraid that all three boys have mito.How common is urinary retention in mito? And what other things could cause urinary retention in a "healthy" 15 year old boy?thanks, Please contact mito-owner with any problems or questions.

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Guest guest

,

Our 14 year old, Jill, has just developed unrinary problems. She has gone for her urodynamics test two weeks ago and it showed she is retaining urine. In Jill's case, she was constantly leaking and this is why we started looking into this. They said that the bladder muscle are not working properly and there are two mucsles that should work together which are not. A drug called dytropan has been prescribed for Jill. Although it is the muscles that are not working properly they also said it may be the nerves that are not functioning as well. Most of Jill's symptoms are neurological in nature so nerve problems make sense to me in Jill's case. She has never had any urinary problem until now.

Plant wrote:

I spent last night in the ER with my 15 year old (who is not currently diagnosed with mito). He came home from school on Thursday and said that he had some trouble urinating. I thought it was just a minor thing and he didn't seem too concerned. We would send a urine sample in to the pediatrician in the morning. Well, I guess that I should have realized that it had to be very serious for a 15 year old boy to mention some like this to his mother!! What he really meant was his bladder was full because he hadn't been able to urinate all day. At 1 AM he woke me up and asked to go to the ER. His bladder was very full--NEARLY 2 liters. He was discharged from the ER at 5 AM with a foley that they thought it would be OK to keep til Monday because they weren't able to get him into the local urologist

on Friday. and I totally disagreed with keep the darn thing til Monday. He saw the urologist in the afternoon. They filled his bladder and took out the cath hoping that he would be able to go on his own and luckily he could. He will go back next week. had his tonsils and adenoids taken out less than a month ago and I am afraid that the stress of the surgery and all of the pain meds (that are detoxed via glutathione which is the same antioxidant that services the mitochondria) might have pushed him into mito (he has other soft signs). His two brothers both tested low for glutathione. I am afraid that all three boys have mito.How common is urinary retention in mito? And what other things could cause urinary retention in a "healthy" 15 year old boy?thanks, Please contact mito-owner with any problems or questions.

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:

What do they expect from using dytropan? I have asked if there

is anything else besides having to cath after 12 hr without urine and was

told there was nothing and this was what needed to be done. We have

been able to avoid doing it at home until now, we actually have a nurse

on her way to our house now because Brenna has not gone in 15 hrs.

I still am holding out hope that she will go before she gets here.

Best of luck trying this med ~ Please let me/us know how it goes and

thanks for sharing this info.

Kerry

McGarry wrote:

, Our 14 year old, Jill, has just

developed unrinary problems. She has gone for her urodynamics test two

weeks ago and it showed she is retaining urine. In Jill's case, she was

constantly leaking and this is why we started looking into this. They said

that the bladder muscle are not working properly and there are two mucsles

that should work together which are not. A drug called dytropan has been

prescribed for Jill. Although it is the muscles that are not working properly

they also said it may be the nerves that are not functioning as well. Most

of Jill's symptoms are neurological in nature so nerve problems make sense

to me in Jill's case. She has never had any urinary problem until now.

Plant wrote:

I

spent last night in the ER with my 15 year old (who is not currently

diagnosed with mito). He came home from school on Thursday

and said

that he had some trouble urinating. I thought it was just

a minor thing

and he didn't seem too concerned. We would send a urine sample

in to

the pediatrician in the morning. Well, I guess that I should

have

realized that it had to be very serious for a 15 year old boy to

mention

some like this to his mother!! What he really meant was his

bladder was

full because he hadn't been able to urinate all day. At 1

AM he woke me

up and asked to go to the ER. His bladder was very full--NEARLY

2

liters. He was discharged from the ER at 5 AM with a foley

that they

thought it would be OK to keep til Monday because they weren't

able to

get him into the local urologist on Friday. and I totally

disagreed with keep the darn thing til Monday.

He saw the urologist in the afternoon. They filled his bladder

and took

out the cath hoping that he would be able to go on his own and

luckily

he could. He will go back next week. had his tonsils

and adenoids

taken out less than a month ago and I am afraid that the stress

of the

surgery and all of the pain meds (that are detoxed via glutathione

which

is the same antioxidant that services the mitochondria) might have

pushed him into mito (he has other soft signs). His two brothers

both

tested low for glutathione. I am afraid that all three boys

have mito.

How common is urinary retention in mito? And what other things could

cause urinary retention in a "healthy" 15 year old boy?

thanks,

Please contact mito-owner with any problems or questions.

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Guest guest

:

What do they expect from using dytropan? I have asked if there

is anything else besides having to cath after 12 hr without urine and was

told there was nothing and this was what needed to be done. We have

been able to avoid doing it at home until now, we actually have a nurse

on her way to our house now because Brenna has not gone in 15 hrs.

I still am holding out hope that she will go before she gets here.

Best of luck trying this med ~ Please let me/us know how it goes and

thanks for sharing this info.

Kerry

McGarry wrote:

, Our 14 year old, Jill, has just

developed unrinary problems. She has gone for her urodynamics test two

weeks ago and it showed she is retaining urine. In Jill's case, she was

constantly leaking and this is why we started looking into this. They said

that the bladder muscle are not working properly and there are two mucsles

that should work together which are not. A drug called dytropan has been

prescribed for Jill. Although it is the muscles that are not working properly

they also said it may be the nerves that are not functioning as well. Most

of Jill's symptoms are neurological in nature so nerve problems make sense

to me in Jill's case. She has never had any urinary problem until now.

Plant wrote:

I

spent last night in the ER with my 15 year old (who is not currently

diagnosed with mito). He came home from school on Thursday

and said

that he had some trouble urinating. I thought it was just

a minor thing

and he didn't seem too concerned. We would send a urine sample

in to

the pediatrician in the morning. Well, I guess that I should

have

realized that it had to be very serious for a 15 year old boy to

mention

some like this to his mother!! What he really meant was his

bladder was

full because he hadn't been able to urinate all day. At 1

AM he woke me

up and asked to go to the ER. His bladder was very full--NEARLY

2

liters. He was discharged from the ER at 5 AM with a foley

that they

thought it would be OK to keep til Monday because they weren't

able to

get him into the local urologist on Friday. and I totally

disagreed with keep the darn thing til Monday.

He saw the urologist in the afternoon. They filled his bladder

and took

out the cath hoping that he would be able to go on his own and

luckily

he could. He will go back next week. had his tonsils

and adenoids

taken out less than a month ago and I am afraid that the stress

of the

surgery and all of the pain meds (that are detoxed via glutathione

which

is the same antioxidant that services the mitochondria) might have

pushed him into mito (he has other soft signs). His two brothers

both

tested low for glutathione. I am afraid that all three boys

have mito.

How common is urinary retention in mito? And what other things could

cause urinary retention in a "healthy" 15 year old boy?

thanks,

Please contact mito-owner with any problems or questions.

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Guest guest

:

What do they expect from using dytropan? I have asked if there

is anything else besides having to cath after 12 hr without urine and was

told there was nothing and this was what needed to be done. We have

been able to avoid doing it at home until now, we actually have a nurse

on her way to our house now because Brenna has not gone in 15 hrs.

I still am holding out hope that she will go before she gets here.

Best of luck trying this med ~ Please let me/us know how it goes and

thanks for sharing this info.

Kerry

McGarry wrote:

, Our 14 year old, Jill, has just

developed unrinary problems. She has gone for her urodynamics test two

weeks ago and it showed she is retaining urine. In Jill's case, she was

constantly leaking and this is why we started looking into this. They said

that the bladder muscle are not working properly and there are two mucsles

that should work together which are not. A drug called dytropan has been

prescribed for Jill. Although it is the muscles that are not working properly

they also said it may be the nerves that are not functioning as well. Most

of Jill's symptoms are neurological in nature so nerve problems make sense

to me in Jill's case. She has never had any urinary problem until now.

Plant wrote:

I

spent last night in the ER with my 15 year old (who is not currently

diagnosed with mito). He came home from school on Thursday

and said

that he had some trouble urinating. I thought it was just

a minor thing

and he didn't seem too concerned. We would send a urine sample

in to

the pediatrician in the morning. Well, I guess that I should

have

realized that it had to be very serious for a 15 year old boy to

mention

some like this to his mother!! What he really meant was his

bladder was

full because he hadn't been able to urinate all day. At 1

AM he woke me

up and asked to go to the ER. His bladder was very full--NEARLY

2

liters. He was discharged from the ER at 5 AM with a foley

that they

thought it would be OK to keep til Monday because they weren't

able to

get him into the local urologist on Friday. and I totally

disagreed with keep the darn thing til Monday.

He saw the urologist in the afternoon. They filled his bladder

and took

out the cath hoping that he would be able to go on his own and

luckily

he could. He will go back next week. had his tonsils

and adenoids

taken out less than a month ago and I am afraid that the stress

of the

surgery and all of the pain meds (that are detoxed via glutathione

which

is the same antioxidant that services the mitochondria) might have

pushed him into mito (he has other soft signs). His two brothers

both

tested low for glutathione. I am afraid that all three boys

have mito.

How common is urinary retention in mito? And what other things could

cause urinary retention in a "healthy" 15 year old boy?

thanks,

Please contact mito-owner with any problems or questions.

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Thanks for the info Kass. The nurse did have to come and cath Brenna

this morning. She got 250 cc out after 15+ hrs.

Our urologist at last appointment said we had to cath Brenna daily.

Then while there she had a wet diaper and he said see you in 1 yr. A very

drastic change in one visit. Over the past 2 months Brenna is having urine

retention more and more. Before it was during illness & heat.

So far this week she went 20 hr on thurs, 12 + on Friday and then today.

It is our home nurse that is advocating for us to find answers. We

have not talked with the MD, but his nurse who scheduled the urodynamic

study on both girls. The thought about why they are not in pain is

that their bladder is getting stretched.

Hailey is on Kristalose for constipation. Brenna does not have constipation.

Just this week I am starting to change my mind about the whole wait

and it will come out ~ I am now getting afraid that by waiting 15 or 20

hrs we are probably doing more harm to her than by if we just did a cath.

The whole thing is overwhelming at this point. I have not done that

cathing yet, I do need to learn, but I am refusing to have anyone teach

me unless they actually need to be cathed. The orders we have from the

urologist is cath both girls if they go longer than 12 hrs.

Let us know how things go @ Mayo and again thanks for the info that

I will share with our nurse.

Kerry

Kass wrote:

Hey Kerry....hope you don't mind me jumping in here!!

Ditropan is an anti-spasmodic and works well for kids with incontinence

issues (like my Chance and Abby). In their case, rather than holding

too much urine, they both begin having bladder spasms, such that they would

wet themselves if they laughed or coughed long before they have as much

in their bladder as they should.

The only options our urologist gave us for Madison holding too much

was a med called Cardura, which relaxes the bladder neck (and theoretically

we hoped might allow her to release more easily) and an attempt at an every

two hour schedule....atleast having her try that frequently. Course

your girls are much younger so I am suspecting this part might be impossible.

Have they checked the girls for constipation by any chance?? This

can apparently play a big part in urological issues (in both directions,

those that hold too much AND those with incontinence issues). Along

with the meds my guys were given to try and address the urological issues,

2 of them are also now being treated for constipation as a part of our

effort to get some control.

We're honestly getting mixed results over here from what we're trying.

Chance (spasming bladder/incontinence issues) we're seeing very nice results

with the increased Ditropan and continuing the every 2 hour schedule.

As long as he gets his Ditropan he almost never has accidents, though we

have found that if a dose is missed, it comes back full force. He

IS back to having some days of burning and feeling like he needs to go

but cannot, so we'll need to address this when we get back to Mayo in March,

but so far its been pretty manageable. Abby (spasming bladder/incontinence

issues) we're seeing no change in with the Ditropan and the schedule unfortunatly,

though we might be able to increase the ditropan and see something more

so will discuss this in March. And finally, Miss Madison (holds too

much/goes infrequently/thickened bladder wall/frequent infections) we've

seen no improvements in with the med and schedule. She tries every

2 hours but there is just nothing coming out and while we were on Abby's

Wish trip this last week she went 24+ hours on a couple of occasions in

between going. This with major amounts of hydration too as I was

trying to avoid altitude sickness in all of us and was seriously pushing

the gatorade. I knew the stress of the trip might set things back,

and normally she doesn't go quite that long in between urinations, but

it was still not what I wanted to see. Probably silly, but I am still

holding out hope maybe we can come up with something that helps her.

Promise to share if we do!!!!

Just wondering, did the doctor say what his concerns were with the girls

retaining?? Wondering what damage could be caused if they are not

in pain ya know?? I think I (blindly) keep thinking that if Madison

is not hurting, maybe its not doing damage. Course, I know better

to some extent, but cannot help myself at the moment.

Good luck hun and know your in my thoughts and prayers.

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Home Page (http://home.swbell.net/mcpoop/index1.htm)

Updates (http://www.caringbridge.org/tx/mitowhat/)

United Mitochondrial Disease Foundation

(http://www.umdf.org)

"Life is not about the breaths we take, but the moments that take

our breath away" Unknown

kerry.tobin@... wrote:

:

What do they expect from using dytropan? I have asked if there

is anything else besides having to cath after 12 hr without urine and was

told there was nothing and this was what needed to be done. We have

been able to avoid doing it at home until now, we actually have a nurse

on her way to our house now because Brenna has not gone in 15 hrs.

I still am holding out hope that she will go before she gets here.

Best of luck trying this med ~ Please let me/us know how it goes and

thanks for sharing this info.

Kerry

Please contact mito-owner with any problems or questions.

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Thanks for the info Kass. The nurse did have to come and cath Brenna

this morning. She got 250 cc out after 15+ hrs.

Our urologist at last appointment said we had to cath Brenna daily.

Then while there she had a wet diaper and he said see you in 1 yr. A very

drastic change in one visit. Over the past 2 months Brenna is having urine

retention more and more. Before it was during illness & heat.

So far this week she went 20 hr on thurs, 12 + on Friday and then today.

It is our home nurse that is advocating for us to find answers. We

have not talked with the MD, but his nurse who scheduled the urodynamic

study on both girls. The thought about why they are not in pain is

that their bladder is getting stretched.

Hailey is on Kristalose for constipation. Brenna does not have constipation.

Just this week I am starting to change my mind about the whole wait

and it will come out ~ I am now getting afraid that by waiting 15 or 20

hrs we are probably doing more harm to her than by if we just did a cath.

The whole thing is overwhelming at this point. I have not done that

cathing yet, I do need to learn, but I am refusing to have anyone teach

me unless they actually need to be cathed. The orders we have from the

urologist is cath both girls if they go longer than 12 hrs.

Let us know how things go @ Mayo and again thanks for the info that

I will share with our nurse.

Kerry

Kass wrote:

Hey Kerry....hope you don't mind me jumping in here!!

Ditropan is an anti-spasmodic and works well for kids with incontinence

issues (like my Chance and Abby). In their case, rather than holding

too much urine, they both begin having bladder spasms, such that they would

wet themselves if they laughed or coughed long before they have as much

in their bladder as they should.

The only options our urologist gave us for Madison holding too much

was a med called Cardura, which relaxes the bladder neck (and theoretically

we hoped might allow her to release more easily) and an attempt at an every

two hour schedule....atleast having her try that frequently. Course

your girls are much younger so I am suspecting this part might be impossible.

Have they checked the girls for constipation by any chance?? This

can apparently play a big part in urological issues (in both directions,

those that hold too much AND those with incontinence issues). Along

with the meds my guys were given to try and address the urological issues,

2 of them are also now being treated for constipation as a part of our

effort to get some control.

We're honestly getting mixed results over here from what we're trying.

Chance (spasming bladder/incontinence issues) we're seeing very nice results

with the increased Ditropan and continuing the every 2 hour schedule.

As long as he gets his Ditropan he almost never has accidents, though we

have found that if a dose is missed, it comes back full force. He

IS back to having some days of burning and feeling like he needs to go

but cannot, so we'll need to address this when we get back to Mayo in March,

but so far its been pretty manageable. Abby (spasming bladder/incontinence

issues) we're seeing no change in with the Ditropan and the schedule unfortunatly,

though we might be able to increase the ditropan and see something more

so will discuss this in March. And finally, Miss Madison (holds too

much/goes infrequently/thickened bladder wall/frequent infections) we've

seen no improvements in with the med and schedule. She tries every

2 hours but there is just nothing coming out and while we were on Abby's

Wish trip this last week she went 24+ hours on a couple of occasions in

between going. This with major amounts of hydration too as I was

trying to avoid altitude sickness in all of us and was seriously pushing

the gatorade. I knew the stress of the trip might set things back,

and normally she doesn't go quite that long in between urinations, but

it was still not what I wanted to see. Probably silly, but I am still

holding out hope maybe we can come up with something that helps her.

Promise to share if we do!!!!

Just wondering, did the doctor say what his concerns were with the girls

retaining?? Wondering what damage could be caused if they are not

in pain ya know?? I think I (blindly) keep thinking that if Madison

is not hurting, maybe its not doing damage. Course, I know better

to some extent, but cannot help myself at the moment.

Good luck hun and know your in my thoughts and prayers.

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Home Page (http://home.swbell.net/mcpoop/index1.htm)

Updates (http://www.caringbridge.org/tx/mitowhat/)

United Mitochondrial Disease Foundation

(http://www.umdf.org)

"Life is not about the breaths we take, but the moments that take

our breath away" Unknown

kerry.tobin@... wrote:

:

What do they expect from using dytropan? I have asked if there

is anything else besides having to cath after 12 hr without urine and was

told there was nothing and this was what needed to be done. We have

been able to avoid doing it at home until now, we actually have a nurse

on her way to our house now because Brenna has not gone in 15 hrs.

I still am holding out hope that she will go before she gets here.

Best of luck trying this med ~ Please let me/us know how it goes and

thanks for sharing this info.

Kerry

Please contact mito-owner with any problems or questions.

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Thanks for the info Kass. The nurse did have to come and cath Brenna

this morning. She got 250 cc out after 15+ hrs.

Our urologist at last appointment said we had to cath Brenna daily.

Then while there she had a wet diaper and he said see you in 1 yr. A very

drastic change in one visit. Over the past 2 months Brenna is having urine

retention more and more. Before it was during illness & heat.

So far this week she went 20 hr on thurs, 12 + on Friday and then today.

It is our home nurse that is advocating for us to find answers. We

have not talked with the MD, but his nurse who scheduled the urodynamic

study on both girls. The thought about why they are not in pain is

that their bladder is getting stretched.

Hailey is on Kristalose for constipation. Brenna does not have constipation.

Just this week I am starting to change my mind about the whole wait

and it will come out ~ I am now getting afraid that by waiting 15 or 20

hrs we are probably doing more harm to her than by if we just did a cath.

The whole thing is overwhelming at this point. I have not done that

cathing yet, I do need to learn, but I am refusing to have anyone teach

me unless they actually need to be cathed. The orders we have from the

urologist is cath both girls if they go longer than 12 hrs.

Let us know how things go @ Mayo and again thanks for the info that

I will share with our nurse.

Kerry

Kass wrote:

Hey Kerry....hope you don't mind me jumping in here!!

Ditropan is an anti-spasmodic and works well for kids with incontinence

issues (like my Chance and Abby). In their case, rather than holding

too much urine, they both begin having bladder spasms, such that they would

wet themselves if they laughed or coughed long before they have as much

in their bladder as they should.

The only options our urologist gave us for Madison holding too much

was a med called Cardura, which relaxes the bladder neck (and theoretically

we hoped might allow her to release more easily) and an attempt at an every

two hour schedule....atleast having her try that frequently. Course

your girls are much younger so I am suspecting this part might be impossible.

Have they checked the girls for constipation by any chance?? This

can apparently play a big part in urological issues (in both directions,

those that hold too much AND those with incontinence issues). Along

with the meds my guys were given to try and address the urological issues,

2 of them are also now being treated for constipation as a part of our

effort to get some control.

We're honestly getting mixed results over here from what we're trying.

Chance (spasming bladder/incontinence issues) we're seeing very nice results

with the increased Ditropan and continuing the every 2 hour schedule.

As long as he gets his Ditropan he almost never has accidents, though we

have found that if a dose is missed, it comes back full force. He

IS back to having some days of burning and feeling like he needs to go

but cannot, so we'll need to address this when we get back to Mayo in March,

but so far its been pretty manageable. Abby (spasming bladder/incontinence

issues) we're seeing no change in with the Ditropan and the schedule unfortunatly,

though we might be able to increase the ditropan and see something more

so will discuss this in March. And finally, Miss Madison (holds too

much/goes infrequently/thickened bladder wall/frequent infections) we've

seen no improvements in with the med and schedule. She tries every

2 hours but there is just nothing coming out and while we were on Abby's

Wish trip this last week she went 24+ hours on a couple of occasions in

between going. This with major amounts of hydration too as I was

trying to avoid altitude sickness in all of us and was seriously pushing

the gatorade. I knew the stress of the trip might set things back,

and normally she doesn't go quite that long in between urinations, but

it was still not what I wanted to see. Probably silly, but I am still

holding out hope maybe we can come up with something that helps her.

Promise to share if we do!!!!

Just wondering, did the doctor say what his concerns were with the girls

retaining?? Wondering what damage could be caused if they are not

in pain ya know?? I think I (blindly) keep thinking that if Madison

is not hurting, maybe its not doing damage. Course, I know better

to some extent, but cannot help myself at the moment.

Good luck hun and know your in my thoughts and prayers.

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Home Page (http://home.swbell.net/mcpoop/index1.htm)

Updates (http://www.caringbridge.org/tx/mitowhat/)

United Mitochondrial Disease Foundation

(http://www.umdf.org)

"Life is not about the breaths we take, but the moments that take

our breath away" Unknown

kerry.tobin@... wrote:

:

What do they expect from using dytropan? I have asked if there

is anything else besides having to cath after 12 hr without urine and was

told there was nothing and this was what needed to be done. We have

been able to avoid doing it at home until now, we actually have a nurse

on her way to our house now because Brenna has not gone in 15 hrs.

I still am holding out hope that she will go before she gets here.

Best of luck trying this med ~ Please let me/us know how it goes and

thanks for sharing this info.

Kerry

Please contact mito-owner with any problems or questions.

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Kass,

I'm glad you jumped in to explain a little about Ditropan. You know more about than I do and I'm glad to hear that it is working well. I hope we have the same result.

Thanks

Kass wrote:

Hey Kerry....hope you don't mind me jumping in here!! Ditropan is an anti-spasmodic and works well for kids with incontinence issues (like my Chance and Abby). In their case, rather than holding too much urine, they both begin having bladder spasms, such that they would wet themselves if they laughed or coughed long before they have as much in their bladder as they should. The only options our urologist gave us for Madison holding too much was a med called Cardura, which relaxes the bladder neck (and theoretically we hoped might allow her to release more easily) and an attempt at an every two hour schedule....atleast having her try that frequently. Course your girls are much younger so I am suspecting this part might be impossible. Have they checked the girls for constipation by any chance?? This can apparently play a big part in urological issues (in both directions, those that hold too much AND those with incontinence issues). Along with the meds my guys were given to try and address the urological issues, 2 of them are also now being treated for constipation as a part of our effort to get some control. We're honestly getting mixed results over here from what we're trying. Chance (spasming bladder/incontinence issues) we're seeing very nice results with the increased Ditropan and continuing the every 2 hour schedule. As long as he gets his Ditropan he almost never has accidents, though we have found that if a dose is missed, it comes back full force. He IS back to having some days of burning and feeling like he needs to go but cannot, so we'll need to address this when we get back to Mayo in March, but so far its been pretty manageable. Abby (spasming bladder/incontinence issues) we're seeing no change in with the Ditropan and the schedule unfortunatly, though we might be able to increase the ditropan and see something more so will discuss this in March. And finally, Miss Madison (holds too much/goes infrequently/thickened bladder wall/frequent infections) we've seen no improvements in with the med and schedule. She tries every 2 hours but

there is just nothing coming out and while we were on Abby's Wish trip this last week she went 24+ hours on a couple of occasions in between going. This with major amounts of hydration too as I was trying to avoid altitude sickness in all of us and was seriously pushing the gatorade. I knew the stress of the trip might set things back, and normally she doesn't go quite that long in between urinations, but it was still not what I wanted to see. Probably silly, but I am still holding out hope maybe we can come up with something that helps her. Promise to share if we do!!!! Just wondering, did the doctor say what his concerns were with the girls retaining?? Wondering what damage could be caused if they are not in pain ya know?? I think I (blindly) keep thinking that if Madison is not hurting, maybe its not doing damage. Course, I know better to some extent, but cannot help myself at the moment. Good luck hun and know your in my thoughts and prayers. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown kerry.tobin@... wrote: : What do they expect from using dytropan? I have asked if there is anything else besides having to cath after 12 hr without urine and was told there was nothing and this was what needed to be done. We have been able to avoid doing it at home until now, we actually have a nurse on her way to our house now because Brenna has not gone in 15 hrs. I still am holding out hope that she will go before she gets here. Best of luck trying this med ~ Please let me/us know how it goes and thanks for sharing this info. KerryPlease contact mito-owner with any problems or questions.

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Kass,

I'm glad you jumped in to explain a little about Ditropan. You know more about than I do and I'm glad to hear that it is working well. I hope we have the same result.

Thanks

Kass wrote:

Hey Kerry....hope you don't mind me jumping in here!! Ditropan is an anti-spasmodic and works well for kids with incontinence issues (like my Chance and Abby). In their case, rather than holding too much urine, they both begin having bladder spasms, such that they would wet themselves if they laughed or coughed long before they have as much in their bladder as they should. The only options our urologist gave us for Madison holding too much was a med called Cardura, which relaxes the bladder neck (and theoretically we hoped might allow her to release more easily) and an attempt at an every two hour schedule....atleast having her try that frequently. Course your girls are much younger so I am suspecting this part might be impossible. Have they checked the girls for constipation by any chance?? This can apparently play a big part in urological issues (in both directions, those that hold too much AND those with incontinence issues). Along with the meds my guys were given to try and address the urological issues, 2 of them are also now being treated for constipation as a part of our effort to get some control. We're honestly getting mixed results over here from what we're trying. Chance (spasming bladder/incontinence issues) we're seeing very nice results with the increased Ditropan and continuing the every 2 hour schedule. As long as he gets his Ditropan he almost never has accidents, though we have found that if a dose is missed, it comes back full force. He IS back to having some days of burning and feeling like he needs to go but cannot, so we'll need to address this when we get back to Mayo in March, but so far its been pretty manageable. Abby (spasming bladder/incontinence issues) we're seeing no change in with the Ditropan and the schedule unfortunatly, though we might be able to increase the ditropan and see something more so will discuss this in March. And finally, Miss Madison (holds too much/goes infrequently/thickened bladder wall/frequent infections) we've seen no improvements in with the med and schedule. She tries every 2 hours but

there is just nothing coming out and while we were on Abby's Wish trip this last week she went 24+ hours on a couple of occasions in between going. This with major amounts of hydration too as I was trying to avoid altitude sickness in all of us and was seriously pushing the gatorade. I knew the stress of the trip might set things back, and normally she doesn't go quite that long in between urinations, but it was still not what I wanted to see. Probably silly, but I am still holding out hope maybe we can come up with something that helps her. Promise to share if we do!!!! Just wondering, did the doctor say what his concerns were with the girls retaining?? Wondering what damage could be caused if they are not in pain ya know?? I think I (blindly) keep thinking that if Madison is not hurting, maybe its not doing damage. Course, I know better to some extent, but cannot help myself at the moment. Good luck hun and know your in my thoughts and prayers. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown kerry.tobin@... wrote: : What do they expect from using dytropan? I have asked if there is anything else besides having to cath after 12 hr without urine and was told there was nothing and this was what needed to be done. We have been able to avoid doing it at home until now, we actually have a nurse on her way to our house now because Brenna has not gone in 15 hrs. I still am holding out hope that she will go before she gets here. Best of luck trying this med ~ Please let me/us know how it goes and thanks for sharing this info. KerryPlease contact mito-owner with any problems or questions.

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Kass,

I'm glad you jumped in to explain a little about Ditropan. You know more about than I do and I'm glad to hear that it is working well. I hope we have the same result.

Thanks

Kass wrote:

Hey Kerry....hope you don't mind me jumping in here!! Ditropan is an anti-spasmodic and works well for kids with incontinence issues (like my Chance and Abby). In their case, rather than holding too much urine, they both begin having bladder spasms, such that they would wet themselves if they laughed or coughed long before they have as much in their bladder as they should. The only options our urologist gave us for Madison holding too much was a med called Cardura, which relaxes the bladder neck (and theoretically we hoped might allow her to release more easily) and an attempt at an every two hour schedule....atleast having her try that frequently. Course your girls are much younger so I am suspecting this part might be impossible. Have they checked the girls for constipation by any chance?? This can apparently play a big part in urological issues (in both directions, those that hold too much AND those with incontinence issues). Along with the meds my guys were given to try and address the urological issues, 2 of them are also now being treated for constipation as a part of our effort to get some control. We're honestly getting mixed results over here from what we're trying. Chance (spasming bladder/incontinence issues) we're seeing very nice results with the increased Ditropan and continuing the every 2 hour schedule. As long as he gets his Ditropan he almost never has accidents, though we have found that if a dose is missed, it comes back full force. He IS back to having some days of burning and feeling like he needs to go but cannot, so we'll need to address this when we get back to Mayo in March, but so far its been pretty manageable. Abby (spasming bladder/incontinence issues) we're seeing no change in with the Ditropan and the schedule unfortunatly, though we might be able to increase the ditropan and see something more so will discuss this in March. And finally, Miss Madison (holds too much/goes infrequently/thickened bladder wall/frequent infections) we've seen no improvements in with the med and schedule. She tries every 2 hours but

there is just nothing coming out and while we were on Abby's Wish trip this last week she went 24+ hours on a couple of occasions in between going. This with major amounts of hydration too as I was trying to avoid altitude sickness in all of us and was seriously pushing the gatorade. I knew the stress of the trip might set things back, and normally she doesn't go quite that long in between urinations, but it was still not what I wanted to see. Probably silly, but I am still holding out hope maybe we can come up with something that helps her. Promise to share if we do!!!! Just wondering, did the doctor say what his concerns were with the girls retaining?? Wondering what damage could be caused if they are not in pain ya know?? I think I (blindly) keep thinking that if Madison is not hurting, maybe its not doing damage. Course, I know better to some extent, but cannot help myself at the moment. Good luck hun and know your in my thoughts and prayers. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown kerry.tobin@... wrote: : What do they expect from using dytropan? I have asked if there is anything else besides having to cath after 12 hr without urine and was told there was nothing and this was what needed to be done. We have been able to avoid doing it at home until now, we actually have a nurse on her way to our house now because Brenna has not gone in 15 hrs. I still am holding out hope that she will go before she gets here. Best of luck trying this med ~ Please let me/us know how it goes and thanks for sharing this info. KerryPlease contact mito-owner with any problems or questions.

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Kass,

I'm glad you jumped in to explain a little about Ditropan. You know more about than I do and I'm glad to hear that it is working well. I hope we have the same result.

Thanks

Kass wrote:

Hey Kerry....hope you don't mind me jumping in here!! Ditropan is an anti-spasmodic and works well for kids with incontinence issues (like my Chance and Abby). In their case, rather than holding too much urine, they both begin having bladder spasms, such that they would wet themselves if they laughed or coughed long before they have as much in their bladder as they should. The only options our urologist gave us for Madison holding too much was a med called Cardura, which relaxes the bladder neck (and theoretically we hoped might allow her to release more easily) and an attempt at an every two hour schedule....atleast having her try that frequently. Course your girls are much younger so I am suspecting this part might be impossible. Have they checked the girls for constipation by any chance?? This can apparently play a big part in urological issues (in both directions, those that hold too much AND those with incontinence issues). Along with the meds my guys were given to try and address the urological issues, 2 of them are also now being treated for constipation as a part of our effort to get some control. We're honestly getting mixed results over here from what we're trying. Chance (spasming bladder/incontinence issues) we're seeing very nice results with the increased Ditropan and continuing the every 2 hour schedule. As long as he gets his Ditropan he almost never has accidents, though we have found that if a dose is missed, it comes back full force. He IS back to having some days of burning and feeling like he needs to go but cannot, so we'll need to address this when we get back to Mayo in March, but so far its been pretty manageable. Abby (spasming bladder/incontinence issues) we're seeing no change in with the Ditropan and the schedule unfortunatly, though we might be able to increase the ditropan and see something more so will discuss this in March. And finally, Miss Madison (holds too much/goes infrequently/thickened bladder wall/frequent infections) we've seen no improvements in with the med and schedule. She tries every 2 hours but

there is just nothing coming out and while we were on Abby's Wish trip this last week she went 24+ hours on a couple of occasions in between going. This with major amounts of hydration too as I was trying to avoid altitude sickness in all of us and was seriously pushing the gatorade. I knew the stress of the trip might set things back, and normally she doesn't go quite that long in between urinations, but it was still not what I wanted to see. Probably silly, but I am still holding out hope maybe we can come up with something that helps her. Promise to share if we do!!!! Just wondering, did the doctor say what his concerns were with the girls retaining?? Wondering what damage could be caused if they are not in pain ya know?? I think I (blindly) keep thinking that if Madison is not hurting, maybe its not doing damage. Course, I know better to some extent, but cannot help myself at the moment. Good luck hun and know your in my thoughts and prayers. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown kerry.tobin@... wrote: : What do they expect from using dytropan? I have asked if there is anything else besides having to cath after 12 hr without urine and was told there was nothing and this was what needed to be done. We have been able to avoid doing it at home until now, we actually have a nurse on her way to our house now because Brenna has not gone in 15 hrs. I still am holding out hope that she will go before she gets here. Best of luck trying this med ~ Please let me/us know how it goes and thanks for sharing this info. KerryPlease contact mito-owner with any problems or questions.

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My daughter has had urinary retention for about 3 yrs. She can go up to 48 hrs without peeing...says she just doesn't feel like she has to go. And then when i force the issue, she often struggles to get urine out. by the time she CAN go, it often is VERY dark (almost brown), and smells strongly of ammonia. VCUG showed her bladder was completely full even after she emptied and felt she didn't have anymore. mito doc says her bladder is stretched out, and the muscles are too weak to squeeze the urine out until she reaches "crisis" level...no great solutions on how to fix it. we are working on "bladder retraining" where i remind her every 2-4 hrs to at lesat try to pee...very frustrating all the way aroung

ruth

mom to Mitch and Lexi, both mito affected, and both enjoying our SNOW this morning! :)

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We were able to avoid it again Saturday night and then today ~ she went

just over 12 hrs.

I have been thinking about Chance and hope he is doing better.

I will let you know how things go here and thank you once again for

all your input on this issue and for thinking of us.

Kerry

Kass wrote:

Hey Kerry :-)

Have been keeping you guys in my thoughts and prayers and was wondering

how things are going on this front?? Have you had to cath again??

How are the girls doing??

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Home Page (http://home.swbell.net/mcpoop/index1.htm)

Updates (http://www.caringbridge.org/tx/mitowhat/)

United Mitochondrial Disease Foundation

(http://www.umdf.org)

"Life is not about the breaths we take, but the moments that take

our breath away" Unknown

kerry.tobin@... wrote:

Thanks for the info Kass. The nurse did have

to come and cath Brenna this morning. She got 250 cc out after 15+

hrs.

Our urologist at last appointment said we had to cath Brenna daily.

Then while there she had a wet diaper and he said see you in 1 yr. A very

drastic change in one visit. Over the past 2 months Brenna is having urine

retention more and more. Before it was during illness & heat.

So far this week she went 20 hr on thurs, 12 + on Friday and then today.

It is our home nurse that is advocating for us to find answers. We

have not talked with the MD, but his nurse who scheduled the urodynamic

study on both girls. The thought about why they are not in pain is

that their bladder is getting stretched.

Hailey is on Kristalose for constipation. Brenna does not have constipation.

Just this week I am starting to change my mind about the whole wait

and it will come out ~ I am now getting afraid that by waiting 15 or 20

hrs we are probably doing more harm to her than by if we just did a cath.

The whole thing is overwhelming at this point. I have not done that

cathing yet, I do need to learn, but I am refusing to have anyone teach

me unless they actually need to be cathed. The orders we have from the

urologist is cath both girls if they go longer than 12 hrs.

Let us know how things go @ Mayo and again thanks for the info that

I will share with our nurse.

Kerry

Please contact mito-owner with any problems or questions.

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We were able to avoid it again Saturday night and then today ~ she went

just over 12 hrs.

I have been thinking about Chance and hope he is doing better.

I will let you know how things go here and thank you once again for

all your input on this issue and for thinking of us.

Kerry

Kass wrote:

Hey Kerry :-)

Have been keeping you guys in my thoughts and prayers and was wondering

how things are going on this front?? Have you had to cath again??

How are the girls doing??

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Home Page (http://home.swbell.net/mcpoop/index1.htm)

Updates (http://www.caringbridge.org/tx/mitowhat/)

United Mitochondrial Disease Foundation

(http://www.umdf.org)

"Life is not about the breaths we take, but the moments that take

our breath away" Unknown

kerry.tobin@... wrote:

Thanks for the info Kass. The nurse did have

to come and cath Brenna this morning. She got 250 cc out after 15+

hrs.

Our urologist at last appointment said we had to cath Brenna daily.

Then while there she had a wet diaper and he said see you in 1 yr. A very

drastic change in one visit. Over the past 2 months Brenna is having urine

retention more and more. Before it was during illness & heat.

So far this week she went 20 hr on thurs, 12 + on Friday and then today.

It is our home nurse that is advocating for us to find answers. We

have not talked with the MD, but his nurse who scheduled the urodynamic

study on both girls. The thought about why they are not in pain is

that their bladder is getting stretched.

Hailey is on Kristalose for constipation. Brenna does not have constipation.

Just this week I am starting to change my mind about the whole wait

and it will come out ~ I am now getting afraid that by waiting 15 or 20

hrs we are probably doing more harm to her than by if we just did a cath.

The whole thing is overwhelming at this point. I have not done that

cathing yet, I do need to learn, but I am refusing to have anyone teach

me unless they actually need to be cathed. The orders we have from the

urologist is cath both girls if they go longer than 12 hrs.

Let us know how things go @ Mayo and again thanks for the info that

I will share with our nurse.

Kerry

Please contact mito-owner with any problems or questions.

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We were able to avoid it again Saturday night and then today ~ she went

just over 12 hrs.

I have been thinking about Chance and hope he is doing better.

I will let you know how things go here and thank you once again for

all your input on this issue and for thinking of us.

Kerry

Kass wrote:

Hey Kerry :-)

Have been keeping you guys in my thoughts and prayers and was wondering

how things are going on this front?? Have you had to cath again??

How are the girls doing??

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Home Page (http://home.swbell.net/mcpoop/index1.htm)

Updates (http://www.caringbridge.org/tx/mitowhat/)

United Mitochondrial Disease Foundation

(http://www.umdf.org)

"Life is not about the breaths we take, but the moments that take

our breath away" Unknown

kerry.tobin@... wrote:

Thanks for the info Kass. The nurse did have

to come and cath Brenna this morning. She got 250 cc out after 15+

hrs.

Our urologist at last appointment said we had to cath Brenna daily.

Then while there she had a wet diaper and he said see you in 1 yr. A very

drastic change in one visit. Over the past 2 months Brenna is having urine

retention more and more. Before it was during illness & heat.

So far this week she went 20 hr on thurs, 12 + on Friday and then today.

It is our home nurse that is advocating for us to find answers. We

have not talked with the MD, but his nurse who scheduled the urodynamic

study on both girls. The thought about why they are not in pain is

that their bladder is getting stretched.

Hailey is on Kristalose for constipation. Brenna does not have constipation.

Just this week I am starting to change my mind about the whole wait

and it will come out ~ I am now getting afraid that by waiting 15 or 20

hrs we are probably doing more harm to her than by if we just did a cath.

The whole thing is overwhelming at this point. I have not done that

cathing yet, I do need to learn, but I am refusing to have anyone teach

me unless they actually need to be cathed. The orders we have from the

urologist is cath both girls if they go longer than 12 hrs.

Let us know how things go @ Mayo and again thanks for the info that

I will share with our nurse.

Kerry

Please contact mito-owner with any problems or questions.

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Hi bug

I have the problem every so often. It may last a few months until I decide

to have it checked out and then resolves. I have been told that it can be a

mito thing. I was told that if it continued to be a problem, that I would

have to do intermittent self-cathing. I don't have infections, so the

urologist wasn't too concerned. I know has similar problems.

laurie

>

> Reply-To:

> Date: Thu, 27 Jan 2005 00:13:20 -0000

> To:

> Subject: Urinary retention

>

>

> Does anyone have problems with urinary retention ? Has your doc ever

> said it was related to the mito ?

>

> bug

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

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

>

>

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Yes and no.

venomvw wrote:

>Does anyone have problems with urinary retention ? Has your doc ever

>said it was related to the mito ?

>

>bug

>

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

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