Making Far away Ped GI's work

[my little penguin]

So we are considering moving DS permanently to another GI.
We currently go to a large university pediatric hospital with an IBD clinic but have been less than impressed with the results.

We are having a 2nd opinion at the end of the month but the place is over 5 hours away. There is another option a little closer but still.
Has anyone changed successfully to an IBD specialist who was more than 2 hours away?
IF so how did that work???
I really don't want to be "Stuck" where we are currently:ybatty:

:sign0085:

 

[Clash]

Just popping in on this thread of yours too to mention the Peds GI we chose is 3 hours away. We make the drive for GI appts as well as remicade infusions. We were offered the option after loading doses of transferring the infusions to our local hospital but C wanted no part of that. He really likes the Children's lab attached to GI office so we have continued to make the trek! We really make a day of it, as the office is in a much bigger city and we let him choose a restaurant, mall, activity. Sometimes, the benedryl they give before the infusion makes him really drowsy and we just head back home. It really has been a great choice and fit for us even though it is quite the drive.

 

[Tesscorm]

MLP, I think I would be a bit worried about the accessibility of seeing a GI that far away. Do you work? Each appointment would require a full day away from work. Could tests such as MREs, ultrasounds, etc. be scheduled for the same day or would that involve another 5 hour drive? What is the weather like? In Toronto, we can count on long winters... it wouldn't be hard to imagine that snow, sleet, etc. could make a 5 hour drive into an 8 hour drive, or force us to cancel completely. Would your regular ped be willing to act as the 'back-up' GI and would you be comfortable with that?

On the other hand, how often do you actually visit the GI? Even if it is every 3 months, it's only 'one' day... and, Clash makes a good point... when I was young, I was sick and had to travel to our hospital 'in the city' for regular follow-ups and it was over an hour's drive. Even though it wasn't a 5 hour drive, my parents made it into a 'day' event - exactly as Clash said - restaurant, activity, ice creams, etc. I have fond memories of those days (the fact that they revolved around hospital appointments seemed to be insignificant to me )

But, I'm pretty sure that if I felt that Stephen was not able to get the necessary, knowledgeable, appropriate care nearby, then regardless of the distance, it would be worth the drive to get him the care he needed.

So, not sure what I would do??? :redface: Just some thoughts...

 

[DustyKat]

Where we are we had no choice but to have a GI either 3 hours away one way or seven hours away one way. I don't know where you are located mlp but I guess in Oz because of the distances and low population the system is set up that the GP does all the leg work...bloods, ordering of tests, routine follow up appointments, scripts and so on. We can get all the testing done locally and the results are always CC'd to the consultant.

When it comes to visiting the consultant either the GP liaises with him when it is something that just needs a little tweaking or I ring him directly if their is an issue and we discuss it over the phone. If the kids need to be seen then we make the trip and we always stay overnight, except when we sometimes fly to city. Fortunately I have ample leave and going at short notice is not an issue.

The system we have works well for us and the consultants we have seen on the coast and in the city have always been mindful of the distances involved and accommodated us accordingly in regards to appointment times.

Dusty.

 

[michaelearnest]

Wow Dusty and penguin - that all sounds stressful. I guess I should feel lucky living in the Cleveland, Ohio area so close to the Cleveland Clinic and all the GI's and Crohns specialists here within 30 miles of each other. Keep us updated and I wish you all the luck in the world and send hugs.

 

[kimmidwife]

I just saw this thread. MLP what did you end up doing? I guess this makes me feel like I am not alone in having to find a GI who is farther away. It is hard when we are used to having so many university hospitals within a short drive.

 

[Farmwife]

MLP, I just saw this thread also.
Our trip is 3 hours away also. We have no choice. Our GI said if were in our local hospital he will call them and let them know what test to do. Our local hospital is the biggest in Northern Michigan so all testing can be done here. Just to bad they do the wrong testing!

 

[my little penguin]

GI visit #1 done.
So glad we are going to GI#2 now.
GI basically said DS does not make "sense" to him.
He also said he consulted with the other top GI's who specialize in IBD at local place and they have no ideas either.
Which confirms our fear that switching at local place to another GI there would not really get us anywhere.
Here is the scary part.
Gi said
He has seen patients with:
1.) IBD + joint pain
2.) IBD+ vasculitis
3.) IBD + ulcers

He has not however seen all of those things in ONE patient unless they had SEVERE ( Bloody Diarrhea, fistulas, inflammation ,etc) going on.:shifty:
He also said most kids with IBD who start at age 8 are severe. I was not ready for that one.
DS does not have severe GI symptoms as far as he is concerned given the current test results but we will not know for sure since the pill cam was denied by insurance.:yfaint:
He does not take constipation in to the equation:ymad:
So off to pack to get more answers hopefully good ones on thursday and Friday.
I t is never good for your child to be the only one with at any place.:runaway:

 

[Tesscorm]

I'm so sorry that the appointment wasn't a more positive one I can imagine how frustrated you are feeling :ghug: I really do hope you can get a more definitive action plan at your next appointment. Is it a larger facility/hospital?

I think it's terrible that your insurance declined the pill cam!!! Our system is a little different and, while our insurance can also decline meds (ie Stephen's formula not covered), I don't think our medical system ever declines doctor recommended tests - I just don't understand how an insurance company is allowed to override a doctor's recommendation! :ymad:

:ghug:

 

[Clash]

MLP I hope the new GI can give you some answers. Praying for answers and safe travel for your family!

 

[my little penguin]

Tess - the sad thing is where we go is a large tertiary ( does liver transplants etc)
# 2 place is also large but far.
#3 place large and willing to take us ( not as far)
Still 3 hours away though .
Current place is only 1-2 hours depending on traffic.
So we shall see what they say and I will update more later on Friday.

Sorry for the typos the phone is auto correcting

 

[crohnsinct]

Oh MLP I am so sorry. At least you can feel comfortable moving along to another GI. Are any of the newer ones part of Improve Care Now by any chance?

 

[DustyKat]

Oh my mlp...:hug:

I am glad you are moving on from this doc. I hate all the crap, no pun intended!, that goes along with constipation and the dismissive attitude that some docs take toward it. Grrrrrr. I wish the insurance company was more forthcoming with the pill cam , , heartless ^@#$&*!

Thinking of you all and sending loads of luck and healing thoughts your way!

Dusty. xxx

 

[kimmidwife]

MLP,
About the pill camera your doctor can call and ask for a medical necessity review by the medical board at the insurance if he thinks the test is necessary. we had to do that for something a while back I don't remember exactly what. cool I just used auto speak it for the first time. On another note we just got first appointment with the new G.I. who is in Miami which is about 1 hour away depending on traffic.

 

[my little penguin]

Woohoo on the new Gi appt .
Gi appealed it twice on the pill cam loads of documents.
They sent back loads of their own documents.

Both place #2 and #3 are ICN .
Where we currently go is not.

 

[kimmidwife]

MLP,
Does he have a case manager with the insurance company? If not call them and request one. Once you have one they are very good at getting the insurance to agree to things they otherwise would not agree to.

 

[my little penguin]

Even with private insurance ?

 

[izzi'smom]

funny you should mention a case manager...we were just assigned one and I remember thinking "what the heck is this about". So noe I know lol! She can do some of the legwork/fight for us...yippee! And yes, we have private insurance.

 

[crohnsinct]

Hey MLP it is the end of the month...when is your appointment?

add: maybe new GI can present pill cam differently so they approve it!

 

[my little penguin]

Appt in am with GI
Had pain clinic today
Very awesome experience .

 

[Tesscorm]

Good luck tomorrow! :ghug:

 

[kimmidwife]

Isnt pain clinic amazing? We also had an excellent experience. Yes as Angie said you can have a case manager with private insurance. Angie, I had the same reaction initially but then it was good.