Cassie's GI Visit

[Guest guest]

Hi all

I took Cassie down to Portalnd on Monday to see her GI. Overall it was a

pretty good visit. I think we accomplished at least 75% of what we set out

to do.

1st thing I did was explain to him how Cassie's Peditrician was making

us feel like we were wasting his time everytime I bring her in for pancreas

related issues. And that because of this she wanted to change dr's. I told him

my

feelings were I was doing what was right 4 her. Afterall how was I to know

wheather this was going to be the " great attack " , you know the one that lands

you in ICU on life support. He told me he had no idea that we were

experiencing these issues let alone that she had any problems since he had done

her

upper endoscopy in September. They were not calling him. So issue 1 now stands

like this. Anytime she has issues related to pancreatitis I am to contact his

office 1st. he will then call her Dr's here with orders then call me back

and let me know what he ordered before I take her in. Any ER visits they are to

call him ASAP so again he can give instructions.

Issue 2 was how they were handling her pain. Boy was he pissed off!

New orders, any and all pain medication for her is to be ordered from him at

this point. All I need to do is call or e-mail him and he will call in her pain

prescription to my local pharmacy. no questions asked, He says at this point

he doesn't feel that she needs pain management since i would have only given

here prescription pain meds on 3 occassions since January of this year.

Issue 3 myralx - wanted to know what idiot (his words) put her on this

and why. So I explained that she had xray done and it showed stool in bowels.

So they presumed she had constipation issue. Without myralax she goes 4 to 6

times a day and always had. When She took it everyday like they wanted she

spent most of the day on the pot so I had her taking it every 3 days. He told

us to stop, what was he going to give her when she started having a problem.

Next was the previcid, same thing, why is she taking this, she doesn't

have GERD. put her back on the zantac. Boy wasn't she happy with all this!

He also added to her diagnosis because of the SPINK1 she's now

Hereditary ideopathic chronic recurrent pancreatits. And when I am

communicating with

other health care providers to make sure I include the herediary part, says it

should make things easier to come by for her.

I also spoke to him about TP/ICT for her. He says at this point in time

he will not reccomend her for this procedure. He feels that with her other

issues, ADHD, non-verbal learning disorder that she can't handle the emotional

turmoil the procedure and recovery would require at this time. Says she needs

counsuling before he'd even consider it but promised me he would not let her

get to the point some of you are at now with this disease.

I finally got someone to respond to her low blood sugar issue I beleive

she is having as well as the difference in the size of her kidney's . She had

lots of test done and I shoeld her back this week. If nothing else I know

she feels better about her visit.

Patty Hurst

Bangor, ME

Maine State Rep

PAI