Crohn's Disease Forum » Parents of Kids with IBD » Ped or Adult GI at Motts/U of Mich


02-04-2018, 01:09 AM   #1
Mehita
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Ped or Adult GI at Motts/U of Mich

Well, here we are. DS just got accepted to his #1, U of Mich, and while he's taking a week to think about it, I think it's a go. I've been looking at the gastro dept web pages for Motts and U of M and could really use some input.

First, do we stick with a ped GI? Or transition to an adult GI? We are keeping his primary GI here, but need back up in MI and someone to oversee his Remicade treatment. What have others done?

Second, can anyone recommend a specific GI in Ann Arbor? I might post in the general forum later, but wanted to see if you all had any input first.

If he does choose Michigan, we are likely going to make a trip in March and see if we can check out the hospital/infusion center situation. Should I make an appt with a GI while we're there?? It's a 10 hour drive, so it's not like we can pop over any time we want.

On a slightly different note, he had his infusion on Friday and they've decided to stop doing pre-meds. They wanted to do a rapid infusion as well, but we said no... maybe next time. Let's only rock the boat a little each time, please!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
02-04-2018, 08:25 AM   #2
my little penguin
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Congrats
Two things
Given he will be 18
The ped GI may NOT take him on as a new patient
I would call and ask
Typically ped GI will continue to see existing patients through college
But new patients once they are 18 is a different kettle of fish

Definitely call - Motts and ask
Tagging Farmwife
Also ask his current ped GI they would know The Who etc....
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DS - -Crohn's -Stelara -mtx
02-04-2018, 12:25 PM   #3
pdx
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Congratulations to your son! I'm a few years behind you, so I don't have any advice, but best of luck with everything--hope you can find a good team in MI.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
02-04-2018, 12:48 PM   #4
kimmidwife
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Congrats! That is amazing news!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-04-2018, 03:01 PM   #5
crohnsinct
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Congratulations!

Well, O went to school across the country and in an area where there are no GI's so to speak. So her bed GI handles everything remotely. Even with this recent flare we are trying to get under control. If there is ever an emergency she will just go to the local E.R. but chances are there will be plenty of warning signs before it gets to that point. I am actually in the airport flying home from a visit with her because everyone wanted a check in.

Our insurance made us move to home infusions and it has been great, especially since she was moved to every 4 weeks. It is unbelievably convenient. They come to her dorm room. So VERY little disruption to her day etc.. T is doing rapid infusions at her hospital and her doc says that research shows rapid has less chance of allergic reaction...go figure. Home infusions are still done s-l-o-w.

U of M has some amazing gurus in the adult GI world. I follow them on social media. Peter Higgins is the IBDDOC. VERY active in CCFA, advocacy, research etc. He is amazing and his team is pretty fantastic also. Since he is at U of M, the hospital would be easy to get to so win/win in my book. But if you really want a pet GI near school and Mott's says no, perhaps your current GI could call in a favor. That is what happened with O when we moved to CA. It was just a hassle trying to find a ped GI for T and an adult one for O, especially since she was flaring and leaving for school two days after we got to CA! So med GI took both girls as a favor to old GI.

Good luck! Let us know what he decides!
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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
02-04-2018, 04:26 PM   #6
Maya142
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You should check - I know that at our children's hospital, they will not take new patients that are 18. If you are an established patient, they will see you through college (up to 23-24) but not not with new patients.

But I would definitely ask your current GI - he may know someone there and could get them to take your son on as a patient, especially since it is mostly going to be just overseeing infusions (hopefully no flares!!).

What pre-meds did he? We were told Tylenol and Benadryl really don't do much in terms of preventing a reaction, so stopping them is no big deal. Solumedrol is different, but you really don't want to be on steroids long-term (my daughter is a living example of all the nasty side effects that come with long-term steroids), so stopping it is a good idea.

In terms of what we did, my daughter is only 1 hour away from home, 2 hours from her GI. She is not on infusions. So we just stuck with her ped. GI. It is a bit of a pain to come home for an appt. and it does involve missing school. But from a GI perspective (she has LOTS of other specialists) it's only once everything 3-4 months if things are good.

Congrats to him!! It's a great school!
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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
02-04-2018, 05:03 PM   #7
Mehita
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Thanks, everyone. I hadn't really thought about the 18 thing and how a ped clinic might not take him. Going the adult route seems to make more sense, especially if he'll be there 4+ years. I will look into Dr. Higgins, crohnsinct - thanks! I see there is also a Dr. Rice there who has interests in both IBD and Celiac.

I know Jacqui's Jack also does dorm infusions. Our GI here told us DS was too much of a risk for home infusions, tho I'm not sure why anymore. It's been four years now and no reactions. Think that would affect the option of dorm infusions? Probably up to the new GI to decide?

The pre-meds were Tylenol and Benadryl, but also 20mg IV of Solumedrol. All were stopped, which was fine and knocked an hour off our visit! Next time with a rapid infusion will seem amazingly fast.

While I don't want him to rush his decision, I do wish he'd decide soon just so we can get some of these balls rolling.
02-06-2018, 10:57 PM   #8
Tesscorm
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Congratulations! They're all growing up, aren't they?!? I remember when I first found the forum, all of us 'oldies' had young kiddos... now they're all becoming (or are already) young adults! (Except MLP's DS... he's staying young! )

I don't really have any thoughts that haven't already been voiced... other than, perhaps, find a GI that is conveniently located to the school. If there's any reason for DS to visit GI, likely he'll be going on his own (given it's a 10 hour drive for you) so, from my experience with S, the more inconvenient for him, the more likely he was to put off going for an apptmt (until the inconvenience of whatever symptoms he had were more inconvenient than bussing or cabbing to dr).

So glad your DS got into his #1 choice!!!
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Tess, mom to S
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
02-07-2018, 01:39 PM   #9
Jmrogers4
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Yeah, I would think after 4 years of no reactions home/dorm infusions would not be an issue that being said epi pen and some kind of steroid shot is on hand at infusion (kept in a drawer in kitchenette after finding out can't keep in fridge which of course was where he put it - thanks crohnsforum for the facts about that).

As you know we were just in a similar predicament of deciding whether or not to change since Jack's GI took a leave of absence. We are choosing to stay with Ped GI office since he is stable and they are really monitoring Remicade infusions and he will have a checkup once a year when he is home in the summer. Once he figures out what he's doing after college (med school, work and where) we'll make the decision of adult GI.

I don't know how I'm going to feel when farmwife's princess goes off to college
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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
02-07-2018, 02:25 PM   #10
Farmwife
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Congratulations! Well kind of...... I mean it's not Michigan state but hey.....

I'm not sure what the age cut of is there.
My sis saw some young docs and she assumed they were accepting junior high kids now.
I'm sorry.... my bad.....couldn't help it.....I'm a State fan.....it just slips out.

Grace's doctors are already demanding she to go state!
That way she can still go see them.
But since I'm homeschooling, she might never leave mom.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
02-07-2018, 03:27 PM   #11
Maya142
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Princesses don't need to go to college anyway !!
02-08-2018, 11:45 PM   #12
crohnsinct
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In case you are in the area:

https://twitter.com/CrzyCreoleMommy/...36883368706049
02-21-2018, 12:53 AM   #13
Mehita
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Still no decision. Apparently we're waiting until May 1st. *said w thick sarcasm* For the younger parents, that's the last possible decision day for most US colleges.

GI today did say that he can help us find another GI who will co-sign infusions and orders and be available for flares, especially at the larger universities with their university medical systems that DS is considering. General GI care will stay here at home with his ped GI. He agreed that most ped clinics (incl Mott) won't accept him since he'll be 18, but he could pull favors if we really wanted a ped.

I keep thinking how much easier it would be if he stayed in state. Infusion clinic across the river from the dorms. In state tuition. Current ped GI on campus. In state tuition. No insurance hassles. In state tuition. Familiar hospital. Did I mention in state tuition?
02-21-2018, 09:47 AM   #14
Jmrogers4
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in-state tuition!!! I'm currently subtly mentioning in-state school everytime my younger son starts talking about these $50,000 out of state schools. Went to visit Jack over the weekend and he stayed in the dorm with him and said he could probably go there if he had to.....
Glad the GI is on the ball and ready to get things set up wherever he ends up
02-21-2018, 10:29 AM   #15
crohnsinct
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Right there with ya sista's! O picked a state school...just not my state! Barely even in my country! Add in the plane fare back and forth and the storage unit for the summer....Cha Ching!
02-26-2018, 11:11 PM   #16
kimmidwife
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I told my kids they have no choice but to go to in state schools unless they want to pay the expenses of going out of state.
Wishing him the best with whatever he decides!
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