Re: 's VCGU

[Guest guest]

,

An Endocrinologist looks at growth, and all things " glandular " in the body,

levels of hormones, etc which is why they would want to be seen if they

suspect early puberty. There are drugs that can be given to delay the puberty

although I am not very familiar with them. Dr. Blake did a TV housecall

(something we have here on our local news) about early puberty and discussed

this very thing with the mom. An endocrinologist is your best bet, maybe the

early puberty and the larger than normal size testicle may be linked? I hope it

is not a tumour and if it is, may it be benign. I will be thinking of you and

hoping you find an endocrinologist as lovely as the one we've got (she's a real

gem!) Expect some measuring, weighing, and possibly some blood work & x rays

(to get 's bone age) from the endo, they need to get a " picture " of

from their point of view. I think it's important for most CHARGErs to be

followed by an endo with all the growth & hormonal problems that seem to pop up.

Best of luck, keep us posted,

~ Weir

Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://personal.nbnet.nb.ca/gweir

ICQ #1426476

" In three words I can sum up everything I've learned about life: it goes on. "

- Frost

's VCGU

I am not sure how to even word this but yesterdays apt turned into a

nightmare. got his vcgu done and he did not do bad at all considering he

had to be cathed. Well they did the vcgu filled his bladder and took the

pictures. When they took the cath out his bladder was to drain but it did not

drain to much at all. Well we got done with the vcgu and went to see the

urologist and the nightmare began. The doctor said that 's bladder was

very large and was not draining right due to him being constipated. We also

found out he has a weak spot on his bladder. I can deal with the constipation

and now is on a laxative for the next year. The doctor said that the

bladder should go down to it's normal size after we get the constipation take

care of. they also gave him a antibiotic to take everyday for the next year

so he does not get a UTI. The doctor went to check out and see how well

his testicle was growing (He only has one.) and said that his testicle was very

large for his age and he might have a tumor on it so we have to get a ultrasound

done on it here soon. I guess I am scared to death about the tumor only

has one testicle and I do not wish for him to loose it or for it to be something

wrose. The Doctor also noticed that is now starting to get pubic hair and

said he is also to young for that and done a bunch of labs on him and now we

must see a endo doctor. Will someone please give me some info on endo doctors.

I do not have much of a clue as to what to expect at this apt. I am saking for

prayer's in hope that does not have a tumor or anything worse. It seems

to be that when we get one thing figured out a new one begans. I does not think

that things will ever slow down. Sorry this is so long and thanks for

listening.

mom to 8years.

[Guest guest]

lisa, sorry to hear the appt. didn't go well. I hope that the enlarged

testicle is " nothing " . nothing is scarier than what-if's if you ask me.

All I can tell you about the endo. is that they take blood, do a bone age

scan (x-ray) and just look him over, measure, weigh, check his back and

posture--of course timmy is only 6.5, so it may be different with .

regardless, I'm wishing you the best.

maria

's VCGU

> I am not sure how to even word this but yesterdays apt turned into a

nightmare. got his vcgu done and he did not do bad at all

considering he had to be cathed. Well they did the vcgu filled his bladder

and took the pictures. When they took the cath out his bladder was to drain

but it did not drain to much at all. Well we got done with the vcgu and

went to see the urologist and the nightmare began. The doctor said that

's bladder was very large and was not draining right due to him being

constipated. We also found out he has a weak spot on his bladder. I can

deal with the constipation and now is on a laxative for the next year.

The doctor said that the bladder should go down to it's normal size after we

get the constipation take care of. they also gave him a antibiotic to

take everyday for the next year so he does not get a UTI. The doctor went

to check out and see how well his testicle was growing (He only has

one.) and said that his testicle was very large for his age and he might

have a tumor on it so we have to get a ultrasound done on it here soon. I

guess I am scared to death about the tumor only has one testicle and I

do not wish for him to loose it or for it to be something wrose. The Doctor

also noticed that is now starting to get pubic hair and said he is

also to young for that and done a bunch of labs on him and now we must see a

endo doctor. Will someone please give me some info on endo doctors. I do

not have much of a clue as to what to expect at this apt. I am saking for

prayer's in hope that does not have a tumor or anything worse. It

seems to be that when we get one thing figured out a new one begans. I does

not think that things will ever slow down. Sorry this is so long and thanks

for listening.

>

> mom to 8years.

>

>

>

[Guest guest]

,

My what you found out. I have no more to add about the

endocrinologist than the others have already shared with you. I honestly

believe all our CHARGE children should be followed by one from early on.

Hopefully you will not have to wait an eternity to get an appointment. Could

the doctor get you in soon?

The only thing I can add is my oldest daughter went into puberty

early. The doctor said that people are going into puberty much earlier for

many reasons, including the environmental issues as well as additives in our

food. He said it is not as rare as it used to be. I don't know if that

helps you at all.

For the antibiotic being taken daily, actually it ends up as

beneficial to him more than just for UTI's. Patty was on it for years and I

do believe it kept other viruses at bay too. That might just have been my

imagination though.

And now being on something to help his bowels, will that change his

system much? I mean if he has been constipated for a while and now that is

changing the sensory feelings there will change as well as his movements and

timing of them. He must be in discomfort there but has lived with it. I am

glad this was found also.

As I know nothing about boys there is not much I can share here.

Please keep us posted as to what goes on. It sounds strange. I wish him all

the best.

Isn't there someone on this list whose sister-in-law is an

endocrinologist?

Take care

Bonnie, Mom to Kris 19, Patty CHARGE 17 and wife to

[Guest guest]

I did not know he was constipated he has not been upset and he has been having

bowel movements I guess this is deep inside somewhere I had no idea. As for the

charge issue has never been diagnosised as having charge but has many

symptoms of it. As for early puberty I am not real worried about that I know

there is medicine out there to help that out, Do you know if it is in pill form

or shot form??

I do not know if the bowel issue will change his system or not I have no clue.

I know they said his bladder was enlarged due to his bowels. My main concer (

and I am concerned about all of it) is the chance that he might have a tumor I

just know this will end up making me sick until I know otherwise. I think we

will be able to get in to see a endocrinologist late june or early july. My

husban and sister keep telling me not to worry but I can't help it, he is my

only child and I love him. I should be getting a call today or tomorrow about

the ultra sound for the testicle I am pretty sure that will be here real soon if

not I am going to throw a big fit until they get him in soon. Thanks you and

everyone else for the concern and the info.

mom to 8years.

Re: 's VCGU

,

My what you found out. I have no more to add about the

endocrinologist than the others have already shared with you. I honestly

believe all our CHARGE children should be followed by one from early on.

Hopefully you will not have to wait an eternity to get an appointment. Could

the doctor get you in soon?

The only thing I can add is my oldest daughter went into puberty

early. The doctor said that people are going into puberty much earlier for

many reasons, including the environmental issues as well as additives in our

food. He said it is not as rare as it used to be. I don't know if that

helps you at all.

For the antibiotic being taken daily, actually it ends up as

beneficial to him more than just for UTI's. Patty was on it for years and I

do believe it kept other viruses at bay too. That might just have been my

imagination though.

And now being on something to help his bowels, will that change his

system much? I mean if he has been constipated for a while and now that is

changing the sensory feelings there will change as well as his movements and

timing of them. He must be in discomfort there but has lived with it. I am

glad this was found also.

As I know nothing about boys there is not much I can share here.

Please keep us posted as to what goes on. It sounds strange. I wish him all

the best.

Isn't there someone on this list whose sister-in-law is an

endocrinologist?

Take care

Bonnie, Mom to Kris 19, Patty CHARGE 17 and wife to

[Guest guest]

,

I will be watching your posts with much interest. My Mark has been

seeing a urologist for the last 2 years due to urinary frequency and

incontinence. He had many test done but they said his bladder was the

opposite small!! Then incidentally they were concerned about undescended

testicles. Well, he had that surgery once as a baby. He is very small in that

area. So guess what he had to have that surgery again at 17 last Aug. We are

still dealing with the bladder problems but I had been wondering myself if it

could have any relation to his endocrine function. We see the urologist in

July and I was going to bring that up. Please let me know how you make out

with all the testing. My thoughts are with you.

V.

[Guest guest]

why did he need a second surgery?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

why did he need a second surgery?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

I sounded like he needed his testicals operated on twice.......?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

I sounded like he needed his testicals operated on twice.......?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

I am not sure what you are talking about.. has had many surgeries. Some

did take more than one surgery in fact alot of them took more than one surgery

to get the problem fixed. Just let me know which surgery you are talking about

and I will let you know.

mom to 8years.

Re: 's VCGU

why did he need a second surgery?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

The first operation was done at the same time they took his kidney out. They

did not remove either of the testicles at that time instead they put some kind

of clamp on the arties of the testicles to try to make them grow and thrive.

But that did not work so they took out the one testicle and brought down the

other one. Both testicles were very high and not doing to good at all in fact

we were lucky that they were able to save the one testicle. I just do not

understand why babies and kids have to suffer so much it is so hard and now I am

scared to death as to what they may find. I guess it is all up to god now.

mom to 8years.

Re: 's VCGU

I sounded like he needed his testicals operated on twice.......?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

The first operation was done at the same time they took his kidney out. They

did not remove either of the testicles at that time instead they put some kind

of clamp on the arties of the testicles to try to make them grow and thrive.

But that did not work so they took out the one testicle and brought down the

other one. Both testicles were very high and not doing to good at all in fact

we were lucky that they were able to save the one testicle. I just do not

understand why babies and kids have to suffer so much it is so hard and now I am

scared to death as to what they may find. I guess it is all up to god now.

mom to 8years.

Re: 's VCGU

I sounded like he needed his testicals operated on twice.......?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

, have been reading all about , can feel your pain, in such

situations its best to live one day at a time, keep yourself so busy that there

is no time left to think and be prepared for <whatever will be, will be the

futures not ours to see, Que Sera Sera >

With so many of us praying for him, Iam sure God will listen.

Pushpa grandma to Aman 7 months

[Guest guest]

, have been reading all about , can feel your pain, in such

situations its best to live one day at a time, keep yourself so busy that there

is no time left to think and be prepared for <whatever will be, will be the

futures not ours to see, Que Sera Sera >

With so many of us praying for him, Iam sure God will listen.

Pushpa grandma to Aman 7 months

[Guest guest]

, have been reading all about , can feel your pain, in such

situations its best to live one day at a time, keep yourself so busy that there

is no time left to think and be prepared for <whatever will be, will be the

futures not ours to see, Que Sera Sera >

With so many of us praying for him, Iam sure God will listen.

Pushpa grandma to Aman 7 months

[Guest guest]

Thank you Pushpa, What you said is easier said than done though, How can I as

a mother not think about it?? I am trying to keep busy and not think about it

but I can't help it. I know it is out of my hands and in gods now so time will

tell what happens from here. Thanks for all the prayers from everone I think we

will need them.

mom to 8years.

Re: 's VCGU

, have been reading all about , can feel your pain, in such

situations its best to live one day at a time, keep yourself so busy that there

is no time left to think and be prepared for <whatever will be, will be the

futures not ours to see, Que Sera Sera >

With so many of us praying for him, Iam sure God will listen.

Pushpa grandma to Aman 7 months

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-.

[Guest guest]

Thank you Pushpa, What you said is easier said than done though, How can I as

a mother not think about it?? I am trying to keep busy and not think about it

but I can't help it. I know it is out of my hands and in gods now so time will

tell what happens from here. Thanks for all the prayers from everone I think we

will need them.

mom to 8years.

Re: 's VCGU

, have been reading all about , can feel your pain, in such

situations its best to live one day at a time, keep yourself so busy that there

is no time left to think and be prepared for <whatever will be, will be the

futures not ours to see, Que Sera Sera >

With so many of us praying for him, Iam sure God will listen.

Pushpa grandma to Aman 7 months

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-.

[Guest guest]

my prayers are with you and . Hopefully everything will come out

ok.

Sue grandma to Sierra 24 days old

Re: 's VCGU

Thank you Pushpa, What you said is easier said than done though, How can

I as a mother not think about it?? I am trying to keep busy and not think

about it but I can't help it. I know it is out of my hands and in gods now

so time will tell what happens from here. Thanks for all the prayers from

everone I think we will need them.

mom to 8years.

Re: 's VCGU

, have been reading all about , can feel your pain, in such

situations its best to live one day at a time, keep yourself so busy that

there is no time left to think and be prepared for <whatever will be, will

be the futures not ours to see, Que Sera Sera >

With so many of us praying for him, Iam sure God will listen.

Pushpa grandma to Aman 7 months

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-.

[Guest guest]

,

I'm thinking about you all and praying that it is nothing sinister.

Big hugs being sent over the ocean.

Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE

Dumfries, Scotland

[Guest guest]

,

I'm thinking about you all and praying that it is nothing sinister.

Big hugs being sent over the ocean.

Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE

Dumfries, Scotland

[Guest guest]

,

I'm thinking about you all and praying that it is nothing sinister.

Big hugs being sent over the ocean.

Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE

Dumfries, Scotland

[Guest guest]

, let us all pray to the Almighty as <In this world of possibilities,

one can expect a possible event to become a possibilty, but the most wonderful

thing is that there is also a possibility of an impossible event becoming

possible>LOL for , Pushpa grandma to Aman, 7 months.