Crohn's Disease Forum » Parents of Kids with IBD » Should he stay or should he go??


01-11-2018, 10:10 AM   #1
Jmrogers4
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Should he stay or should he go??

All right my mammas, Jack has not had labs done since August 7th. Our goal at that point with him going to school was maybe every 3rd infusion. So not hearing anything I sent an email to his GI asking and he usually responds within 2 days if it's not urgent (a week goes by and I don't hear anything) so I figure I'll just call the office. I leave a message for one of the nurses and no call back (getting a little frustrated).
So I call Jack and say please call GI office and inquire about labs maybe they need your permission to talk to me since your 18. Sure enough they call him right back and schedule labs for when he is home over break right in the middle of an infusion cycle. Inform Jack that maybe that wasn't the best time since he received his infusion 3 days before coming home for break and most of the time they don't really tell us anything but I'm sure we would not get an accurate reading and they would of course be good since it was so close to after infusion.
Tell him he needs to call them back and set up to get his labs done by school right before infusion (of course he doesn't- he has time right?).
So I get an answer back from my email sent to his GI in November on Monday - Yes we need to get labs done for Jack lets schedule at infusion center at next infusion. I send back an email reminding him Jack is getting infusions in his dorm and the nurse isn't really set up to pull labs. Give him the name of the hospital out there and the university health center lab.
Receive an email back within the hour, he will set up labs at the university health center and he can go right before next infusion (January 23rd). Yeah!
I get a call from Jack an hour later that GI's office called him and we can't do labs at university health center because they don't accept insurance so unless we want to pay out of pocket they set them up at the hospital (not a big deal it's really close to campus). But then he informs me he is now under another doctor in the practice because his doctor is on a leave of absence and they don't know if/when he will be coming back! We love his GI, he has been with us the entire time, the last 8 years since diagnosis! and he agreed to treat Jack through college.
So now to my question in the title (thanks for sticking with me through that back story). Do we stay at pediatric office with another doctor? Move to an adult GI (could start seeing the same GI as his dad)? or go to a doctor in his college town? knowing he would likely be moving in 4 years. He is planning on renting an apartment at the end of the school year with some buddies so realistically (financially) he will be there for most of the year with some brief visits home which is the only reason I thought about local GI there.
What do y'all think? It's kind of thrown me for a loop as I thought we would not have to worry about switching GI's for a few years. He does not have an actual check up with GI until August.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-11-2018, 10:44 AM   #2
crohnsinct
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Don't you just love the logistical nightmare that is college?!

We have the same issues with O except she doesn't come home on breaks and doest stay in college town!

I am torn. On one hand the doc in the current GI practice at least has all the notes and some relationship with his old GI so they technically "know" him. However, they are becoming adults and need to switch sooner or later and if he is switching now mine as well switch to an adult GI. This would eliminate two switches, ne now to another sed go and then another after college. So I say adult GI.

Now, where? If he is honestly spending most of his time at college and you think he may settle there, I would be inclined to get a GI there. Are there any major medical centers there? Could you husband's GI look at a list and tell you if he knows any of them, read their research etc? Same rationale here, why switch to dad's GI only to have to switch after graduation and setting in college area.

Last point, with O flaring and so far away it is a real PITA! Her new GI is being sooooo nice about the distance and his inability to see her and rely on phone reports etc but it is really limiting. He has actually asked her to consider transferring to a school closer to home. She won't have it. She told him she was always told Crohn's won't stop her from doing what she wants and it already stopped one thing (third world missions) so she wasn't letting it dictate this. He was good. He said, "I am not telling you not to go to college, just pick a different one". She said she will take it under advisement.

Good Luck! We looked around where O goes to school and the choices were VERY limited. Doesn't help she picked a college in a very rural part of the country and not exactly a medical Mecca.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-11-2018, 11:37 AM   #3
Jmrogers4
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So College town is small (50,000) and I don't see him settling there, plan is med school after so who knows where or even if. I think most with any major medical go to Salt Lake (2 1/2 hours away or Boise 3 1/2 hours away).
There is one GI office with 3 GI's and 1 PA. 1 hospital.
It's a 3 1/2 hour drive from home so luckily not across the country (I don't know how you do it CIC). My hope is that he stays in remission all through school (don't we all) and only needs monitoring and orders for remicade/lab which then would be fine with staying at current ped GI office but realistically...
01-11-2018, 11:51 AM   #4
Maya142
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We chose to keep my daughter with her pediatric GI at home because she is pretty close to home - her school is 1 hour away from home and 2 from her GI.

Also, her GI will see her through college, and it didn't make sense to me to move just for 4 years, especially since we don't think she will stay there after college.

However, if your son is not really going to be home over breaks then it would make sense to move to a local GI, IF you can find a really good one.

Otherwise I'd keep him with the ped. GI (even though it may be a new one) or his dad's GI, even though it's inconvenient. Because if something happens and he flares (and we really hope he doesn't!) then you want him with a really good GI to figure out the next steps.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-11-2018, 12:08 PM   #5
my little penguin
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My vote stay with a pediatric GI no matter where you go as long as possible
There is a reason most pediatric GI do not transfer care at 18
The adult -kids are not ready to handle the complex disease the same as a true adult
Tagging Maya142 on this
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01-11-2018, 12:14 PM   #6
Maya142
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We have definitely found that for rheumatology, adult rheumatologists treat very differently than pediatric ones. It is very frustrating. Things move more slowly, they're more cautious and less likely to treat aggressively.

In our case, our adult rheumatologist gets really worried about over-treatment whereas pediatric rheumatologists are MUCH more concerned about under-treatment, because you want to preserve a kid's joints as long as possible and prevent damage.

You would expect adult rheumatologists to have the same philosophy and on paper they do, but they're just not as willing to up meds or try something that isn't FDA approved.

I think it's because pediatric doctors HAVE to use meds that aren't FDA approved for that condition yet because it takes forever for things to be approved for kids, so they are more comfortable with treating like that.

That said, it is possible to find good adult doctors, you just have to look hard.

I wish we had not switched my younger daughter who is very complex from pediatric to adult rheumatology but her ped. rheumy was retiring due to illness.

We are still trying to figure out if her adult rheumatologist is the right fit and M has been with her 8-9 months.

That said, if you have a kid in remission and who is not complex (1 disease vs. 5!) then it's a lot easier. My older daughter only has AS and once we found the right rheumatologist, she has done really well.
01-11-2018, 12:33 PM   #7
crohnsinct
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Oh wait a second. He is going to be moving around quite a bit. First med school and who knows where that might be. Then internship. Then residency. I might be inclined to just to keep the ped GI at home who is willing to treat from far away and for the next few years. In good times they only see the GI every 6 months, so it is doable. If he gets in a serious flare he would probably come home anyway. It is not so far that the distance or travel would be too difficult.

When he picks a med school etc I would deal with it then.
01-11-2018, 12:57 PM   #8
Jmrogers4
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You all are the best!!! I was leaning towards staying with doctor at home just wondering about Ped or Adult.
So stay with Ped we do know the doctor when Jack was dx'd it was only his GI and this other GI that has now been assigned to him in the office. He is familiar with Jack's history and would regularly consult with the other GI to problem solve.
I really like hubby's GI but I'm kind of afraid of another doctor screwing up all our work, if that makes sense. It took us so long to get where we are now and I'm afraid they would change meds or something because even when my husband started seeing him about a year ago they questioned his crohn's diagnosis because last scopes were clean (umm yeah that is because medicine was working) After telling him about Jack, talking about past fistulas and abscesses, he said yeah you probably do have it. (Only for the last 25 years!)
01-11-2018, 12:59 PM   #9
Maya142
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Yes, would DEFINITELY stay with pediatrics then. The last thing you want is for an adult GI to scope Jack and say "Oh everything looks good, let's take him off Remicade!"
01-11-2018, 01:04 PM   #10
Jmrogers4
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Yeah I don't understand that. I thought the goal was full mucosal healing so if you have that why mess with it???
01-11-2018, 01:06 PM   #11
Maya142
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That is my biggest fear with transitioning to adult care - they question the disease or the severity of the disease.

It took 3 adult rheumatologists before we found a good one for my older daughter.
01-11-2018, 01:51 PM   #12
crohnsinct
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Decision by committee! I LOVE it!
01-17-2018, 12:53 PM   #13
Tesscorm
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Sorry Iím late to this... hv been away for a while with family issues. But, re your question...

Iíve had a great experience w Sís adult ped. As S hadnít been dxed for long before we transferred, it was at a time when Iíd go to his apptmts with tons of questions, studies, notebooks, my excel spreadsheet of labs, etc so that may hv set the precedent of who was managing the care (btwn S and me). PITA mom extradonaire! Lol. From the beginning, S signed off on allowing me access to everything. Itís now been ~5 years and nothing has changed. I email office with any concerns, updates, etc. and I still attend GI apptmts.

His GI always gives me the opportunity to ask questions or give my opinion (nowadays I donít say much tho). Heís also advised and helped us with various issues, even when unrelated to crohns (ie when I was concerned abt his shoulder surgery while on remi, he referred us to a specialist in his hospital).

So while I did initially notice a difference in how S was treated as the patient (ie opposed to peds who involve parents more), it quickly changed and both GI and office staff donít hesitate to keep me involved in any way (results, booking apptmts, answering emails, etc). His GI does direct all conversation/questions to S primarily (as he shud since S is the patient and I want S to take control too).

So, whether ped or adult, finding one that works with your needs/expectation is more important but it is also a matter of luck and your assumption of how things will be handled (of course, hospital policy, etc will be a factor too).

S was a couple hours drive when at school (heís done now! Yahoo!!) but we wud just do the drive when necessary... was definitely a hassle at times but.. luckily he stayed in remission so it was manageable.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-19-2018, 07:46 AM   #14
CarolinAlaska
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Also late here, but also would say to stay where you are since they will just take over, stay on same page, and is already established. Besides, who has the time to move when he's so far away?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
01-19-2018, 03:35 PM   #15
sgholmes2002
 
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My son is only 16 and diagnosed a little less than a year. Our ped GI doc told us that he will see my son through college. He also said that he would help us locate an adult GI doc in the town my son goes to college. Doc said my son would see BOTH docs. He said both docs would work together. This sounded great to me, but we are relatively new at this.
01-23-2018, 03:43 PM   #16
Jmrogers4
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That sounds like a great set up sgholmes2002. It is just hard when he's been seeing the same doc since diagnosis so 8+ years luckily we know the other docs in the practice and they all know Jack (He's the kid that talked to everyone and wasn't shy about sharing ).
01-23-2018, 04:47 PM   #17
crohnsinct
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We had the same set up but then my daughter had to go pick a school that is 2 hours away from the nearest major medical center and only 2 adult GI's within half hour of the school. No ped GI's either. Her GI really tried though. She got into a school in Philadelphia and I made her put " close to CHOP" in the pro column but alas she picked a different school.
02-21-2018, 12:34 AM   #18
Mehita
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Met with our GI and discussed this a little today. We're going to stick with the ped GI, but our GI said he'd help us find a GI at college to sign off on infusions and labs. New GI will consult with ped GI on everything and also be available for emergencies. Our ped GI today said sometimes this is easier within university systems, which luckily, all of DS' top college choices have and we're part of already.

Seeing as DS couldn't even remember which mediation he's allergic to today, it really had me questioning how ready he is. Brain fart? Maybe. Some days he's so "adult" and other days, not so much. So, that's my reasoning for sticking with the ped GI as long as we can.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
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