Re: Re: Urine odor/Anne

[Guest guest]

Hi Anne :-)

I've been thinking about you all during your wait to hear results and

hope you know your in my prayers.

FWIW, I truly don't think this is an issue of you not being good at

potty training!! Generally speaking, particularly in a boy, they

don't even consider them "late" for potty training till they are 5 yrs

old and even then, if there are other developmental delays, they don't

get excited till even older. Unless there is something indicating

a problem...recurrent UTI's or some other urine work indicating a problem.....a

urologist isn't likely to get very interested just yet. For the most

part in a case where there are other challenges, they sort of assume the

potty control is going to happen later than in a typical child.

This is not to say that you couldn't establish a relationship with a

urologist and do some very basic base line testing to be sure all seems

normal in this respect, but I'd not expect that they would want to do any

of the more invasive testing till an issue more clearly defines itself.

In our case, FWIW, Chance did not train til he was 5 1/2 yrs old and always

has had stress incontinence issues, and Madison didn't train till she was

almost 5 and only then (I believe) because we started supplements and she

finally felt what was going on. Both (and Abby) have ultimatly ended

up with bladder and bowel issues that are muscle related, but for the most

part even if we had done testing earlier than just this past October, little

would have changed as far as treatment. Thankfully treatment we're

working with IS helping.....not solving the problems, but helping some.

Hope this helps!!! Potty training can just be a real struggle

for these kids and can take some time.....patience is going to be the key.

-- BIG hugs,

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

and Abby(6-Mito)

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

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

AReckling@... wrote:

Hi,

I know you said you kind of wish you'd

seen a urologist years ago but my worry is that no one will take me seriously

given that Asher is only 3 years 2 months old. But, I distinctly remember

that when he was much younger and I wasn't even thinking about potty training

but (I did get the potties out to let him be familiar with them) he could

sit on them and control his stream of urine. He could stop and start it.

He was less than 2 (18 months, I think) and with all his other difficulties,

I chose not to train him at that time and now he doesn't seem to have that

control. Or maybe I'm just not doing a good job with potty training. I

don't know. It's so complicated when you have a kid with motor difficulties,

a G-tube sticking out of his stomach, and a GI dysmotility problem. My

"joke" is that he won't go to prom in a pull-up .... he'll be trained before

then!

Anne R

You mentioned that you are seeing a urologist for

her urine/motility issues - can I ask if you are

dealing with motility issues in pee or is that just for

poop? My son, Asher, has GI dysmotility and he also

does not seem to be aware of when he has to pee.

He's over 3 and bright and so I don't know if we

head to a urologist next or what.

[Guest guest]

Hi Anne :-)

I've been thinking about you all during your wait to hear results and

hope you know your in my prayers.

FWIW, I truly don't think this is an issue of you not being good at

potty training!! Generally speaking, particularly in a boy, they

don't even consider them "late" for potty training till they are 5 yrs

old and even then, if there are other developmental delays, they don't

get excited till even older. Unless there is something indicating

a problem...recurrent UTI's or some other urine work indicating a problem.....a

urologist isn't likely to get very interested just yet. For the most

part in a case where there are other challenges, they sort of assume the

potty control is going to happen later than in a typical child.

This is not to say that you couldn't establish a relationship with a

urologist and do some very basic base line testing to be sure all seems

normal in this respect, but I'd not expect that they would want to do any

of the more invasive testing till an issue more clearly defines itself.

In our case, FWIW, Chance did not train til he was 5 1/2 yrs old and always

has had stress incontinence issues, and Madison didn't train till she was

almost 5 and only then (I believe) because we started supplements and she

finally felt what was going on. Both (and Abby) have ultimatly ended

up with bladder and bowel issues that are muscle related, but for the most

part even if we had done testing earlier than just this past October, little

would have changed as far as treatment. Thankfully treatment we're

working with IS helping.....not solving the problems, but helping some.

Hope this helps!!! Potty training can just be a real struggle

for these kids and can take some time.....patience is going to be the key.

-- BIG hugs,

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

and Abby(6-Mito)

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

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

AReckling@... wrote:

Hi,

I know you said you kind of wish you'd

seen a urologist years ago but my worry is that no one will take me seriously

given that Asher is only 3 years 2 months old. But, I distinctly remember

that when he was much younger and I wasn't even thinking about potty training

but (I did get the potties out to let him be familiar with them) he could

sit on them and control his stream of urine. He could stop and start it.

He was less than 2 (18 months, I think) and with all his other difficulties,

I chose not to train him at that time and now he doesn't seem to have that

control. Or maybe I'm just not doing a good job with potty training. I

don't know. It's so complicated when you have a kid with motor difficulties,

a G-tube sticking out of his stomach, and a GI dysmotility problem. My

"joke" is that he won't go to prom in a pull-up .... he'll be trained before

then!

Anne R

You mentioned that you are seeing a urologist for

her urine/motility issues - can I ask if you are

dealing with motility issues in pee or is that just for

poop? My son, Asher, has GI dysmotility and he also

does not seem to be aware of when he has to pee.

He's over 3 and bright and so I don't know if we

head to a urologist next or what.

[Guest guest]

Hi Anne :-)

I've been thinking about you all during your wait to hear results and

hope you know your in my prayers.

FWIW, I truly don't think this is an issue of you not being good at

potty training!! Generally speaking, particularly in a boy, they

don't even consider them "late" for potty training till they are 5 yrs

old and even then, if there are other developmental delays, they don't

get excited till even older. Unless there is something indicating

a problem...recurrent UTI's or some other urine work indicating a problem.....a

urologist isn't likely to get very interested just yet. For the most

part in a case where there are other challenges, they sort of assume the

potty control is going to happen later than in a typical child.

This is not to say that you couldn't establish a relationship with a

urologist and do some very basic base line testing to be sure all seems

normal in this respect, but I'd not expect that they would want to do any

of the more invasive testing till an issue more clearly defines itself.

In our case, FWIW, Chance did not train til he was 5 1/2 yrs old and always

has had stress incontinence issues, and Madison didn't train till she was

almost 5 and only then (I believe) because we started supplements and she

finally felt what was going on. Both (and Abby) have ultimatly ended

up with bladder and bowel issues that are muscle related, but for the most

part even if we had done testing earlier than just this past October, little

would have changed as far as treatment. Thankfully treatment we're

working with IS helping.....not solving the problems, but helping some.

Hope this helps!!! Potty training can just be a real struggle

for these kids and can take some time.....patience is going to be the key.

-- BIG hugs,

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

and Abby(6-Mito)

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

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

AReckling@... wrote:

Hi,

I know you said you kind of wish you'd

seen a urologist years ago but my worry is that no one will take me seriously

given that Asher is only 3 years 2 months old. But, I distinctly remember

that when he was much younger and I wasn't even thinking about potty training

but (I did get the potties out to let him be familiar with them) he could

sit on them and control his stream of urine. He could stop and start it.

He was less than 2 (18 months, I think) and with all his other difficulties,

I chose not to train him at that time and now he doesn't seem to have that

control. Or maybe I'm just not doing a good job with potty training. I

don't know. It's so complicated when you have a kid with motor difficulties,

a G-tube sticking out of his stomach, and a GI dysmotility problem. My

"joke" is that he won't go to prom in a pull-up .... he'll be trained before

then!

Anne R

You mentioned that you are seeing a urologist for

her urine/motility issues - can I ask if you are

dealing with motility issues in pee or is that just for

poop? My son, Asher, has GI dysmotility and he also

does not seem to be aware of when he has to pee.

He's over 3 and bright and so I don't know if we

head to a urologist next or what.

[Guest guest]

Hey Tamara!!! I owe you an email hun and am sorry I've been so far

behind lately!!!

Just wanted to share that this sounds like what we've been going through

with Abby since last fall. After being totally trained since she

was 3 1/2 she started having odd accidents here and there during the day

and then was wetting the bed almost nightly, starting when she was about

5 1/2. We could find no obvious reason for the issues and went through

urine testing to be sure there was no infection, went over changes in our

lives to see if there was something upsetting her, changes in routine,

ANYTHING, and we never could find a reasonable answer for why. When

we went to Mayo in October they did urodynamics testing on her (NOT a fun

test) and while things looked relatively normal, there was some spasming

of her bladder a little earlier than they would have expected (her brother

has this very severely).....basically meaning that her bladder is spasming

sooner than it should be and if she were to cough or laugh, OR go all night

without urinating, she's more likely to wet herself.

While normally the results would not have been such that they would

have medicated, due to her brothers issues and the severity of them, they

decided to try her on Ditropan, an anti-spasmodic, to see if it would help

at all. Really were not sure it would, and ultimatly, doubt its the

reason that things have gotten better. We additionally have her on

an every two hour schedule of urinating, have her go before bed of course,

and limit fluids after 6pm every day. It was a good three months

after starting all of this before she really quite suddenly quite wetting

the bed and she's had all of two accidents since then (so its been about

2 months now!!!). Docs are not sure what helped but decided to leave

things as they are and see how she does. Interestingly, and I think

indicative to some extent that this was fatigue related in some way, the

only two accidents she's had were the nights after she's had a big busy

day.

Wondering if your doc is wanting to wait and see in case his resolves

like hers has for the most part?? I wish I could tell you what has

made the difference over here, but something happened and she's been great

for a little while now. Hoping you all will see the same over there!!

Keep the faith!!

-- BIG hugs,

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

and Abby(6-Mito)

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

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

Tamara wrote:

Dear Anne,My son who just turned 5 years old

last week, has lost his ability to be potty trained at night time.

He was 100% potty trained for a year, up until 5 months ago. We are

very worried about it yet our doctors said lets watch it for a while(a

year). To us that is not awhile! That is a long wait!!

That is too long for me to wait. He does pretty good during the day.

And I'm sure it is a muscle tone issue.I wish you luck! Let us know

what you find out!!!!!Good Luck!!!!Tamara(mommy of age 5, unspecific

Mito)