Hi all back again...VATER, sacral dimples and lots o' questions!

April 9, 2002

Hello all,

Well, it's good to be back here again...sorry if I've been such a fair

weather friend! I went back to school and didn't have time for much

else! I am proud to say, though, that I am now a medical assistant!

In the meanwhile, I've built up some *burning* questions I need to ask:

SACRAL DIMPLES

Okay, I looked through the archives and found that sacral dimples were

discussed. My son has one, and I just had to ask his

neurologist WHY every doctor we've ever met makes some comment about

it, but leaves it at that. I've learned that, if deep enough, a sacral

dimple could indicate a tethered spinal cord and could cause

incontinence problems. We have an upcoming appointment with his

developmental pediatrician and I plan to investigate this further

after a frustrating 3 YEARS of potty training with limited success.

will indicate the urge to go, will get on the toilet and pee,

say he's finished, then five minutes later have a soaked Pull-up. This

has gone on for nearly a year and a half. The urologist has said he

has nothing wrong (only checked his penis) and probably just doesn't

want to be potty trained..however, if that was the case, he'd probably

just outright refuse to even go on the toilet at all, and this isn't

happening.

VATER

Over time, my son has been exhibiting a lot more features of VATER,

namely an anteriorly placed anus, renal abnormalities (duplication of

the ureter and cortical defect), cardiac problems (ASD), flat feet,

and single umbilical artery. I know it's probably been discussed

before, but are there children who have been diagnosed both VATER and

CHARGE?

Thanks in advance to anyone who answers. It's nice to be back

here...on another positive note, I checked into Minnow's CHARGE

message board and found another CHARGEr here in Hawaii! How exciting!

I've emailed her my phone number and I'm hoping that she'll call me.

This will be the first time I've ever met another CHARGE family since

embarking on this journey!

Wife of

Mom to Marina 8, Jr. 6 (CHARGE, cerebral palsy, epilepsy),

Tabitha 2, and EDD #4 11/08!! In beautiful Hawaii

April 9, 2002

,

Welcome back and congratulations on the new job. You have been busy

We too are going through the potty training thing with Jack. He also has

quite a deep sacral dimple and although he will wee in the potty he won't say

when he needs to go and is happy to wee in his pull-ups. I'll say to him 'are

you wet ?' and he'll say 'no' but when I check his pull-ups they are wet !!!

I think it's going to be a long,slow process.

Elaine, mum to Elise (9yrs) & Jack (4.5yrs) CHaRGE

Dumfries, Scotland

April 9, 2002

,

Welcome back and congratulations on the new job. You have been busy

We too are going through the potty training thing with Jack. He also has

quite a deep sacral dimple and although he will wee in the potty he won't say

when he needs to go and is happy to wee in his pull-ups. I'll say to him 'are

you wet ?' and he'll say 'no' but when I check his pull-ups they are wet !!!

I think it's going to be a long,slow process.

Elaine, mum to Elise (9yrs) & Jack (4.5yrs) CHaRGE

Dumfries, Scotland

April 9, 2002

,

Welcome back and congratulations on the new job. You have been busy

We too are going through the potty training thing with Jack. He also has

quite a deep sacral dimple and although he will wee in the potty he won't say

when he needs to go and is happy to wee in his pull-ups. I'll say to him 'are

you wet ?' and he'll say 'no' but when I check his pull-ups they are wet !!!

I think it's going to be a long,slow process.

Elaine, mum to Elise (9yrs) & Jack (4.5yrs) CHaRGE

Dumfries, Scotland

April 9, 2002

,

I am sooo glad to see you back.

There is a charge child who has a sibling with a tethered spinal cord.

I'm sure others will add their input here as well. We had great success

with toilet training after implementing some exercises through the HANDLE

Institute to strengthen sphincters. This helped within a month for Kendra

after

years of trying. She could tell when she had to go to the bathroom, hold

it and

then wait to get to a bathroom after the exercises. She only had a couple of

'accidents' after the exercises clicked. These exercises were very helpful

to her.

But for each of our kids there could be lots of different factors going on

of course.

Congratulations on finishing school. Wow, you would be a great medical

assitant

to run into on an appointment with children with charge.

How is doing with school and language and all those issues?

Welcome back!!

Mom to At 12:28 AM 4/9/02 +0000, you wrote:

>Hello all,

>Well, it's good to be back here again...sorry if I've been such a fair

>weather friend! I went back to school and didn't have time for much

>else! I am proud to say, though, that I am now a medical assistant!

>In the meanwhile, I've built up some *burning* questions I need to ask:

>

>SACRAL DIMPLES

>

>Okay, I looked through the archives and found that sacral dimples were

>discussed. My son has one, and I just had to ask his

>neurologist WHY every doctor we've ever met makes some comment about

>it, but leaves it at that. I've learned that, if deep enough, a sacral

>dimple could indicate a tethered spinal cord and could cause

>incontinence problems. We have an upcoming appointment with his

>developmental pediatrician and I plan to investigate this further

>after a frustrating 3 YEARS of potty training with limited success.

> will indicate the urge to go, will get on the toilet and pee,

>say he's finished, then five minutes later have a soaked Pull-up. This

>has gone on for nearly a year and a half. The urologist has said he

>has nothing wrong (only checked his penis) and probably just doesn't

>want to be potty trained..however, if that was the case, he'd probably

>just outright refuse to even go on the toilet at all, and this isn't

>happening.

>

>VATER

>

>Over time, my son has been exhibiting a lot more features of VATER,

>namely an anteriorly placed anus, renal abnormalities (duplication of

>the ureter and cortical defect), cardiac problems (ASD), flat feet,

>and single umbilical artery. I know it's probably been discussed

>before, but are there children who have been diagnosed both VATER and

>CHARGE?

>

>Thanks in advance to anyone who answers. It's nice to be back

>here...on another positive note, I checked into Minnow's CHARGE

>message board and found another CHARGEr here in Hawaii! How exciting!

>I've emailed her my phone number and I'm hoping that she'll call me.

>This will be the first time I've ever met another CHARGE family since

>embarking on this journey!

>

>Wife of

>Mom to Marina 8, Jr. 6 (CHARGE, cerebral palsy, epilepsy),

>Tabitha 2, and EDD #4 11/08!! In beautiful Hawaii

>

>Membership of this email support groups does not constitute membership in

>the CHARGE Syndrome Foundation.

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter)

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>6th International CHARGE Syndrome Conference, Cleveland, Ohio,

>July 25-27, 2003. Information will be available at our website

>www.chargesyndrome.org or by calling 1-.

>

April 9, 2002