When do you change to an adult GI

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My daughter is being treated at a children's hospital.
In a few months she'll turn 16 which means she can see an adult GI. I'd prefer her to keep going to the children's hospital but she wants to see a GI that's close to home. She hates the travelling.
I'm a bit worried about swapping to an adult GI as the children's hospital only deal with kids. I really don't know what to do. Any advice would be appreciated.
 
Tough call --but she's the patient. My son's GI doc will follow him all the way through college...and I imagine most pediatric GI docs would do the same. If there is an excellent adult GI doc for your daughter closer to home, maybe give it a try. I'd talk with her current doctor about switching and make sure s/he would be okay with your daughter returning for care if this closer-to-home doctor doesn't work out. I think if her current doctor knows up front what you are doing, it wouldn't be a problem to re-initiate care. Good luck! I am sure thinking of changing doctors for her is anxiety provoking for you!!
 
Cincinnati Children's told us that they would treat my son until he is finished with College. The program here is so much better for kids than for adults we will take full advantage of that as long as we can.

I also believe that because his disease appeared at such a young age that it has complications and nuances that someone with adult onset would not have.

I would also want to stick with my current GI if my child was having any issues that we were trying to work through. I would want to make sure that everything had been stable for at least a year before I would want to switch GI's.

Good luck, I am sure you will figure out the best path for your daughter. (((Hugs))))
 
Horrible when you have to make decisions like this. :(

We were the opposite upsetmom. When Sarah was diagnosed at 14 we would have had to travel to Sydney (600kms one way) to see a paediatric gastroenterologist so decided to go with an adult one straight up that was 225kms (one way) away. Having said that, if the adult GI didn't come highly recommended and hadn't proved to be just that I would have gone to Sydney.

Matt isn't too fussed travelling the 225kms to see his GI either as there is now one 100kms away so I said, the choice is yours Matt, after all he is just a snig short of 20, but don't ever underestimate the value that a good GI will be to both your short and long term health and well being. With that he decided to go to Port Macquarie.

To be honest, if I was in your situation, and given your daughter's age, and I was totally happy with the current situation I wouldn't change until the time came that I had no choice. A bit like...if it ain't broke don't fix it.

Good luck mum. :ghug:

Dusty. xxx
 
Couple of questions for first.

Are you using the public or private system?

Sarah was 16 years and half when dx so we have always had a adult GI. Private system can be very expensive.

We do not have access to the children hospital. The GI had problem finding someone to do her MRI due her age.

When we were looking at doing an iron influsion the local hospital wouldn't take her due to her age, as she was under 18 years not either would the children's.
 
PS. Paediatricians that we saw in the early days retain their patients until 25 if the patient so chooses. That would also fit with the fact that hospitals like RPA, that are not a dedicated children's hospital, have a youth and adolescent unit that caters for patients 12-24 years.

Dusty. :)
 
Okay...

2 years is a lifetime to a 16 year old but those of us that are a tad older :lol: know it is merely a drop in the ocean.

I would hold off on the transfer and spend the next two years laying the ground work for the transfer. By that I mean starting to suss out the new guy now, things like his reputation, his bedside manner, availability and where is interests lie, as in does he have a particular interest in IBD. If I was happy with all the information that I had gathered I would likely touch base with him 12 months out from the transfer and from that point on start having all test results cc'd to him.

Dusty. :)
 
Stephen was diagnosed just before turning 17, at a children's hospital and he stayed with the ped GI until 18. The hospital was very strict with the date so we had no choice but to move as soon as he turned 18... ie had a follow up that had to be moved up by a week because it was scheduled for one week AFTER he turned 18!

I've only had relatively short times with both the ped and adult GIs (approx. 1 year with each), but I haven't found a huge difference in the quality of care and Stephen's felt comfortable with both GIs. If anything, I think the adult GI has been more aggressive in fighting inflammation. I had the sense that the ped GI was willing to allow things to 'drift' a bit since things were stable as he knew transfer was imminent (don't mean 'neglect', just, perhaps, hesitant to begin a more aggressive treatment he wouldn't be following up for the long term).

I've also found that the IBD clinic at the children's hospital was so BIG, that you were almost just a number in the line-up of the clinic's patients! While the adult GI is also based in a large hospital/large IBD clinic, Stephen seems to be more a patient of the specific GI, not of the clinic. (... if that makes sense?? :)) If anything, I actually would have expected a bit more of the opposite...

The adult GI was recommended by our ped GI.

Something else to consider, as I said, our children's hospital was very strict re 'age'. There was a girl at the ped clinic who was turning 18 within days and required surgery. The ped GI had to make a special request to perform the surgery and keep her for a few days following but, within a week, she was transferred to the adult GI/hospital. So, if your children's hospital is strict with age/dates (but, from what's above, seems your med system is more flexible), you may want to make the transfer to a new GI while she is feeling good so you don't find yourself in a situation where she is ill, perhaps requiring a new treatment and you are then in the middle of a transfer.

:)
 
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I've seen both ped and adult GI. I did hate the transfert from ped to adult GI to the point that, being in remission, I stopped seeing one for about 5-6 years. The world is not the same between both, adult GI are direct, they don't "fla-fla" around trying to make you accept the therapeutic procedure whereas in my ped GIs were both very knowledgeable and open about everything. Mostly, they would take the time to listen and explain. First appointment with my adult GI was more of a: "I see you are on no medication, I would advise you to take purinethol, else, don't come here until you aren't ready for it". At 18, it had the effect of, well F U, I'm just not coming back...

That being said, Even now, if I could have been followed by my ped GI all my life I would. They were amazing. My actual GI is also great but I had to change hospital and make papers and stuff to find him.
 
I found the same as PsychoJane regarding directness re meds and consequences with the adult GI. :eek: However, our adult GI has been as patient in answering questions and providing information as was the ped GI.
 
Thanks everyone!! Now my decision is even harder..:lol:

Like l said l'd prefer her to stay at the children's but even my husband keeps nagging me to try the local GI. If anyone should be complaining about the travelling it should be me...I not only travel there for my daughter but for my husband as well.

Anyway today we're going to talk to my husbands friend who sees this GI and see what he has to say about this DR.
 
Oh I'd vote for the pedi Gi. They are much more family oriented and in tune to the whole person I think and used to working with teens. OK i'm a pedi specialist so I might be biased but I have been very disappointed with adult specialists. Of course if the pediGI wasn't good and the adult gi was fabulous it would be a different story.
 
Vote for staying with ped Gi.
You have more of a say in get care with a ped Gi vs adult Gi
Most of the time it would be just her.
 
Thanks everyone!! Now my decision is even harder..:lol:

Like l said l'd prefer her to stay at the children's but even my husband keeps nagging me to try the local GI. If anyone should be complaining about the travelling it should be me...I not only travel there for my daughter but for my husband as well.

Anyway today we're going to talk to my husbands friend who sees this GI and see what he has to say about this DR.

I would be inclined to say to husband and daughter...when did her/your health become about convenience rather than the best possible health outcomes? :eek2: :lol:

Good luck mum and :hang: !!!

Dusty. xxx
 
Decisions made no changing DRs till she's 18..:)...she can complain all she likes. I spoke with my husbands friend who has crohn's and l think its best if we stay where we are. They apparently don't have a nurse who l could contact...and l don't like that idea at all....Are all adult GI without a nurse or is it just this one ?
 
We don't have a nurse but I do have the GI mobile number but I don't think the would be normal.
 
THe gi has a nurse who may or may not call back in a timely fashion. We've been told to leave a message on her voice mail only to later find out that she was out for a few days.
 
IBD nurses are not the norm in Oz outside of the hospital clinic setting. There are nurses in the GI practice that we go to because it is a day surgery but they are not specific to IBD.

We too have the GI's mobile number and email address.

Dusty. :)
 

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