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Crohn's Disease Forum » Parents of Kids with IBD » 504 Update - Pre-College


10-26-2016, 12:05 PM   #1
Jmrogers4
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504 Update - Pre-College

We have Jack's 504 review tomorrow and the nurse just asked me if there was anything we wanted to add to be more helpful in transitioning services to college. He currently has free bathroom pass, food/water allowed anytime, no tardies, extended time on assignments and shortened assignments if necessary. For you college mama's what did you ask disability office for? Separate dorm room? (Although I'm sure he wants a roommate) Close to bathroom? private bathroom?
What about missing class for infusions or such?
I tried to search past threads but didn't really find anything but I swear all this has been brought up before.
Did the disability office make a difference in college choice? So far he's applied to 3 colleges and been accepted at all 3, only one of which we visited disability office (and they were very helpful). He is applying to 3 more this week which he is likely to be accepted at as he is not applying to any schools that are difficult to get into.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-26-2016, 01:29 PM   #2
Clash
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Most colleges in our area require freshman to stay on campus but there's a huge difference between dorms. This is mainly because as new dorms have been built more amenities have been added. So each time we spoke with a colleges disability office we did request the newer suite dorms where each bedroom has a bathroom. Their main tip was request these early because they go really fast.

As far as the other requests like tardies, absences making up work etc. Most of the disability offices all stated they worked like a mediator between each professor and my son. Some professors were lackadaisical and others were to the letter.

The disabilities office at each college made clear to C that it was his responsibility to keep each professor up to date on how his health status may be affecting his classwork/testing/project etc time. They also expected C to CC the disability office in on all disability related emails between the professors and C.

It was up to C to decide whether or not to divulge his specific illnesses to his professors, he most always did.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
10-26-2016, 01:43 PM   #3
Jmrogers4
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So I guess it may be worth paying the housing deposit to his top 2 before we get all the financial packages back. Did C make his decision fairly early?
I think the stress of everything may be getting to him his labs from last infusion came back high (for him) and he had lost 7 pounds. Doing an FC right before next infusion.
10-26-2016, 03:05 PM   #4
Clash
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Because C hasn't been in remission he chose a local college that is in our hometown. He decided early on this was his best option as even though he was asymptomatic he didn't want to be in a dorm and flaring. Since the college he chose was a state College and allowed commuter students he lived off campus.

He completed his first year but by that time we knew humira wasn't working and his back issues from SpA were bad. Also, he was more focused on work than class so we pulled him after Spring semester.

Since pulling him, he has continued to work and live in his own apartment but has recently started to have some issues we are trying to determine if are related to CD. It's really a never ending circle of stress because...he's unwell so misses work then stresses about missing work then feels even worse and then stresses about rent etc etc etc.I'm so thankful he doesn't have classes to worry about (not that he worried about them ha!) on top of work.

Hopefully, we can get him to remission and he'll decide to apply himself to college.

On another note, my daughter has a friend with CD and when she was applying to colleges she did put housing deposits down on her top two choices early to get the suite type dorms. I guess it just depends on what he feels comfortable with as to whether you should spend the money.

C has also noted if he is gonna have symptoms it is always in this fall time of year. Im beginning to think he may be right.
10-26-2016, 03:36 PM   #5
Jmrogers4
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He's looking at one which is about 3 hours away and one about 7 hours away (in state & out of state). I'm hoping he picks the instate not only because it's closer but also because it's the medical college for the state so has a hospital on site, etc. However the dorms are old and not very well set up but they do have apartments which we may be able to get him into. The other one is in Montana and 7 hours away in good weather and according to their website average 86" of snow but has brand new freshman dorms set up as suites and even some single and double with their own bath.
I thought I was handling pretty well but woke up in the middle of the night last night and couldn't go back to sleep as my mind was racing with all the what if possibilities.
10-26-2016, 04:08 PM   #6
crohnsinct
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Aw JM, right there with ya except O's closest school and bottom on her list is 4 hours away! To add to it she is flaring a bit right now to!

Almost all of the schools told even the regular students to put housing deposits in soon as a lot of them don't even guarantee freshman housing So I would definitely pick those top two and put those deposits down.

We only casually spoke to the disabilities office at a few schools and they pretty much said college is much different than high school (duh, ya think?). Meaning no attendance taking in class. Complete your assignments, take the tests and you are good to go. They all did say that communication with professors was key and they would help her.

She doesn't know yet if she would prefer a hall bathroom shared with many or one bathroom in a suite that she might tie up a lot of the time.

Funny - O looked at a huge state school down south that had a hospital on campus and her and T both said, "Oh look, you can roll out of your dorm and go to infusion" Then we passed the endoscopy center and they said, "And we can get our scopes on campus. Full service school!"
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
10-26-2016, 04:26 PM   #7
Jmrogers4
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I think he would prefer Montana but he is also worried if something happens that Idaho State is closer to home and his GI, as much as I would like him closer I want him to choose not because of the Crohn's but because it's where he wants to go.
Guess we better get that new/updated disability letter from his GI so we can start on housing.
10-26-2016, 05:36 PM   #8
Maya142
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It depends on the class actually -- so for example, for languages, they do take attendance in class. And you can only miss a certain number (I think it was 3 classes per semester) and after that, they start dropping your grade by a 1/3 of a letter grade at my older daughter's school.

We did:
Use of a computer (arthritis related)
Testing done in the Office of Disabilities, so she can take breaks
Breaks in testing -- for arthritis related stiffness or bathroom breaks -- stop the clock testing
Disability housing - single room, bathroom and use of a kitchen
If not kitchen, then dining hall accommodations - they will prepare special meals for M if she is flaring and needs it (grilled chicken, baked potato etc.)
Extensions for assignments
Reduced course load if necessary (this is very important because some schools do not allow students to be part-time which is crazy)
Notetaker (since M misses classes a lot for appointments)
Make-up testing allowed (some professor do not allow make-ups even if you are sick, which is also crazy)
Extra absences for appointments/hospitalizations

We did not choose based on the Disability Office for either of my girls, but my older daughter had an awful disability coordinator the first year and that just made everything harder. Thankfully, they replaced her after a year.

Communication with the professors is key. They will also have to handle everything by themselves -- all forms, introducing themselves to professors, meeting with them to discuss accommodations, setting up alternative testing etc.

Honestly, they do the coordinating and often the Office of Disabilities doesn't do a whole lot.

The school cannot make professors let them do shorter assignments typically. If they miss, they have to make up everything usually. Some professors are really understanding and others are not. My older kiddo has had to deal with some really bad ones.
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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
10-26-2016, 05:40 PM   #9
Maya142
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We talked to someone with IBD - she said hall bathroom means no privacy. In an apartment or suite, you have more privacy and she has not had a problem with tying up the bathroom too much because all the kids are on different schedules.

So M chose apartment/suite style living for her first year and she does really like having the privacy.

If your kiddo is on shots (Humira) you need it to be mailed to the health center typically, because if it goes to the regular mail room, they take forever to process it and it won't stay cold.

So you need a note for that I think (from the doctor) and then if you want a nurse at the health center to administer it, you'd need a note for that too. My older daughter does her own shots, which makes things a bit simpler.
10-26-2016, 07:02 PM   #10
Clash
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Oooh and having a laptop or like a surface pro 4 (tablet/laptop) accommodation or class. Some classes don't allow those but joint pain (with CD and Since C has SpA) can make note taking hard.

C had a professor that did not allow them in his class and really was nasty to C about it. C gave in and just took notes by hand because he didn't want to argue.
10-26-2016, 07:07 PM   #11
Maya142
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C has arthritis in his fingers/wrists right? He should definitely have that accommodation!

M is finding that literally ALL her professors do not allow laptops in class, because they are distracting - both for the professor and the other students.

But since she has that accommodation, she is allowed to use whatever she needs to - tablet or laptop. No one has given her any trouble at all for it. She can also type exams, which is very helpful for a history class where they have to write an essay or two for a midterm.

When C goes back to school, I'd ask his rheumatologist to add that in, if possible.

We have found that getting up and walking is also helpful during a long (3 hour) exam or final, especially with back stiffness. So breaks during exams (if needed) really help.
10-26-2016, 07:19 PM   #12
Clash
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Oh it was in his accommodation but the professor went on this long diatribe about how distracting it was and that you didn't retain as much info using it compared to writing it out blah blah blah. It was directed to the whole class but still C felt awkward about having it then. After that class when he mentioned it to the professor the professor grudgingly told C that he understood but by then you couldn't have gotten C to use it in that class.
10-26-2016, 07:22 PM   #13
Maya142
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Poor C!! That's awful. I hate professors like that. There was one chemistry professor who gave my older daughter trouble for missing class for infusions (she was on Remicade at the time) . We always tried to schedule them so she missed the least amount of class but it wasn't always possible.

On the other hand, the majority of her professors have been very kind, especially once she explains the issue.
10-27-2016, 10:49 AM   #14
Tesscorm
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I don't understand how professors can be so ignorant! Both my kids have dealt with some real loser profs! Oh well, as was said above, it really will be up to him to advocate for himself... here, at least, the universities/colleges really try to keep parents out of it and have kids begin to deal with all on their own.

Although, I did once stick my nose in... cudn't help it. Don't remember exactly what it was but, S was sick, tried going to clinic, they were busy and told him they'd never get to him so to go to another clinic (no other one really close by) or go back another day. Whatever it was, I was worried about it and a connection to remicade and wanted him seen. So, I called the clinic, told him his file should show he is on remicade and, given his symptoms, should be seen right away. Nurse I spoke to agreed and told me to send him right back... so, if all else fails, sometimes a parent's voice is still necessary.

As far as his room, when he applied, there was an area on his application where he could note special requests, etc. He requested the apartment style room due to his crohns and explained having access to the bathroom (shared only with one other roommate) and full kitchen would be helpful. At some of the universities here, the apartment style dorms are given to disabilities first and, then, students with highest entry marks are the next to be offered the apartments.

S didn't have much dealing with his disability office but, I did speak to the onsite medical clinic when he initially started and forwarded a letter from his GI noting his dx and requesting concessions re infusions, etc.

May be different up here but, S's school only offered residence/dorms for first year. Since 2nd year, S has rented an aptmt with 4 other friends. Each bedroom has a private bathroom. Hard to think about 2nd year so soon but, he and his friends were already looking into 2nd year accommodations by Dec/Jan of their first year.
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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
11-07-2016, 11:18 PM   #15
Mehita
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Can't we just lock them in their bedrooms and keep them home forever? Wait, did I really just say that? *SMH*

We just got back from another college visit and my mind is buzzing. I think the most frustrating part right now is both DH and DS are thinking a private or semi-private bathroom is not a big deal. I just spent three nights in a hotel room with DS and had to use the bathroom down the hall twice because he was in ours. I just don't see how he will manage in a 30+ person bathroom. He claims availability is more important than privacy. Maybe it's a guy thing, but I'm not buying it.

My friend's daughter has OCD and was given a double room, via the disability office, with two girls sharing one bathroom. Nothing against OCD, but I'd have to think Crohn's (and Celiac) would trump OCD. Yes?

On the drive home, DS was talking about how he has no idea how he's going to decide where to go. Fortunately or unfortunately, I think if the indecisiveness continues next year, he's going to pick the U of MN just by default - which I would totally be okay with!! It's highly ranked for his major and only a twenty minute drive!
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
11-07-2016, 11:28 PM   #16
Maya142
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I don't think the disability matters - if they have an accommodation for a semi-private bathroom, the school will give it to them (assuming they don't run out of rooms). It doesn't matter whether it's OCD or Crohn's or something else.

My daughter much prefers privacy. She has never had a problem with the bathroom being available and she shares an apartment with 4 other girls! There is also a bathroom in the lounge and one in the lobby, so if she really has to go, she can go there.

He should just think carefully about what he prefers -- diarrhea in a public bathroom does not sound like fun to me! But it really comes down to preference.

I will say that a public/hall bathroom is cleaned by the school, while apartment/suite bathrooms are usually cleaned by the students. My kiddo does not mind at all, because her roommates are pretty clean but I could see a private bathroom become pretty awful if kids don't clean up after themselves!

I would also think about the unpleasant parts of IBD - accidents, enemas, suppositories. Hopefully he will be in remission and won't have to deal with any of that, but it's much easier to clean up in a private/semi-private bathroom than a big public bathroom with kids coming and going.
11-07-2016, 11:45 PM   #17
Mehita
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Excellent points, Maya! Now I just need to find someone to tell him this so he might actually listen. Want his cell #?

Being in remission for so long now (knock on wood!), I think he's forgotten how un-fun Crohn's and flaring can be.
11-08-2016, 12:01 AM   #18
Maya142
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Ask him if he would be comfortable going to the bathroom at high school - when he's flaring and has messy diarrhea. It might be loud, it might take a while...

That's kind of what it will be like - except you live with your classmates, so you can't really get away from them after that!

Some kids, of course, don't care at all and are fine with a hall bathroom. Others care a lot and would be embarrassed.

The key is knowing what will make the transition to college easiest for your kid. It's a hard transition - we found it MUCH harder than the transition from middle school to high school. They have to take care of a lot more stuff by themselves and often have to do it when they're not feeling well.

But it can be done - it just takes a lot of planning ahead and a little bit of luck.
11-08-2016, 12:04 AM   #19
Maya142
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It is definitely extra tough when your kiddo has been in remission for a while. They forget very quickly how miserable they are when they're flaring.

Someone here once said to "prepare for the worst and hope for the best" - I think that's a good rule.
11-08-2016, 10:28 AM   #20
Jmrogers4
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I think we've finished with all our college tours now it's just down to decision time. He's already been accepted everywhere he has applied to. Highly recommend if the schools you are applying to have early action to go that route so they (you) are not anxiously awaiting replies, less stress.
He's narrowed it down to top 2, 1 in state and 1 out of state. Now it's just applying for scholarships..
11-08-2016, 12:36 PM   #21
Mehita
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Check out CCFA scholarships. There were also a couple I came across specific to kids with chronic illnesses. Not to milk the cow too much, but our kids have gone through a lot in their lives already. They deserve some good things too!
11-08-2016, 01:15 PM   #22
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Waiting for the Abbvie one to open and the intense intestines as well. Those are the only ones I'm aware of. Have you seen others?
When it comes to paying for college every little bit helps.
11-08-2016, 03:33 PM   #23
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11-08-2016, 03:35 PM   #24
my little penguin
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11-08-2016, 06:35 PM   #25
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www.fastweb.com is one I just heard about today. Neighbor found and earned three from there so far.
11-08-2016, 08:47 PM   #26
Tesscorm
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Good luck with the choices and decisions! Pros and cons whichever decision is made. Maya made a good point with who`s cleaning the bathroom! In all the years S has been at school, I`ve yet to see his bathroom! I was once in his apt, about to leave for home and said ``I need to use the bathroom. Should I use yours or stop at the donut shop down the street.`` He said ``the donut shop might be better.`` I didn`t argue!

I just send him lots of antibacterial wipes! Most visits...

Another suggestion, once they are out of residence... S and his roommates periodically hire a cleaning woman to come and clean their apt... (Poor woman!)

While in residence, some enterprising girls down the hall had a `business offer` that the boys made good use of... the girls would come and clean the kitchen, wash dishes, etc. for $1 per minute. S said it would take them about 30 minutes, and between 4 roommates, he said it was worth the cost!
11-08-2016, 09:06 PM   #27
Maya142
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Boys are definitely a different species! My daughter asks for Clorox wipes and other cleaning supplies every time we visit her!
11-09-2016, 12:46 PM   #28
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While in residence, some enterprising girls down the hall had a `business offer` that the boys made good use of... the girls would come and clean the kitchen, wash dishes, etc. for $1 per minute. S said it would take them about 30 minutes, and between 4 roommates, he said it was worth the cost!
Bloody brilliant women!
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I'm mom to............... Little Farm Girl 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
11-09-2016, 04:15 PM   #29
Jmrogers4
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So one college has a weekly linen exchange but then I think would he actually take the time to pull off sheets and exchange because then he would have to put the new one on but then again he might be more likely to do that then actually having to wash them himself. I have taught him to do laundry it's just the actual execution of it himself. His solution to not having any clean socks; "mom, we need to buy more socks I don't have any" Of course his laundry basket was full of dirty ones. He did actually finally wash them because I told him to and that I wasn't buying him any more socks.

Back when my brother and I were in college and I was living at home while he was living in a fraternity on campus about once a week he would bring laundry home (of course it never seemed to be just his) the deal was whatever money we found in the pockets was ours to keep. It was usually between $50-$100.
11-10-2016, 10:00 AM   #30
Tesscorm
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Ugh, I don't even want to think about the frequency (or lack of) of S's bed linen changes! It so used to stress me but I've learned to block things out!

And, yes, I have the same when S brings home laundry (although have never found money! )... sheets, towels, clothing that isn't ours (and, I highly doubt, S has gone shopping for new linens!). I didnt' even question the pretty pastel pink and blue pillow case! I just wash, dry and fold.
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