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Crohn's Disease Forum » Parents of Kids with IBD » 504 plans for school


09-07-2017, 06:05 PM   #1
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
504 plans for school

I've started a 504 plan for one daughter a couple years ago. I'm getting one for her sister and we are going to go over the first at the same time.
What have you included in your child's 504 that was really helpful with battling Crohns? Thanks!


09-07-2017, 06:26 PM   #2
my little penguin
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Join Date: Apr 2012

My Support Groups:
http://www.crohnscolitisfoundation.o...-504-plan.html


Template for 504 plan

Ds has stop the clock testing
Water bottle
Snacks as needed
Ability to self regulate in class /gym ( meaning he can rest as much as possible )
Extra set of textbooks ( not really necessary since most are online )
Written Copy of missed work /email or paper

CArd system- he places a fluorescent lamented card on the desk with his name
Color coded
One for nurse one for bathroom so he doesn't have to ask permission to leave
Desk closest to the door
Spare clothes at the nurse

Good luck
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09-07-2017, 07:06 PM   #3
Maya142
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We had all of the accommodations that MLP mentioned. Stop the clock testing really helped my daughter - it took the anxiety out of tests since she knew she could go to the bathroom whenever she needed to.

We eventually got a medical exemption for gym, but that was more for her arthritis than for her Crohn's.

Before that, she was allowed to choose about participating - if she felt up to, she participated, if not, she could sit out.

It really helps having all the accommodations set up before state testing and once they are older, the SAT or ACT (I know your girls are far away from that!).
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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
09-07-2017, 09:13 PM   #4
Optimistic
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Join Date: Oct 2014

My Support Groups:
I'll go check ours, but I recall:

Copies of teacher notes
Audio books when available (I thought this was weird when school suggested but when flaring is helpful)
Access to refrigerator
Ability to rest in nurse office if needed during an art, language, PE, recess, non-core class

You want that stop the clock testing to start now so there is a history when it comes to sat/act accommodations.
09-07-2017, 09:49 PM   #5
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
I used info from the Crohns and colitis foundation page for the first 504, just wondering if you had anymore ideas that have really worked for you. The current plan is almost identical to what you have all listed. If you think of anything else that would be a great add please feel free to share. Our meeting isn't until October.


09-07-2017, 10:06 PM   #6
Maya142
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Feeding tube Awareness also has good info if they need to be tube fed at school. I can't remember - are they on continuous feeds or bolus feeds? I know one of your girls has a G tube.

My daughter only did feeds at night for the most part.

But there was a period of 3 months when she had to be attached to the pump for 18-20 hours per day, so she had to be fed at school. She just took her backpack with the pump in it. I emailed all her teachers explaining that it may beep in the middle of class. There were amazingly no major mishaps.

The line did kink and clog and the pump beeped and she said it was a pain and embarrassing, but other than minor things like that, it worked well.

By then, she was a high school senior, so she did everything herself. But for a younger child you may need an aide or the help of a nurse.
09-09-2017, 08:05 AM   #7
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Both girls do night time feeds. Abby gets her g-tube placement on the 27th. She excited to not have the NG tube anymore but she's nervous about the procedure.


09-09-2017, 08:07 AM   #8
my little penguin
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Are they 100% een as treatment ?
I would still include it in the 504 so you have Een as a treatment option if needed
(Which would mean feeds at school
09-09-2017, 02:16 PM   #9
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
No, they are 80% EN
Ok, I'll bring that up. Thanks.


09-09-2017, 02:56 PM   #10
my little penguin
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Join Date: Apr 2012

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If they are 80% een
Don't they need feeds at school?
Going that long without real calories (even though they get enough total )
Is very hard on the body of kids physically and emotionally
Since formula digests quickly (less than four hours closer to two hours )
Most kids needs to eat every four hours so their blood sugar doesn't drop

Formula causes blood sugar spikes
So much harder to go longer

Have you checked in with the kids to see how hungry they are getting ?


When Ds was 100% or 80% een
We figured out a lot of the above
I never thought about it
09-09-2017, 03:32 PM   #11
Maya142
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We were not able to do 80% EN without doing feeds at school. My daughter was on 85% formula, 15% food and we had to do feeds for 18-20 hours a day.

But I'm guessing your girls' feeds run at much higher rates, which is how you do it all at night?

M was getting 100 mL/hr, but into a NJ tube. It bypassed her stomach but she wasn't hungry. But she was getting calories all day, so that helped. And she was allowed to eat a little at school.

At the time, she had been so malnourished for so long and was so unused to eating, she didn't even seem to remember what hunger felt like. We quickly figured out that she would get cranky and upset when she was hungry or she'd find it difficult to concentrate or get a headache.

Her stomach was just so unused to food, she didn't feel normal hunger.
09-09-2017, 04:11 PM   #12
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
They eat lunch at school and a little dinner at home, so I think they are getting everything they need. We usually start the feeds at about 7:00 pm and Emma gets 3 cans, Abby gets 4. They are usually done around 5:30-6:00 ish.


09-09-2017, 04:27 PM   #13
Maya142
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Glad it is working!! Hope Abby's G tube surgery goes well.
09-13-2017, 07:57 AM   #14
sabrina123
 
Join Date: Aug 2016
I second the audio books. They are a huge help when someone is not feeling well.

As a bonus, my daughter now uses more audio books for pleasure. She also uses them as a soothing part of her preparing to go to sleep.
09-14-2017, 07:37 AM   #15
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
What about adding something because of a immune system suppressant like MTX? I was thinking about putting something in about her being moved away from students who are showing signs of cold, etc. Thoughts?


09-14-2017, 07:50 AM   #16
my little penguin
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Join Date: Apr 2012

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Not necessary
Ds has been on biologics plus mtx for 6 years 2nd to 8th grade
Never go any more colds than my other kids
In fact got less
Just a flu shot and washing hands
Nothing more

It doesn't make them more likely to catch a cold
The part it surpresses makes an opportunistic infection likely ( i.e. If you get the flu pneumonia is more likely )

Add in these kids are different enough
Make them stand out more than necessary will make their teen years a disaster
Since self esteem etc is built in elementary school
09-14-2017, 10:55 AM   #17
Maya142
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We didn't do that on biologics or MTX and my girls were fine through middle, high school and even college.

They both got about 1 or 2 colds per year - which is what they got prior to biologics.

We did get the flu shot every year - our doctors insisted on that. And I encouraged them to wash their hands a lot.
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