Re: Grace's Urology Appt.

[Guest guest]

Jane I saw your FB post and I am sorry you and Grace are having to face this "new" problem now. It seems like it never ends sometimes with our kiddos. I am hoping that the worst case isn't so for little Grace and maybe eventually she will be able to have more control on the potty. Can she go Number 2 on the potty?? just wondering if it effects both. Keep us posted on what you find out after the tests

Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Wed, March 24, 2010 10:38:20 AMSubject: Grace's Urology Appt.

As some of you may have seen on my FB yesterday, we finally had our consult with urology about Grace's lack of potty training. As a quick overview, Grace is 3 1/2 and we have been trying for over a year to potty train, she sits on the potty 3-5 times a day and has NEVER been successful at going on the potty. She can hold her urine for a VERY long time. Sometimes 10-12 hours. Her ortho surgeon wasn't ready to broach the subject of it being related to her spine yet. As he put it, she is ONLY 3. But the days and months are ticking by and before we know it, she'll be 4, then 5. So I asked for a referral from our pediatrician.

Since Grace is in a cast, there wasn't much in the way of actual evaluation they could do yesterday. The lady said that if she didn't have other "defects" she was born with (Omphalocele and Scoliosis) she would continue to "wait and see" for another 6-8 months. But, since it could be related to either of those things, we have to have invasive testing done of her bladder.

The main concern is that it doesn't appear that Grace can feel when she needs to go and obviously can't control if she goes or not. The fear is that her bladder has to get beyond full before it will finally trigger to empty. This would be worse case scenario. If this is the problem, there isn't much they can do. The only thing we could do to help her, is to catherize her on a regular basis, to keep her bladder from stretching out, maybe even full time while she's young. The doctor said if that is what the problem is, it will be life long unless someone finds a "cure".

I know I've asked before, but are there any parents out there of older kids that have had similar issues?

Thanks!

Jane

[Guest guest]

Jane,Sorry to hear that. My hope and prayer is that she will eventually just go on her own.Being a mom is so hard sometimes when our babies are the ones going through it all.Please keep us posted on things. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months. Brace 10 months 23hrs a day. Night bracing from July 08-present. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Wed, March 24, 2010 10:38:20 AMSubject: Grace's Urology Appt.

As some of you may have seen on my FB yesterday, we finally had our consult with urology about Grace's lack of potty training. As a quick overview, Grace is 3 1/2 and we have been trying for over a year to potty train, she sits on the potty 3-5 times a day and has NEVER been successful at going on the potty. She can hold her urine for a VERY long time. Sometimes 10-12 hours. Her ortho surgeon wasn't ready to broach the subject of it being related to her spine yet. As he put it, she is ONLY 3. But the days and months are ticking by and before we know it, she'll be 4, then 5. So I asked for a referral from our pediatrician.

Since Grace is in a cast, there wasn't much in the way of actual evaluation they could do yesterday. The lady said that if she didn't have other "defects" she was born with (Omphalocele and Scoliosis) she would continue to "wait and see" for another 6-8 months. But, since it could be related to either of those things, we have to have invasive testing done of her bladder.

The main concern is that it doesn't appear that Grace can feel when she needs to go and obviously can't control if she goes or not. The fear is that her bladder has to get beyond full before it will finally trigger to empty. This would be worse case scenario. If this is the problem, there isn't much they can do. The only thing we could do to help her, is to catherize her on a regular basis, to keep her bladder from stretching out, maybe even full time while she's young. The doctor said if that is what the problem is, it will be life long unless someone finds a "cure".

I know I've asked before, but are there any parents out there of older kids that have had similar issues?

Thanks!

Jane

[Guest guest]

Joan, she doesn't do either. However, she does know when she is or has just had bm and will tell us, well, until recently and the casting process has allowed for her bottom to be more sore and she doesn't like diaper changes. I don't know if it is fully related or not. I just have figured that voiding usually comes first and bowel later, so without having the first, I haven't thought too much about the bowels.

Jane

From: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Wed, March 24, 2010 10:43:41 AMSubject: Re: Grace's Urology Appt.

Jane I saw your FB post and I am sorry you and Grace are having to face this "new" problem now. It seems like it never ends sometimes with our kiddos. I am hoping that the worst case isn't so for little Grace and maybe eventually she will be able to have more control on the potty. Can she go Number 2 on the potty?? just wondering if it effects both. Keep us posted on what you find out after the tests

Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: Jane Bigler <janemhar (DOT) com>infantile scoliosis treatment @groups. comSent: Wed, March 24, 2010 10:38:20 AMSubject: [infantile_scoliosi s] Grace's Urology Appt.

As some of you may have seen on my FB yesterday, we finally had our consult with urology about Grace's lack of potty training. As a quick overview, Grace is 3 1/2 and we have been trying for over a year to potty train, she sits on the potty 3-5 times a day and has NEVER been successful at going on the potty. She can hold her urine for a VERY long time. Sometimes 10-12 hours. Her ortho surgeon wasn't ready to broach the subject of it being related to her spine yet. As he put it, she is ONLY 3. But the days and months are ticking by and before we know it, she'll be 4, then 5. So I asked for a referral from our pediatrician.

Since Grace is in a cast, there wasn't much in the way of actual evaluation they could do yesterday. The lady said that if she didn't have other "defects" she was born with (Omphalocele and Scoliosis) she would continue to "wait and see" for another 6-8 months. But, since it could be related to either of those things, we have to have invasive testing done of her bladder.

The main concern is that it doesn't appear that Grace can feel when she needs to go and obviously can't control if she goes or not. The fear is that her bladder has to get beyond full before it will finally trigger to empty. This would be worse case scenario. If this is the problem, there isn't much they can do. The only thing we could do to help her, is to catherize her on a regular basis, to keep her bladder from stretching out, maybe even full time while she's young. The doctor said if that is what the problem is, it will be life long unless someone finds a "cure".

I know I've asked before, but are there any parents out there of older kids that have had similar issues?

Thanks!

Jane

[Guest guest]

Hi Jane,

I remember having this concern with Liv, too. She would hold her bladder

for 8/10 hrs!!! I would have to remind her to go potty all the time.

Although, she never wet the bed/pants or anything, I was always

concerned.....Shes older now, but still holds it......Please let us know

how the tests go.....I hope its nothing.

Fingers crossed.

HRH

> Jane I saw your FB post and I am sorry you and Grace are having to face

> this " new " problem now. It seems like it never ends sometimes with our

> kiddos. I am hoping that the worst case isn't so for little Grace and

> maybe eventually she will be able to have more control on the potty. Can

> she go Number 2 on the potty?? just wondering if it effects both. Keep us

> posted on what you find out after the tests

>

>  Joan

> mom to Hayden 3

> 39 degrees down from 62

> Cast number 4

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

> From: Jane Bigler <janemhar@...>

> infantile scoliosis treatment

> Sent: Wed, March 24, 2010 10:38:20 AM

> Subject: Grace's Urology Appt.

>

>  

> As some of you may have seen on my FB yesterday, we finally had our

> consult with urology about Grace's lack of potty training.  As a quick

> overview, Grace is 3 1/2 and we have been trying for over a year to

> potty train, she sits on the potty 3-5 times a day and has NEVER been

> successful at going on the potty.  She can hold her urine for a VERY long

> time.  Sometimes 10-12 hours.  Her ortho surgeon wasn't ready to broach

> the subject of it being related to her spine yet.  As he put it, she is

> ONLY 3.  But the days and months are ticking by and before we know it,

> she'll be 4, then 5.  So I asked for a referral from our pediatrician.

>

> Since Grace is in a cast, there wasn't much in the way of actual

> evaluation they could do yesterday.  The lady said that if she didn't

> have other " defects " she was born with (Omphalocele and Scoliosis) she

> would continue to  " wait and see " for another 6-8 months.  But, since it

> could be related to either of those things, we have to have invasive

> testing done of her bladder.

>

> The main concern is that it doesn't appear that Grace can feel when she

> needs to go and obviously can't control if she goes or not.  The fear

> is that her bladder has to get beyond full before it will finally

> trigger to empty.  This would be worse case scenario.  If this is the

> problem, there isn't much they can do.  The only thing we could do to

> help her, is to catherize her on a regular basis, to keep her bladder from

> stretching out, maybe even full time while she's young.  The doctor

> said if that is what the problem is, it will be life long unless someone

> finds a " cure " .

>

> I know I've asked before, but are there any parents out there of older

> kids that have had similar issues?

>

> Thanks!

>  

> Jane

>

>

>

>

>

>

[Guest guest]

Oops....I may have read this wrong.....Sorry. I'll catch up on FB.

HRH

> Hi Jane,

> I remember having this concern with Liv, too. She would hold her bladder

> for 8/10 hrs!!! I would have to remind her to go potty all the time.

> Although, she never wet the bed/pants or anything, I was always

> concerned.....Shes older now, but still holds it......Please let us know

> how the tests go.....I hope its nothing.

> Fingers crossed.

> HRH

>

>

>> Jane I saw your FB post and I am sorry you and Grace are having to face

>> this " new " problem now. It seems like it never ends sometimes with our

>> kiddos. I am hoping that the worst case isn't so for little Grace and

>> maybe eventually she will be able to have more control on the potty.

>> Can

>> she go Number 2 on the potty?? just wondering if it effects both. Keep

>> us

>> posted on what you find out after the tests

>>

>>  Joan

>> mom to Hayden 3

>> 39 degrees down from 62

>> Cast number 4

>> Treated at ish Rite Hospital

>> Dallas, TX

>>

>>

>>

>>

>> ________________________________

>> From: Jane Bigler <janemhar@...>

>> infantile scoliosis treatment

>> Sent: Wed, March 24, 2010 10:38:20 AM

>> Subject: Grace's Urology Appt.

>>

>>  

>> As some of you may have seen on my FB yesterday, we finally had our

>> consult with urology about Grace's lack of potty training.  As a quick

>> overview, Grace is 3 1/2 and we have been trying for over a year to

>> potty train, she sits on the potty 3-5 times a day and has NEVER been

>> successful at going on the potty.  She can hold her urine for a VERY

>> long

>> time.  Sometimes 10-12 hours.  Her ortho surgeon wasn't ready to

>> broach

>> the subject of it being related to her spine yet.  As he put it, she is

>> ONLY 3.  But the days and months are ticking by and before we know it,

>> she'll be 4, then 5.  So I asked for a referral from our pediatrician.

>>

>> Since Grace is in a cast, there wasn't much in the way of actual

>> evaluation they could do yesterday.  The lady said that if she didn't

>> have other " defects " she was born with (Omphalocele and Scoliosis) she

>> would continue to  " wait and see " for another 6-8 months.  But, since

>> it

>> could be related to either of those things, we have to have invasive

>> testing done of her bladder.

>>

>> The main concern is that it doesn't appear that Grace can feel when she

>> needs to go and obviously can't control if she goes or not.  The fear

>> is that her bladder has to get beyond full before it will finally

>> trigger to empty.  This would be worse case scenario.  If this is the

>> problem, there isn't much they can do.  The only thing we could do to

>> help her, is to catherize her on a regular basis, to keep her bladder

>> from

>> stretching out, maybe even full time while she's young.  The doctor

>> said if that is what the problem is, it will be life long unless

>> someone

>> finds a " cure " .

>>

>> I know I've asked before, but are there any parents out there of older

>> kids that have had similar issues?

>>

>> Thanks!

>>  

>> Jane

>>

>>

>>

>>

>>

>>

>

>

>

[Guest guest]

, what is your private email address??? thx Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Wed, March 24, 2010 2:40:18 PMSubject: Re: Grace's Urology Appt.

Oops....I may have read this wrong.....Sorry. I'll catch up on FB.HRH> Hi Jane,> I remember having this concern with Liv, too. She would hold her bladder> for 8/10 hrs!!! I would have to remind her to go potty all the time.> Although, she never wet the bed/pants or anything, I was always> concerned... ..Shes older now, but still holds it......Please let us know> how the tests go.....I hope its nothing.> Fingers crossed.> HRH>>>> Jane I saw your FB post and I am sorry you and Grace are having to face>> this "new" problem now. It seems like it never ends sometimes with our>> kiddos. I am hoping that the worst case isn't so for little Grace and>> maybe eventually she will be able to have more control on the potty.>> Can>> she go Number 2 on the potty?? just wondering if it effects both. Keep>>

us>> posted on what you find out after the tests>>>>  Joan>> mom to Hayden 3>> 39 degrees down from 62>> Cast number 4>> Treated at ish Rite Hospital>> Dallas, TX>>>>>>>>>> ____________ _________ _________ __>> From: Jane Bigler <janemhar (DOT) com>>> infantile scoliosis treatment @groups. com>> Sent: Wed, March 24, 2010 10:38:20 AM>> Subject: [infantile_scoliosi s] Grace's Urology Appt.>>>>  >> As some of you may have seen on my FB yesterday, we finally had our>>

consult with urology about Grace's lack of potty training. As a quick>> overview, Grace is 3 1/2 and we have been trying for over a year to>> potty train, she sits on the potty 3-5 times a day and has NEVER been>> successful at going on the potty. She can hold her urine for a VERY>> long>> time. Sometimes 10-12 hours. Her ortho surgeon wasn't ready to>> broach>> the subject of it being related to her spine yet. As he put it, she is>> ONLY 3. But the days and months are ticking by and before we know it,>> she'll be 4, then 5. So I asked for a referral from our pediatrician.>>>> Since Grace is in a cast, there wasn't much in the way of actual>> evaluation they could do yesterday. The lady said that if she didn't>> have other "defects" she was

born with (Omphalocele and Scoliosis) she>> would continue to "wait and see" for another 6-8 months. But, since>> it>> could be related to either of those things, we have to have invasive>> testing done of her bladder.>>>> The main concern is that it doesn't appear that Grace can feel when she>> needs to go and obviously can't control if she goes or not. The fear>> is that her bladder has to get beyond full before it will finally>> trigger to empty. This would be worse case scenario. If this is the>> problem, there isn't much they can do. The only thing we could do to>> help her, is to catherize her on a regular basis, to keep her bladder>> from>> stretching out, maybe even full time while she's young.  The

doctor>> said if that is what the problem is, it will be life long unless>> someone>> finds a "cure".>>>> I know I've asked before, but are there any parents out there of older>> kids that have had similar issues?>>>> Thanks!>>  >> Jane>>>>>>>>>>>>>>>

[Guest guest]

Hey J.,

Its isop06@...

> , what is your private email address??? thx

>  Joan

> mom to Hayden 3

> 39 degrees down from 62

> Cast number 4

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

> From: " heather@... " <heather@...>

> infantile scoliosis treatment

> Sent: Wed, March 24, 2010 2:40:18 PM

> Subject: Re: Grace's Urology Appt.

>

>  

> Oops....I may have read this wrong.....Sorry. I'll catch up on FB.

> HRH

>

>> Hi Jane,

>> I remember having this concern with Liv, too. She would hold her bladder

>> for 8/10 hrs!!! I would have to remind her to go potty all the time.

>> Although, she never wet the bed/pants or anything, I was always

>> concerned... ..Shes older now, but still holds it......Please let us

>> know

>> how the tests go.....I hope its nothing.

>> Fingers crossed.

>> HRH

>>

>>

>>> Jane I saw your FB post and I am sorry you and Grace are having to face

>>> this " new " problem now. It seems like it never ends sometimes with our

>>> kiddos. I am hoping that the worst case isn't so for little Grace and

>>> maybe eventually she will be able to have more control on the potty.

>>> Can

>>> she go Number 2 on the potty?? just wondering if it effects both. Keep

>>> us

>>> posted on what you find out after the tests

>>>

>>>  Joan

>>> mom to Hayden 3

>>> 39 degrees down from 62

>>> Cast number 4

>>> Treated at ish Rite Hospital

>>> Dallas, TX

>>>

>>>

>>>

>>>

>>> ____________ _________ _________ __

>>> From: Jane Bigler <janemhar (DOT) com>

>>> infantile scoliosis treatment @groups. com

>>> Sent: Wed, March 24, 2010 10:38:20 AM

>>> Subject: [infantile_scoliosi s] Grace's Urology Appt.

>>>

>>>  

>>> As some of you may have seen on my FB yesterday, we finally had our

>>> consult with urology about Grace's lack of potty training.  As a

>>> quick

>>> overview, Grace is 3 1/2 and we have been trying for over a year

>>> to

>>> potty train, she sits on the potty 3-5 times a day and has NEVER

>>> been

>>> successful at going on the potty.  She can hold her urine for a VERY

>>> long

>>> time.  Sometimes 10-12 hours.  Her ortho surgeon wasn't ready to

>>> broach

>>> the subject of it being related to her spine yet.  As he put it, she

>>> is

>>> ONLY 3.  But the days and months are ticking by and before we know

>>> it,

>>> she'll be 4, then 5.  So I asked for a referral from our

>>> pediatrician.

>>>

>>> Since Grace is in a cast, there wasn't much in the way of actual

>>> evaluation they could do yesterday.  The lady said that if she

>>> didn't

>>> have other " defects " she was born with (Omphalocele

>>> and Scoliosis)  she

>>> would continue to  " wait and see " for another 6-8 months.  But,

>>> since

>>> it

>>> could be related to either of those things, we have to

>>> have invasive

>>> testing done of her bladder.

>>>

>>> The main concern is that it doesn't appear that Grace can feel when she

>>> needs to go and obviously can't control if she goes or not.  The

>>> fear

>>> is that her bladder has to get beyond full before it will finally

>>> trigger to empty.  This would be worse case scenario.  If this is

>>> the

>>> problem, there isn't much they can do.  The only thing we could do

>>> to

>>> help her, is to catherize her on a regular basis, to keep her bladder

>>> from

>>> stretching out, maybe even full time while she's young.  The

>>> doctor

>>> said if that is what the problem is, it will be life long unless

>>> someone

>>> finds a " cure " .

>>>

>>> I know I've asked before, but are there any parents out there

>>> of older

>>> kids that have had similar issues?

>>>

>>> Thanks!

>>>  

>>> Jane

>>>

>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>

>

>

>

>

>

[Guest guest]

I'm sorry Jane..... Noelle is almost 3 1/2 and has been reluctant to train until now..... She's actually catching on to it and we're almost there except for nights. I am writing just to offer my support and prayers for you and Grace. Please keep me posted.- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Jane Bigler <janemhar@...>Subject: Grace's Urology Appt.infantile scoliosis treatment Date: Wednesday, March 24, 2010, 3:38 PM

As some of you may have seen on my FB yesterday, we finally had our consult with urology about Grace's lack of potty training. As a quick overview, Grace is 3 1/2 and we have been trying for over a year to potty train, she sits on the potty 3-5 times a day and has NEVER been successful at going on the potty. She can hold her urine for a VERY long time. Sometimes 10-12 hours. Her ortho surgeon wasn't ready to broach the subject of it being related to her spine yet. As he put it, she is ONLY 3. But the days and months are ticking by and before we know it, she'll be 4, then 5. So I asked for a referral from our pediatrician.

Since Grace is in a cast, there wasn't much in the way of actual evaluation they could do yesterday. The lady said that if she didn't have other "defects" she was born with (Omphalocele and Scoliosis) she would continue to "wait and see" for another 6-8 months. But, since it could be related to either of those things, we have to have invasive testing done of her bladder.

The main concern is that it doesn't appear that Grace can feel when she needs to go and obviously can't control if she goes or not. The fear is that her bladder has to get beyond full before it will finally trigger to empty. This would be worse case scenario. If this is the problem, there isn't much they can do. The only thing we could do to help her, is to catherize her on a regular basis, to keep her bladder from stretching out, maybe even full time while she's young. The doctor said if that is what the problem is, it will be life long unless someone finds a "cure".

I know I've asked before, but are there any parents out there of older kids that have had similar issues?

Thanks!

Jane