To Kimber and update on Jackie

[Guest guest]

Thanks Kimber,

I will give her that hug. She is still feeling bad. The nurse

practioner called from the new pediatric GI, and said that her blood

looks fine, amylase were 16 and her lipase were 28, do these seem low

to you?. I am wondering if the burn out process is almost here and

they just say well the bloodwork looks good, everything is normal.

Her xrays and everything looks fine. I asked if their radiologist

read what the radiologist said about the pancreas being atrophied and

she didn't see the paper down in the bottom of the xray envelope and

she would go look for it. In which I told the doc and this nurse

practioner about this...they wrote it down but didn't bother checking

into it. Everything is always " normal " with tests...then they go in

with ERCP and find closed ducts, small ducts and a damaged pancreas.

She also said her doc would talk to Dr. Cotton when he gets back from

Australia at the beginning of Nov. So anyways, I guess I am

frustrated, here I have to deal with everything being " normal " and

she is hurting bad lately. I guess normal is good but I am thinking

they just don't see something. I don't know. I will wait until they

talk with Dr. Cotton and see how that goes. At that point who knows,

maybe I should just contact Dr. Sutherland.

Thanks for your support,

> ,

> I'm sorry Jackie is having a bad day. Give her a hug from

> me. Hope it makes her feel some better..

> Kimber

>

[Guest guest]

,

the problem with those " normals " is that you can have normal

Amylase and Lipase levels and have bad attacks. They

shouldn't just be relying on those tests. Have you looked at

the Hopkin's gi website? If not, take a look and then

print them out and shove them in the GI's face about the

normal A & L levels. Here's the website if you don't

already have it. http://hopkins-gi.org/

Do a search on chronic pancreatitis.

It makes me want to growl whenever doctors use that as the

end all test for pancreatitis, especially when it's a child

who has this. If Jackie is having bad pain, things are not

" normal " . Grrr. I know, you feel the same way. Maybe you

should talk to Dr. Cotton and make sure he tells the new

pedi GI this so that Jackie gets the care she needs. I had

to have my normal GI call the one who treated me for my last

case because she didn't want to believe this either. You've

probably already been down this road, but I'm just trying to

think of ideas to help you and Jackie so that she's not

hurting so much.

Again, give Jackie another Get well hug.And a hug for you

too.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest and California Representative

Pancreatitis Association, International

[Guest guest]

,

the problem with those " normals " is that you can have normal

Amylase and Lipase levels and have bad attacks. They

shouldn't just be relying on those tests. Have you looked at

the Hopkin's gi website? If not, take a look and then

print them out and shove them in the GI's face about the

normal A & L levels. Here's the website if you don't

already have it. http://hopkins-gi.org/

Do a search on chronic pancreatitis.

It makes me want to growl whenever doctors use that as the

end all test for pancreatitis, especially when it's a child

who has this. If Jackie is having bad pain, things are not

" normal " . Grrr. I know, you feel the same way. Maybe you

should talk to Dr. Cotton and make sure he tells the new

pedi GI this so that Jackie gets the care she needs. I had

to have my normal GI call the one who treated me for my last

case because she didn't want to believe this either. You've

probably already been down this road, but I'm just trying to

think of ideas to help you and Jackie so that she's not

hurting so much.

Again, give Jackie another Get well hug.And a hug for you

too.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest and California Representative

Pancreatitis Association, International