Colleges and Gi location

[my little penguin]

So believe or not Ds who was 7 at dx
Will be starting to chose colleges soon (junior in the fall )

After reading I’m here about the trials of timing Gi visits /scopes with colleges classes
Flares from far away

Did you find a college which had a large ibd center within driving distance (1-2 hours )?
Was that helpful?

hoping kiddo is healthy all four years but
Follow ups with multiple specialists will be required
Kiddie hospitals are doable but only if Ds becomes a patient there prior to age 18
Over 18 and adult it is ....

Lots of things to discuss

the thought is if Ds can find a doc/ college combo close to each other than the regular medical maintenance stuff becomes less of an issue to his normal college life

 

[Pilgrim]

What about mom? I notice CIC flies back and forth to help, can you do that? I would push for driving distance situation near great IBD center.

And.....WHAT????? He isn't that old yet! Time flies around here.

 

[Maya142]

M is 2 hours away from all her specialists and it is a giant pain. But she has a LOT of specialists - 23 the last time we counted, in 5 states. So she's sort of a special case.

In general, if your child sees only 2-3 specialists, I would say 2 hours is not a big deal. But if you have a complex kiddo who requires many procedures and surgeries and scans/scopes to keep her healthy, then I would suggest being as close as possible to a large IBD center AND a good children's or adult hospital (depending on whether you are planning to stay with pediatric specialists) for all other specialists. Definitely driving distance but ideally I would say less than 2 hours each way. Because if it's 2 hours each way and your kiddo is seeing most of his/her specialists every 3-4 months, that means 4 hours in the car and if you add wait times, that means missing a LOT of school, which is exponentially harder in college than in high school.

For a kiddo with arthritis, I would also look at the size of the campus, whether freshmen are allowed to have cars, what kind of accommodations the school provides (for a kiddo with pretty severe Gastroparesis, access to a kitchen as a freshman was very important and a semi-private bathroom for the IBD), including both academic accommodations and housing/dining accommodations. I would also make sure your kiddo (if he/she has arthritis) can walk across the campus or can drive or can get public transportation when the weather is bad.

Also, he will have to manage advocating for himself on his own - both with professors and the office of disabilities. It's best to start practicing that in high school - explaining the conditions he has and how they affect him, explaining the accommodations he will need and how the professor can support him/her if the kiddo ends up hospitalized or needs a surgery during the semester. My daughter has been hospitalized 8-9 times since starting college and has had 7 surgeries while in college. She has mostly had great professors who have helped her a lot, but has also had some really awful professors who have refused to help her catch up and have told her to just drop the class, or have penalized her for missing class for medical reasons , so your kiddo needs to be able to fight for his/her accommodations if necessary.

Also make sure you look at leave of absence policies - my kiddo has had to take multiple semesters off for medical leave - for surgeries, flares etc. Some schools do not allow kids to just take a semester off - instead they make them take the whole year off, which can greatly extend their time in college.

 

[Jo-mom]

My son is attending University within driving distance (40 minutes) and he actually lives at home and commutes daily (bus/car). It is ideal. I know not everyone has that luxury or convenience. His choice of study happened to be at this school. It was very helpful especially when he couldn't walk a couple years ago and I was driving him as close as possible to his classes. And of course, his rheumatologist and GI and infusion centre are all within reasonable driving distance from home or school.

It's good that you are thinking ahead on this one. Things always have a way of falling into place but having a good game plan is always a good idea.

 

[Tesscorm]

Oh my!! LP is beginning to look at colleges?!? We couldn't possibly have aged as much as they have?!? But, seriously, hard to believe!

S was approx. 2 hours away from home and his GI. We asked his GI if he felt S needed a more local GI, his response was that if S was in a condition where the 2 hour drive time to get to GI was too long, S should be getting to the local hospital. So, we stayed with his GI.

We planned 'routine' follow ups and tests in advance, around exams, etc. For the most part, S continued with remi near home (great excuse for me to see him every 6 weeks! ) but when the commute time was an issue due to school work/exams, we moved his infusions to a local centre (as long as an apptmt was avail, this was just a matter of rescheduling). For small issues, S went to local walk-ins or the local hospital's ER. When there was any concern (ie shoulder surgery, respiratory/mark on lung), I contacted (or visited) local hospital and transferred tests/specialists to his GI's office and we then followed up with GI.

S was given a room which had a kitchen (based on disability). We registered with the disability office upon his acceptance/registration.

The biggest problem we dealt with were MANY repeated respiratory infections resulting in multiple px for antibiotics. No doubt remicade was a factor, however, he's still on remicade but the frequency is much, much improved since he's finished school. I think it was the proximity of so many students, shared accommodations, etc.

Close proximity to classes, grocery and other stores, etc. would be helpful. While being cold doesn't necessarily make you sick, it certainly doesn't help. I know there were many occasions when he'd go out in the middle of winter in a light jacket, no hat/scarf and often no boots simply because he'd then be more comfortable at his destination! As well, he was run down and sick so often with bronchitis, etc., it was helpful for him to be close to school and shops. So, the closer the better...

I don't think S did this but I know there were students who had their groceries delivered (if LP is not near a grocery store).

As you know, S continued with supplementary shakes while away.

 

[pdx]

Wow, time flies!

E starts college next year, and while she has made leaps and bounds in terms of what she can handle on her own, she really wanted to be able to come home for infusions and her regular appointments. Since Oregon doesn't have that many colleges and she wants to study engineering, she was basically limited to three universities. That limitation bothered her a lot last year, since most of her friends were looking farther away, but after visiting she fell in love with Oregon State. So that was a relief for her and us, since it's just a 90 minute drive away. She'll come home every 6 weeks for her infusion (which can be done on Saturday), and we're hoping that her regular GI appts can be on Friday afternoons.

The last few years of high school, she's taken a reduced class schedule, which made it easier for her to make up work when she missed school (and let her get extra sleep in the morning). She's thinking about doing the same thing freshman year in college, since she'll have quite a few credits earned via high school IB and AP classes.

 

[my little penguin]

Ds has 5-6 specialists so multiple appts and tests etc...
Hence the need for him to be able to pop over to an appt between classes vs missing a whole day

 

[my little penguin]

Thankfully no infusions just Stelara injections

 

[pdx]

Ds has 5-6 specialists so multiple appts and tests etc...
Hence the need for him to be able to pop over to an appt between classes vs missing a whole day

In that case, it really seems like it would be good to be in the same city/town as his doctors. Even an hour drive would be a hassle with that many appts.

 

[Tesscorm]

S certainly managed without a car at university and used uber/taxis when necessary. But, if LP will be going to lots of apptmts, it might be a good idea to set up an account at a car sharing company (if it available in the town/city).

 

[crohnsinct]

Well I am probably the last person you want to hear from but I will tell you this. Our old GI told us not to restrain O's choices of school based on Crohn's. He said people everywhere have the disease and not to let the disease dictate her life to her. He told us he had connections everywhere and not to worry.

We ran with it and well you know what happened. She picked a rural school AND we moved and switched to a GI who didn't have the same connections or even seem to want to bring another GI on board.

Am I repeating the same mistake with T? You betcha! She fell in love with another rural school. But honestly, even with everything O has been through it has worked out. The rural neighborhood hospital was able to get her through her sepsis and get her healthy enough to come home. We have been able to schedule appointments around breaks and maintain active phone and email relationship with her GI.

So it basically comes down to:

1 - number of specialists
2- how often he has to see them
3- do they have professional relationships with docs across the country
4- how transportable your child is when disease X is flaring and needs attention (for example even when septic, O could have made the two hour trip to a hospital and in a very severe flare was able to take an entire day to travel 2 hours to an airport, wait two hours for flight, fly 6.5 hours home and travel an hour from airport home).
5 - and most important - how mature and responsible is your child - clearly O should have gotten herself to a hospital days earlier which might have stopped her from becoming septic - but we also blame that on GI who kept saying wait and watch.

My biggest advice would be try not to pick a very rural school (even though we are doing it again).

 

[my little penguin]

I “think” if Ds ONLY had crohns it would be one thing
One specialist easy to schedule
Multiple diseases /multiple specialists means bigger hospital typically

early stages now of looking
So we will let him LOOK and once he has a shorter list try to nudge towards the bigger city schools
He just can’t miss that many classes
Also depends on what he wants to major in
Right now those majors are just at bigger city schools thank goodness

 

[crohnsinct]

True. While one specialist may have a relationship with Dr. Smith at ABC hospital, Dr. Jones might have a relationship with Dr. Jones and XYZ hospital across town. While that doesn't matter to LP and appointments and such it WILL matter with coordination of care and getting them to all work as a team and communication and such.

Major city schools or 2 hour drive from home!

Even across the country, O has been able to do it without missing any classes for 2.5 years. Given the diseases, you could get accommodations for early registration so he can work his schedule to leave a day of the week relatively free for doc appointments. O didn't get this accommodation and she was still able to do it BUT she only has Crohn's and psoriasis. Also, her university has a really good health clinic. That is another thing to look at.

1 - hours of operation
2 - staffed by physician or nurse
3 - how often physician is in/nurse is in
4 - do they have a lab/imaging

For as rural as O's school is, the university health center is amazing. They are actually a facility for the general public also. They have 4 or 5 physicians on staff, loads of nurses and NP's, a lab, x ray, pharmacy AND they will do infusions (although our insurance won't cover infusions at school health center). It is a 4 floor building, with women care center, psychological services etc. So that helps a lot.

 

[Scipio]

College selection and admissions is another specialty of mine ever since my daughters went off to college 5 - 10 years ago.

The college admissions process, especially for high-end schools, is much more complex and time intensive these days than it was back in my day. Getting into the desired college can be a big project all by itself. As for finding one with plenty of specialized docs nearby, I suggest looking at colleges that have a medical school near or right on campus with an active IBD program. Right here in town we have UCSD, one of the top IBD programs in the US. And there are many other colleges with medical schools that have excellent IBD specialists too.

In addtion to the IBD/medical care question, what sort of college and major is your son interested in? What part of the country? In which state can he claim legal residence? Prefer large school or small school? Is money for school a major constraint? Prefer a school with a big school-spirit/football scene or something more quiet and studious? Aiming for academic high end/selective school or something more middle of the road? Has he taken SAT or ACT yet?

 

[Maya142]

So after having 2 kiddos that have gone through college with fairly severe chronic illnesses (older daughter I would say is in the moderate to severe category and younger one has very severe AS and MANY other conditions, some severe, some not), I have a few comments.

1. I agree that things are a lot easier if you have a child with only one major illness. Kiddos who have more than 2-3 major illnesses or more OR if they have 1 very severe illness should probably stay closer to home or at the very least near a city with a good university/teaching hospital.
If they're seeing more than 2-10+ specialists, every 3-4 months, then they need to be close to the hospital - I would say even closer than 2 hours, if you can manage it.

I know we all want our kids to not be limited by their diseases but we also do not want their care to be compromised.

2. Like CIC said, also think about how easy/hard it is for your child to get home. Are they 1 flight away or do they need to take 2 flights and then a bus? Are they a train ride away - how hard is it to get to the train station from campus? Would they have to drive when they are not feeling well?CIC's incredible daughter managed to travel while septic, but I know my kiddo with severe arthritis could not manage that even if she was not septic! Simply traveling in a car for 4 hours (2 hours to the hospital and 2 hours back) is hard on her, and due to the sheer number of appts. and illnesses she has, we have do it weekly.

3. Many parents have mentioned that with early registration, you can arrange classes such that you have a day off for appointments. This is only true for some majors, we have found. My older daughter double majored and with her English major, arranging classes so that she had a 4 day week was easily possible. For her biology major, it was not possible - science classes are often 3 days a week and then you add lab, which can be anywhere from 3-6 hours and once or twice a week. The same happened with my younger daughter - as a biochemistry major, even with early registration, there has not been a single semester where she's had a 4 day week, except one when she didn't take a chemistry class, she only fulfilled other requirements. Science majors tend to be pretty rigid and inflexible - especially with labs and exams.

Also, with majors, think about endurance/stamina. My younger daughter sometimes says she wishes she had chosen a physically easier major - 5 hour labs are hard on her. And this semester she will have 5-6 hours of lab twice a week. She LOVES her major, but given how sick she is and the severity of her arthritis, a biology major (where labs are less physically hard) would've been easier on her. But this summer she did research in a lab in a wheelchair - so there are modifications, but that means everything is harder for her than other students, since most labs are nowhere near accessible.

4. Also, it is not always possible to choose classes based on timing, especially at a smaller school. A big state school may have many options, but in my daughters' case, science classes tend to be in the morning (which is hard with arthritis - they are most stiff and in pain in the morning) or in the evening, since afternoons are saved for lab. For kids with severe IBD who are waking up many times at night to use the bathroom, morning classes might also be hard. So while their accommodation plans say they should be given priority registration and they do have that, it doesn't really help much in their cases, unfortunately.

5. If your child has severe disease or has been hospitalized many times or has needed many surgeries in high school, get tuition insurance! Both my daughters have had to take medical leave - my younger one more than once. She has had to withdraw during the semester more than once - sometimes for flares, sometimes for surgeries etc. We would have lost a lot of tuition if we hadn't had tuition insurance.

6. Also consider the possibility that your child may need more than 8 semesters, especially if they're taking a reduced course load. Having AP and IB credits REALLY helps so I would encourage those with kids in high school to consider taking some APs. My younger daughter took enough APs that she has enough credit for almost a whole year of college, which has been very helpful and has allowed her to take a reduced course load more easily.

7. If your child is doing injections, either make sure they have had LOTS of practice before college or try and set it up so that health services give them their shots. But remember that health services can only give shots between 9 am to 5 pm.
When my older daughter was a freshman, she didn't want to give herself MTX shots - she had done it when she was younger, but MTX made her nauseous so she hated the shots. I did them for her at home. We set it up so she could have the shots administered by a nurse in the health center, but upon talking to them, she realized that she needed the shot right before bed (to sleep through the side effects), and so they wouldn't be able to do it. So she had to re-learn and do it by herself, which was stressful during the first few weeks of college.

 

[pdx]

That is a really helpful list--thank you! Is tuition insurance something that you were able to purchase through the school? And obviously it must be possible to get a policy that covers preexisting conditions?

We need to talk to the health center about shots. I think that E is willing to do a late afternoon mtx shot if necessary, if it means that she doesn't have to give it to herself...

 

[Maya142]

That is a really helpful list--thank you! Is tuition insurance something that you were able to purchase through the school? And obviously it must be possible to get a policy that covers preexisting conditions?

Yes, tuition insurance is through a company the school recommends. I highly recommend it if your child has severe disease or has been hospitalized multiple times or has had to take long breaks from middle or high school (hospital/homebound school) due to illness. It's useful for all kids with a chronic illness (or two or 12!), but I would say it's really important for those who meet the above criteria.

At both my daughters' schools, the school has a policy that if a student withdraws, they will refund tuition but it is prorated. Also, if they withdraw before the add/drop period ends (which is early in the semester typically), then the class they were taking did not show up on their transcripts. If they withdraw after that date, then they have a W on their transcript instead of a grade. So if your kiddo is like mine and insists on going to school even when she is very sick, then make sure you know the withdrawal policies (and make sure your child knows them and knows what will end up on their transcript).

My other advice would be to let your kiddo be as independent as possible in 11th and 12th grade - let them handle all their college apps, talking to guidance counselors etc. And if you are visiting colleges, make sure you go to the office of disabilities if your child loves the school - to see what accommodations they can provide. They may not be able to provide everything you want them to, so it's good to talk to them early.

We need to talk to the health center about shots. I think that E is willing to do a late afternoon mtx shot if necessary, if it means that she doesn't have to give it to herself...

I would first test out a late afternoon shot next week and see how she does. We tried that and my older daughter was much more nauseous than when she did it at night. If it works for E, that would make things a lot easier! If it doesn't, then you probably want her to start practicing giving the shot. You can ask a nurse from your pediatrician's office or GI's office to teach her. It will give her a lot more freedom if she can do her own shots.

The other option would be to appeal for the MTX auto-injectors. They're like the Humira pens - you don't see the needle. That might be easier on her - all you have to do is push a button. They are approved for JIA and RA but not Crohn's, but you can try to get them off-label. Otrexup and Rasuvo are the brand names.

 

[pdx]

More great advice--thank you.

 

[crohnsinct]

Tuition Insurance - most schools have a company that they let offer the insurance but you could go out on your own and purchase it. In our experience it does cover pre existing conditions, however, there can not be a change in treatment plan within 60 days prior to the start of class. So in our case, O has always been disqualified because she was either starting steroids or tapering steroids or hospitalized, or stopping TPN or having a dose escalation etc.

The guy I spoke with at our company said your best bet is to get it before they enter their freshman year and buy it for all four years up front. This way the only 60 day period that applies is the 60 days prior to freshman year and that's it.

Now this is just the company my daughter's school offers. Others might be less restrictive. If anyone comes across one let me know!

In O's case her school will refund you if you have to withdraw due to medical issues BUT they pro rate that amount based nohow many classes you went to. Great if you get sick at the beginning of the semester, stinks if you get sick at the end of a semester.

 

[Optimistic]

Wow, there is a lot of good stuff in here for you to ponder, MLP! I loved reading this.

We are early into the college experience so I'm not sure how I feel about school choice. He is in a major market but direct flights are at weird times of day; combine that with freshmen getting leftover classes and it is hard to make a quick trip home. We *only* have two medical issues and I see that long term it may not be practical to come home for his quarterlyish checkups. Drs can take vacation during school breaks, or it is end of year and they are booked up, and kids want to do things other than tests and drs when they are home for a break.

Over the years he has been seen several times at a major children's GI center a two-hour train ride from his school. It has a relationship with his dr at home, so that is my back up plan should he have a Crohn's issue. Age makes it tricky. Most peds don't want to see new college-aged patients, or they do it as a favor to a colleague in another market but not sure it is a long term solution. He did have another medical issue (not Crohn's related but then again maybe all their ailments are one big thing?) and the "local" very competent drs didn't understand why I wanted him to come home for treatment. He sort of sided with them and it was a bit of a hassle to convince him that coming home made MOM feel better. He seriously gave no thought to how he was going to care for himself afterward. They are grown up now you know people and have it all under control.

He only had to do labs once on his own at school. I reminded him for two weeks. And the excuse for why his FCP was delivered two weeks after that still makes no sense to me!

Accommodations is an interesting topic. He had a medical accommodations plan on file in high school even though he hadn't used it in many years. The counselor who oversees these plans was adamant about personally contacting college the spring before graduation to explain the medical situation. My son, of course, thought this was overkill but it was a great move. He met them in person the first day on campus (of course I drove this). If things go off track at least he has a relationship. The surprise was when he took a summer class elsewhere, at our state university that is rumored to be challenging for learning disability accommodations. They took a different tone on medical issues. They said kids can take tests in their office at times of day that work best for their condition. And sometimes they give kids community service hours or some other benefit to share notes with students who miss class due to a condition. This may not be new to you guys but I was pretty impressed.

 

[Maya142]

The biggest problem we dealt with were MANY repeated respiratory infections resulting in multiple px for antibiotics. No doubt remicade was a factor, however, he's still on remicade but the frequency is much, much improved since he's finished school. I think it was the proximity of so many students, shared accommodations, etc.

One of my daughters was told that a dorm is like a petri dish of bacteria by the director of the school health services. It was actually one of the reasons I let them live off-campus younger than I would've liked, because then they were sharing a house or apartment and a bathroom with a few (1-4) roommates, not like 30! I also sent them cleaning supplies regularly - I worried that they would spend their money on other things LOL and cleaning supplies would be low priority. So I sent them paper towels, Clorox wipes, Lysol - that was the only "care package" they got from me!!

The surprise was when he took a summer class elsewhere, at our state university that is rumored to be challenging for learning disability accommodations. They took a different tone on medical issues. They said kids can take tests in their office at times of day that work best for their condition. And sometimes they give kids community service hours or some other benefit to share notes with students who miss class due to a condition. This may not be new to you guys but I was pretty impressed.

Schools have all sorts of policies when it comes to notes. My daughter has a notetaker for each class and normally they are only given to kids with learning disabilities at her school, but they made an exception for her based on the severity of her arthritis. It took a while to get that accommodation in place simply because it's not supposed to be used for kids who miss class - it's for those who can't take good notes.

But since she has so many specialists (she has 16 specialists she sees yearly or more frequently than that) in so many different states that we have had to travel 2 hours each way for appointments, and 4-5 hours each way for certain procedures or to see various researchers, and since she has about an appt. a week if not more, and she has 10-12 procedures per year (if not more) requiring sedation or anesthesia and many of them have a recovery period (usually 2-5 days of increased pain) and she qualifies for one.

Anyway, just mentioning all of this to explain how we were able to justify the need for a notetaker in each class when she doesn't have a learning disability. Before she had that accommodation, she'd spend her time begging her friends for notes and then photocopying them or, if she didn't know anyone in the class, simply not getting notes at all!! Now she gets them uploaded and she just has to download them whenever she misses a class. Notetakers are paid $200 per class (!!), as an incentive, and so she gets really good notes which has enabled her to keep up with a difficult major despite missing so many days of school.

Optimistic, like you said, her school does allow her to take exams later in the day because mornings are tough - morning stiffness and pain from the arthritis. But the same is true for one of her friends who has IBS, not IBD - she tends to have diarrhea many times in the morning, so all her tests are taken in the afternoon.

Another accommodation that has really helped both my girls (when they lived on campus) was housing as close to campus as possible. They both went to schools in cities, where dorms (both normal and apartment style) were spread out. In their cases, it was due to the AS, but a kiddo with IBD who deals with fatigue might benefit from a similar accommodation. They both got disability housing, which meant they got put in good dorms that underclassmen usually didn't live in - they liked that .