What to ask GI doc - at first appt for trt plan

[firemama]

this is my first message to the list...

So the GI doc emailed me this weekend to set up an appt for Tues to discuss treatment plan for my DD (7 yrs old). What should I be listening for and what should I be sure to ask?

some background:
- diagnosed with encoperisis at 3yrs. trts have been mineral oil, miralax, lactulose, and sitting on toilet after meals.

now at 7yrs...
- no wt gain in 2 yrs (she is stuck between 41 and 43 lbs)
- low calorie intake (feels full or vomits)
- intermittent fevers with no cold symptoms (takes a week or so to go away)
- extreme fatigue
- lots of stomach pain, esp during BM
- she has missed 3.5 weeks of school so far this fall

in Feb 2014 had gastric emptying study, barium enema, upper endoscopy, and colonoscopy. the endoscopy and colonoscopy showed some small areas of inflammation. bloodwork at that time was ok.

-2 rounds of bloodwork this fall showed very high inflammatory markers
-stool calprotectin was >1000 (cannot remember value)
- had MRE with oral, rectal, and IV contrast a week ago that showed mild to moderate inflammation throughout the large intestine. no issues identified with other organs.

So I am expecting a diagnosis of either UC or Crohn's tomorrow. what do I need to be sure to ask? What might I expect to hear?

thanks!

 

[DJW]

Hi and welcome.

We have a great group of parents here. They'll be along. Sending both of you my support.

 

[FrozenGirl]

Welcome! I'm sure some of our great members will be along with a more comprehensive answer but here are a couple.
-Medically what is going on, where is inflammation, depth, pattern etc.
-Treatment options. Not just immediate but potential future treatments, options
- Treatment expectations, what should happen/reduce symptoms when
-When to call, emergency only or any new symptoms. Who do I talk to? It is receptionist passes message to gin, gi directly, ibd nurse etc.
-Ideas on explaining to your child. She obviously knows something is wrong but depending on maturity, understanding etch, how many details should she get. Who should give them, docs or you.

Good luck! I am sad there is so many so young but happy symptoms are being taken seriously.

Another idea, if she is missing school and doesn't already have one a 504 or other ed plan depending on where you are. If you have one adding updated info is always good

 

[crohnsinct]

Ditto to much of what frozen said. I would add when discussing treatment there is an easy acronym to remember

B - what are the Benefits of the proposed treatment plan
R - what are the Risks
A - what are the Alternatives
N - what if we do Nothing
D - Decide

Especially important is the alternatives. Docs sometimes get a feel for your personality and tolerance and present what they "think" you "want" and you may miss osme other alternatives that you may have preferred.

Also, ask what symptoms specifically warrant a call to the office on an urgent or non urgent basis. Of course they can't cover all possible things that might crop up but they will give you the usual.

I got an email address from our office. It is our doc's nurse. This way I email and let them figure if it needs to be addressed right away or if it can wait. I also find that there are no chances for things to be misinterpretted and I have a handy log of the goings on.

Before you go in have a look at this handy presentation about risks it might help calm your fears or at least give you a head start and let the doc address your concerns.

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Write down all of your questions and while you are in there go over them one by one. Those appointments can take twists and turns and I do not look at my list I can find myself leaving with my main question left unanswered because I simply got distracted and forgot to ask it! If I have a lot of questions or they are very detailed, I will email the nurse ahead of time so the doc isn't ambushed. Whether or not he reads the list I do not know but he seems to be well aware of what I am looking for.

Good luck...any questions ask away. We have all been there and the learning curve can be steep!

 

[firemama]

Thanks for the suggestions. DD is hoping the MRE was the last test to find the right medicine. We told her she has a bad rash on the inside of her large intestine. She seems to get that. I will definitely be writing out my questions tonight.

 

[CrohnsKidMom]

Just wanted to send my support! You have been given great advice and are already off to a good start. I hope whatever treatment is given, it is successful at getting your little one feeling better again.

 

[Farmwife]

Sorry late to the thread. I go with the B.R.A.N. D. idea also.
It's a great memory tool.

Also don't be afraid to ask them to explain a second/third/fourth time until you understand the reasons behind the GI's thinking. Far to often Parents let things drop in the conversation because we might be to embarrassed to admit we didn't understand it.

I hope the meeting goes well and you have a solid plan on moving forward.

 

[crohnsinct]

Yeah and docs forget we are new to all this and they speak and move fast.

In the span of two minutes my daughter's doc said, "I would like to add methotrexate to help the Remicade, we will start with injections for a few weeks, then move to pills. have you ever given and injection? No. O.K. let me go get the nurse".

I literally had to stop him as he was running out the door to get the nurse. I hadn't even said O.K. to the darn drug. I told him to sit down and explain everything to me fully.

Haha...we walked out with an EEN plan instead!

 

[araceli]

Get between the door and the Doctor. LOL Have your questions in writing. Ask for copies of all the tests. Sending Hugs and support.