Lynna Grace's GI visit today.......

[Guest guest]

Lynna Grace had her liver and gallbladder ultrasound performed last Wednesday and blood work at the same time. She saw her GI today and we were told she is doing great. I told them that she is having abdominal pain daily and the doctor said well her enzymes are stable and the ultrasound showed nothing. The doctor said we can put her on "Prevacid" for the next 3-4 months and then he will see her back then and another words she is doing great. Not in my eyes, she complains of abdominal pains almost daily. My question is, "just how much can they tell what is going on with the PSC with an ultrasound"? I personally didn't think they could tell much with ultrasounds because in the two years it took them to make a diagnosis the ultrasounds showed nothing, they were strickly going on her liver enzyemes being so elevated. I just don't feel that she is getting the treatment she is

entitled to. When the doctor's nurse was taking her vitals this morning, Lynna Grace kept saying I have Primary Sclerosing Cholangitis. Now in my mind the doctor's nurse should know what that is and instead looked at me and said "what's that". I don't know maybe I am over reacting but my daughter has been a patient of this doctor for now going on almost 3 years and I would think by now his nurse has some clue as to why my daughter is there! Again, does anyone know of a great GI in the South Florida area? Desperately looking for a GI who is more familiar with PSC. The doctor himself told me he is only treating 2 patients one of which is my daughter. Just don't have much faith in the numbers. Thank you all for reading........ (mommy to Lynna Grace 8yrs, PSC

04/05) __________________________________________________

[Guest guest]

,

First of all I am not a doctor, I am just

talking out of my own experience and from what I have read on this forum. I

think that the ultrasound is not for the PSC as such, but more to check for

symptoms or side effects of the PSC (enlarged liver, enlarged spleen, even

tumors). It also might be that they were looking for other reason for her

abdominal pain (gallstones, infections, tumors). The strictures in the bile

ducts do not show up on the ultrasound. They can see if the bile ducts are

bigger than normal, they can see when there are stones in the bile ducts, but

they can't see the strictures inside. The combination of the good LFTs and

nothing bad on the ultrasound is apparently enough cause for the doctor to

think your daughter is fine. If I would be suffering from pain (or my child) I personally

don't think this would suffice for me. I would go for a second opinion and

preferably from a good doctor with more than two PSC patients.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On

Behalf Of s

Sent: Tuesday, November 06, 2007

05:59

To:

Subject: Lynna

Grace's GI visit today.......

Lynna Grace had her liver and gallbladder ultrasound performed last

Wednesday and blood work at the same time. She saw her GI today and we

were told she is doing great. I told them that she is having abdominal

pain daily and the doctor said well her enzymes are stable and the ultrasound

showed nothing. The doctor said we can put her on " Prevacid "

for the next 3-4 months and then he will see her back then and another words

she is doing great. Not in my eyes, she complains of abdominal pains

almost daily.

My question is, " just how much can they tell what is going on with

the PSC with an ultrasound " ? I personally didn't think they could

tell much with ultrasounds because in the two years it took them to make a

diagnosis the ultrasounds showed nothing, they were strickly going on her liver

enzyemes being so elevated.

I just don't feel that she is getting the treatment she is entitled

to. When the doctor's nurse was taking her vitals this morning, Lynna

Grace kept saying I have Primary Sclerosing Cholangitis. Now in my mind

the doctor's nurse should know what that is and instead looked at me and said

" what's that " . I don't know maybe I am over reacting but my

daughter has been a patient of this doctor for now going on almost 3 years

and I would think by now his nurse has some clue as to why my daughter is

there!

Again, does anyone know of a great GI in the South

Florida area? Desperately looking for a GI who is more

familiar with PSC. The doctor himself told me he is only treating 2

patients one of which is my daughter. Just don't have much faith in the

numbers.

Thank you all for reading........

(mommy to Lynna Grace 8yrs, PSC 04/05)

__________________________________________________

[Guest guest]

hi -

I can very much relate to frustrations with GI doctors and their

staff. I can highly recommend www.liverfamilies.org a great support

group for those with kids with liver disease. There will be at least a

few on the site who can make recommendations for good GIs in south

Florida and many who can help with your questions and provide support

in many ways.

Lori

lucky om blessed with wonderfully wild triplets including Braden with

short bowel syndrome, PSC, immune deficiency, FAP

>

> Lynna Grace had her liver and gallbladder ultrasound performed last

Wednesday and blood work at the same time. She saw her GI today and

we were told she is doing great. I told them that she is having

abdominal pain daily and the doctor said well her enzymes are stable

and the ultrasound showed nothing. The doctor said we can put her on

" Prevacid " for the next 3-4 months and then he will see her back then

and another words she is doing great. Not in my eyes, she complains

of abdominal pains almost daily.

>

> My question is, " just how much can they tell what is going on with

the PSC with an ultrasound " ? I personally didn't think they could

tell much with ultrasounds because in the two years it took them to

make a diagnosis the ultrasounds showed nothing, they were strickly

going on her liver enzyemes being so elevated.

>

> I just don't feel that she is getting the treatment she is

entitled to. When the doctor's nurse was taking her vitals this

morning, Lynna Grace kept saying I have Primary Sclerosing

Cholangitis. Now in my mind the doctor's nurse should know what that

is and instead looked at me and said " what's that " . I don't know

maybe I am over reacting but my daughter has been a patient of this

doctor for now going on almost 3 years and I would think by now his

nurse has some clue as to why my daughter is there!

>

> Again, does anyone know of a great GI in the South Florida area?

Desperately looking for a GI who is more familiar with PSC. The

doctor himself told me he is only treating 2 patients one of which is

my daughter. Just don't have much faith in the numbers.

>

> Thank you all for reading........

>

>

> (mommy to Lynna Grace 8yrs, PSC 04/05)

>

> __________________________________________________

>

[Guest guest]

I had gone to the Mayo Clinic in ville, FL for a second opinion and met with a Dr. Picco. It may be worth the drive for you. s wrote: Lynna Grace had her liver and gallbladder ultrasound performed last Wednesday and blood work at the same time. She saw her GI today and we were told she is doing great. I told them that she is having abdominal pain daily and the doctor said well her enzymes are stable and the ultrasound showed nothing. The doctor said we can put her on "Prevacid" for the

next 3-4 months and then he will see her back then and another words she is doing great. Not in my eyes, she complains of abdominal pains almost daily. My question is, "just how much can they tell what is going on with the PSC with an ultrasound"? I personally didn't think they could tell much with ultrasounds because in the two years it took them to make a diagnosis the ultrasounds showed nothing, they were strickly going on her liver enzyemes being so elevated. I just don't feel that she is getting the treatment she is entitled to. When the doctor's nurse was taking her vitals this morning, Lynna Grace kept saying I have Primary Sclerosing Cholangitis. Now in my mind the doctor's nurse should know what that is and instead looked at me and said "what's that". I don't know maybe I am over reacting but my daughter has been a patient of this doctor for now going on almost 3 years

and I would think by now his nurse has some clue as to why my daughter is there! Again, does anyone know of a great GI in the South Florida area? Desperately looking for a GI who is more familiar with PSC. The doctor himself told me he is only treating 2 patients one of which is my daughter. Just don't have much faith in the numbers. Thank you all for reading........ (mommy to Lynna Grace 8yrs, PSC 04/05) __________________________________________________

[Guest guest]

Hi ,

I would seek either a pediatric GI, OR a pediatric liver specialist.

My son had elevated liver enzymes.

He had an ultrasound in Nov 06 and it showed nothing abnormal.

After that he had a liver biopsy Feb 07 and then an MRCP 6/07. We

travel 3 hours to see our Ped GI and Ped Hepatologist.

I agree that doing the ultrasound would show an enlarged liver or

problems with other organs, but the MRCP will show more liver

abnormalities.

I would urge you to look for a Dr that sees more than 2 patients

with PSC, even if it means traveling.

I hope you find the source of her pain and she can get relief.

, mom to Miles, age 6, UC, Small Duct PSC

>

> Lynna Grace had her liver and gallbladder ultrasound performed

last Wednesday and blood work at the same time. She saw her GI

today and we were told she is doing great. I told them that she is

having abdominal pain daily and the doctor said well her enzymes are

stable and the ultrasound showed nothing. The doctor said we can

put her on " Prevacid " for the next 3-4 months and then he will see

her back then and another words she is doing great. Not in my eyes,

she complains of abdominal pains almost daily.

>

>>

[Guest guest]

My son had abdomenal pain daily for 8 years. He lived on narcotics. He was hospitalized many times for pain management. Since his tx 2 years ago he has not had pain. Jami'e pediatric hep is in Boston. She told me there are not many out there. Most Drs have only read about PSC. They shake their head and tell you how sorry they are. If you were closer to this area I would definitely recommend this team at Boston Children's. You may need to travel to get the best. We drove 5 hours each direction to see Dr Jonas. Once we got baseline info, 's local Dr spoke on the phone with Dr Jonas so they could come up with a plan. They communicated everytime there was something his pediatrician could not handle. Can you do something like that? Good luck. How old is your daughter? Marti s wrote: Lynna Grace had her liver and gallbladder ultrasound performed last Wednesday and blood work at the same time. She saw her GI today and we were told she is doing great. I told them that she is having abdominal pain daily and the doctor said well her enzymes are stable and the ultrasound showed nothing. The doctor said we can put her on "Prevacid" for the next 3-4 months and then he will see her back then and another words she is doing great. Not in my eyes, she complains of abdominal pains almost daily. My question is, "just how much can they tell what is going on with the PSC with an

ultrasound"? I personally didn't think they could tell much with ultrasounds because in the two years it took them to make a diagnosis the ultrasounds showed nothing, they were strickly going on her liver enzyemes being so elevated. I just don't feel that she is getting the treatment she is entitled to. When the doctor's nurse was taking her vitals this morning, Lynna Grace kept saying I have Primary Sclerosing Cholangitis. Now in my mind the doctor's nurse should know what that is and instead looked at me and said "what's that". I don't know maybe I am over reacting but my daughter has been a patient of this doctor for now going on almost 3 years and I would think by now his nurse has some clue as to why my daughter is there! Again, does anyone know of a great GI in the South Florida area? Desperately looking for a GI who is more familiar with PSC. The doctor himself

told me he is only treating 2 patients one of which is my daughter. Just don't have much faith in the numbers. Thank you all for reading........ (mommy to Lynna Grace 8yrs, PSC 04/05) __________________________________________________