Re: We messed up I am afraid.

[Guest guest]

It sounds like you did all the things you could do. You will probably find that you did everything right, and she will be fine. My daughter has yearly VCUG's as well, and I know that can be very stressful. How did you get a Dr. to agree to sedation? My daughter's Dr's have categorically refused ANY kind of sedation for the procedure. She has had 4 so far - all without sedation - and will still need another, when the year is up (or after the surgery, if that is what we choose.) I would love to hear your insights on this. Thanks,

Suzie in AZ

We messed up I am afraid.

Hi Everyone,

We stopped at the Golden Corral tonight after her VCUG and were there at a very busy time unfortunately and so I am not sure if I got accurate answers after reading some of the post when we got home.

She had a couple of bites of steak and the salmon for dinner after I asked if the marinades contained gluten ingredients or not. She had the plain salads with no dressings since she doesn’t like dressings anyway and they had very clean salad bars from what I could see. I did get her some jello for dessert and while the pan in the bar had crumbs from someone dropping something on it but they were wonderful about giving me a dish out of a new dish that was never on the bar.

I guess we will see how she does the next couple of days. The reason we were looking for a place to eat was that our trip is 1½ hour away from where we live and being in town all day is not fun when we are all hungry. She was not able to eat this morning at all because she was sedated at 1 and we didn’t want to get her up to try to get her to eat and have a hungry tired baby on our hands. So she was pretty hungry when we ate dinner. I also hope she will not react to any possible gluten since she is at risk for a UTI as it is.

She did do great and we are done with this test now for a year! J That is a blessing and we cannot wait for the day she is done with them and the problems are taken care of!

Thank you all for your information.

[Guest guest]

I Suzie,

We have done several VCUG’s on our daughter and the first doctor refused

to sedate her at 4 months and told us we should find a doctor to sedate

her. Well I refused to have her

sedated and it worked well.

However now she is over 2 and that is not really an option! With her second one she had a Nuclear Medicine

test so it required sedation. Our

family doctor then ordered the following 2 and was willing to sedate her. The hospital here suggest you have them

sedated to get the best study you can so it has never been a question of not

having her sedated after the first one.

Are you working with a family doctor or an urologist? Do they give her anything at all or do

they just have her go with out any medication? With our little one she is not out for the whole ordeal but the

Versaid (sp?) has been wonderful but doesn’t knock her out. They used Chloral hydrate for the first

two sedations and that was a nightmare to go through with her.

They have a new procedure they can offer called Deflux. Have you heard of this at all? I take it she has reflux that is why

they are doing the VCUG’s? It is

an outpatient procedure that is as easy as putting tubes in their ears! We did this twice with our little one

and both times it failed. L I would

try it the first time again but if I could do it again I wouldn’t do it the

second time personally. But that

is also because she had them both fail.

She was pretty sick during this time and on antibiotics so much. We also did not have the Celiac

diagnosis for her so that just added another problem.

Is your daughter on the daily antibiotics then? How is she doing with that? Does she also have Celiac Disease? Also do you have other children and did

they have reflux problems? Our 2

year old is the only one out of the 4 that has had it that we know of. She has been our hardest child yet for

medical stuff! But maybe now we

are on the right track.

You said that you might choose surgery. What surgery would you consider? Reimplanting the urethra or the Deflux or is there another

option? What grade is her reflux

and is it on both sides? Has she

had infections while on antibiotics?

Sorry to ask so many questions but I don’t know of two many people who

understand this problem and can relate.

I would like to hear more of your story so we can compare notes.

Also where do they do the VCUG’s?

The hospital staff is usually there for sedating a child but if it is

done in the doctor’s office they might not have the staff. I find it depends on where you are if

they offer the extra services.

Also if it is in the hospital how big is the hospital? We found our experience is MUCH better

with using one hospital over the other since they have more kids go

through.

Also are you using a pediatric urologist? And is he actually a pediatric urologist or does he have an

interest? We found that if you

have a pediatric doctor that actually does a fair amount of pediatric patients

they are a lot more willing to go the extra mile and do things like sedation

that make the experience more bearable.

Have you also asked him why he is refusing?

I am sorry that this is long and I hope it makes sense. I am so tired and can hardly put two

thoughts together. Hope you can

get some good answers and can ask the questions that will get the right answers

for you. I can tell you we have

had frustration with doctors that will not listen and do things we think are

important. We have been to 4 urologists

now and the only reason we are not with #3 is because he is 600 miles

away. However the one we have now

seems wonderful!

I hope this all helps.

[Guest guest]

Though I can't provide any insight, I felt the need to respond. I am

a newly dx celiac...april 9 to be exact......At age 41 and overwieght

I never would have guessed that I had celiac and as i learn more and

more about this disease/condition I realize that I had it for many

years and it went undx. like many others. I as soo grateful for all

the info. that I get here on Silly Yak...you all are the best. But

as I read the postings and think back on my life and the medical

issues I had and even the most recent ones, I am surprised at the

similarities to many other celiacs. The road to my dx. started in

March 2004 when I experienced severe leg pain and swelling. They

made me stop taking my birthcontrol saying it was superficial blood

clots. Though there wasn't any way to def. prove it was, the dx came

by process of elimination. Blood tests showed my anemia and you all

know how the rest of the story goes. Today I was reading my mail from

Silly Yaks I came upon yet another similarity. I was born with

urethral reflux and have 2 uterers coming from my one kidney. For

the most part I wore a leg bag till i was 6 and old and strong enough

to operate. And yes lived on antibiotics all that time. Is there a

correlation between reflux and celiac? Sorry for sounding so stupid

but I am new to all of this.

Dina

In SillyYaks , " Suzie Eckard " <seckard@c...> wrote:

> It sounds like you did all the things you could do. You will

probably find that you did everything right, and she will be fine.

My daughter has yearly VCUG's as well, and I know that can be very

stressful. How did you get a Dr. to agree to sedation? My

daughter's Dr's have categorically refused ANY kind of sedation for

the procedure. She has had 4 so far - all without sedation - and

will still need another, when the year is up (or after the surgery,

if that is what we choose.) I would love to hear your insights on

this. Thanks,

> Suzie in AZ

> We messed up I am afraid.

>

>

> Hi Everyone,

>

> We stopped at the Golden Corral tonight after her VCUG and were

there at a very busy time unfortunately and so I am not sure if I got

accurate answers after reading some of the post when we got home.

>

> She had a couple of bites of steak and the salmon for dinner

after I asked if the marinades contained gluten ingredients or not.

She had the plain salads with no dressings since she doesn't like

dressings anyway and they had very clean salad bars from what I could

see. I did get her some jello for dessert and while the pan in the

bar had crumbs from someone dropping something on it but they were

wonderful about giving me a dish out of a new dish that was never on

the bar.

>

> I guess we will see how she does the next couple of days. The

reason we were looking for a place to eat was that our trip is 1½

hour away from where we live and being in town all day is not fun

when we are all hungry. She was not able to eat this morning at all

because she was sedated at 1 and we didn't want to get her up to try

to get her to eat and have a hungry tired baby on our hands. So she

was pretty hungry when we ate dinner. I also hope she will not react

to any possible gluten since she is at risk for a UTI as it is.

>

> She did do great and we are done with this test now for a year!

J That is a blessing and we cannot wait for the day she is done with

them and the problems are taken care of!

>

> Thank you all for your information.

>

>

>

[Guest guest]

Dina,

No question is ever stupid. That's one of the ways we learn. I

learn things from our wonderful SillyYaks members too. Thanks to

all of you who share information & experiences so that others can

benefit. Cheers to you, SillyYaks! ~Melonie

> > It sounds like you did all the things you could do. You will

> probably find that you did everything right, and she will be

fine.

> My daughter has yearly VCUG's as well, and I know that can be very

> stressful. How did you get a Dr. to agree to sedation? My

> daughter's Dr's have categorically refused ANY kind of sedation

for

> the procedure. She has had 4 so far - all without sedation - and

> will still need another, when the year is up (or after the

surgery,

> if that is what we choose.) I would love to hear your insights on

> this. Thanks,

> > Suzie in AZ

> > We messed up I am afraid.

> >

> >

> > Hi Everyone,

> >

> > We stopped at the Golden Corral tonight after her VCUG and

were

> there at a very busy time unfortunately and so I am not sure if I

got

> accurate answers after reading some of the post when we got home.

> >

> > She had a couple of bites of steak and the salmon for dinner

> after I asked if the marinades contained gluten ingredients or

not.

> She had the plain salads with no dressings since she doesn't like

> dressings anyway and they had very clean salad bars from what I

could

> see. I did get her some jello for dessert and while the pan in

the

> bar had crumbs from someone dropping something on it but they were

> wonderful about giving me a dish out of a new dish that was never

on

> the bar.

> >

> > I guess we will see how she does the next couple of days. The

> reason we were looking for a place to eat was that our trip is 1½

> hour away from where we live and being in town all day is not fun

> when we are all hungry. She was not able to eat this morning at

all

> because she was sedated at 1 and we didn't want to get her up to

try

> to get her to eat and have a hungry tired baby on our hands. So

she

> was pretty hungry when we ate dinner. I also hope she will not

react

> to any possible gluten since she is at risk for a UTI as it is.

> >

> > She did do great and we are done with this test now for a

year!

> J That is a blessing and we cannot wait for the day she is done

with

> them and the problems are taken care of!

> >

> > Thank you all for your information.

> >

> >

> >