Re: Daughter graduating to adult care.

[Guest guest]

Ouch. I weighed around 8 lbs.

Arne

P.S Amber weighed 11lbs.10oz at birth...any other large babies out there...maybe

there is a link? (UC/PSC) Just a thought. Have a good day everyone.

Kim

mom of Amber

UC/05 PSC/06

[Guest guest]

I don't know if i am alone here or that in the USA it may be different

because my son was diagnosed a couple of months before he turned 18.

He turned 19 this June and he still sees the same GI at the Peds G! of

the university hospital who started with him. Does anyway else here

have their children diagnosed before 18 being shifted to adult care

after they turn 18? Wondering if we are are missing out on some care

because he still goes to the Peds specialists.

On another note, my son travelled alone to the UK for about 5 weeks in

May. He came back to see the doctor and lab work showed that his

Bilirubin which has been in the range of 2.0-2.3 for so long now was

down to 1.6. So is it my food here in the USA which is affecting his

diet and other blood parameters? Coming from a country where fruits

and vegetables have practically not much pumped into them and chicken

and other meats come from animals generally not fed to grow so fast

(not counting the preservatives added before sent to the market), I

complain enough about all the junk we injest here in the USA. If only

one can afford to eat only organic food?

Any ideas?

Rita (mother to Nii. PSC/UC 2005)

[Guest guest]

This is a combination of personal preference, hospital policy and

insurance coverage.

Children's Memorial in Chicago routinely follows its complicated kids

well into adulthood. And they see new adults dx with what are thought

of as primarily childhood diseases (leukemia, for example), There's

even an adults-only weekly cystic fibrosis clinic.

It's not unusual for us to see 20something and 30someting adults in the

OR or ICU. (It's also not unusual to see babies being brought in by

parents who still need pediatricians themselves.) And with many of

today's young teenagers reaching adult size, the hospital has to stock

large-size gowns and equipment anyway.

We've told them Quantell will keep going there at least until he

outgrows their dancing-dog pajamas -- which may not happen before his

30th birthday <g>

Pam

(mom to Quantell, 16, dx 1996, tx 2001; AIH-recurrent PSC overlap, 2006)

[Guest guest]

This is a combination of personal preference, hospital policy and

insurance coverage.

Children's Memorial in Chicago routinely follows its complicated kids

well into adulthood. And they see new adults dx with what are thought

of as primarily childhood diseases (leukemia, for example), There's

even an adults-only weekly cystic fibrosis clinic.

It's not unusual for us to see 20something and 30someting adults in the

OR or ICU. (It's also not unusual to see babies being brought in by

parents who still need pediatricians themselves.) And with many of

today's young teenagers reaching adult size, the hospital has to stock

large-size gowns and equipment anyway.

We've told them Quantell will keep going there at least until he

outgrows their dancing-dog pajamas -- which may not happen before his

30th birthday <g>

Pam

(mom to Quantell, 16, dx 1996, tx 2001; AIH-recurrent PSC overlap, 2006)

[Guest guest]

Kim,

I believe there are quite a number of people who routinely see the GI.

My son sees the GI routinely and has only met the hep once since his

diagnosis a year ago when he did the liver biopsy. Even his seeing

him again was because the GI said he some of my questions will be

better answered by the hep and so asked him also to see us. However

we see the GI at the University hospital and I know the hep is part of

the team including my son's GI and so they meet and discuss results

when necessary. So although my son may not see the hep regularly, I

believe they do communicate. I don't know what the setup is with you

and how it all works but I am sure others much better informed may

also give you some advice about seeing a hep and/or GI.

Say happy birthday to your daughter on Friday for me. Is she starting

college this fall?

Rita

[Guest guest]

Kim,

I believe there are quite a number of people who routinely see the GI.

My son sees the GI routinely and has only met the hep once since his

diagnosis a year ago when he did the liver biopsy. Even his seeing

him again was because the GI said he some of my questions will be

better answered by the hep and so asked him also to see us. However

we see the GI at the University hospital and I know the hep is part of

the team including my son's GI and so they meet and discuss results

when necessary. So although my son may not see the hep regularly, I

believe they do communicate. I don't know what the setup is with you

and how it all works but I am sure others much better informed may

also give you some advice about seeing a hep and/or GI.

Say happy birthday to your daughter on Friday for me. Is she starting

college this fall?

Rita

[Guest guest]

Kim,

I believe there are quite a number of people who routinely see the GI.

My son sees the GI routinely and has only met the hep once since his

diagnosis a year ago when he did the liver biopsy. Even his seeing

him again was because the GI said he some of my questions will be

better answered by the hep and so asked him also to see us. However

we see the GI at the University hospital and I know the hep is part of

the team including my son's GI and so they meet and discuss results

when necessary. So although my son may not see the hep regularly, I

believe they do communicate. I don't know what the setup is with you

and how it all works but I am sure others much better informed may

also give you some advice about seeing a hep and/or GI.

Say happy birthday to your daughter on Friday for me. Is she starting

college this fall?

Rita

[Guest guest]

Kim,

Her dreams will come true whatever she wishes to do. There is a God.

My son wants to do something in the health professions and will be

starting his sophomore year in the fall. He is at the University of

Florida.

Have a great day tomorrow.

Rita