Crohn's Disease Forum » Parents of Kids with IBD » What are my daughters rights in school

03-11-2013, 07:30 AM   #1
tnsunshine's Avatar
Join Date: Jan 2013
Location: Estill Springs, Tennessee
What are my daughters rights in school

Can anyone in Tennessee share with me my options(besides home school too late in the year) for my daughter when it comes to 504 plans at school. She has recently had a bad flare and is on 40 predinsone and had been on homebound but that will soon stop. She had been dealing with Crohns since kindergarten but this year she is at Junior high and is scared to return to school with her "moon face" to get made fun of by students that don't know her history. I am so scared that this will throw her back into a flare with the anxiety and drama of it all. I really need to know if Crohns is classified as a disability in our school system and how do I get better modifications (right now her only modification is if she fails a test she gets a retry) for her 504 what are the limits??
Thank you in advance!!
03-11-2013, 08:29 AM   #2
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Brian'sMom's Avatar
Join Date: Dec 2010
Location: Kansas

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We're in Kansas...but We worked with the school councelor who worked with our son's core teachers. They wrote out the plan. He also is in junior high. They tailored his 504 to his needs. Stated in the 504 is a year long bathroom pass; He's allowed to leave a classroom without a pass...or if its an emergency- without even talking to the teacher. It states that he may miss large amounts of school if he flares. They want me to pick up homework daily, but only if possible, and teachers work with me to keep him caught up. It states that he's allowed to make up all homework and 'master the concepts' before he is ever tested over the material. And there is a part about PE...if he needs to sit out or take breaks. And if he needs to take any kind of medicine or supplements at school he will be given time during school to do this with the nurse.

As for the kids making fun...that's something my son doesn't let bother him much. He is short and very thin...but he has such a sense of humor that the boys like him. They made their "shrimp" comments a few years back...that's passed now. As for girls.....I know they can be caddy. My daughter doesn't have crohns and still had to deal with girls making fun about various things. Kinda unavoidable I guess.
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
03-11-2013, 10:46 AM   #3
Jmrogers4's Avatar
I answered your other thread but Crohn's is classified through the ADA as a disability so all schools have to recognize it as a disability. However, that doesn't mean they have to accept every accomodation but I have found they will accept every reasonable one. I posted what is on Jack's in the other thread

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
03-11-2013, 11:17 AM   #4
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Hope345's Avatar
If she is ready to face school head on, that is great. I am sure the school will work with you and it will be just fine.
however, if home school is a possibility for her, I am all for that too.
My daughter missed half of 7th grade, and 8th grade was not going well either. We were working hard to get her into remission, the school was doing there best to help, but she was just not able to be there. Once we made the decision to home school, it has been the best decision for her. I believe it is very stressful for them, and I am the position to teach her at home. With all that is offered on the internet it is a lot easier than you think.

Our plan is to get her back to school this fall. If we have to do home school in the future, I did find a site call k12 that sends you everything you need for FREE, offers teachers to help you and it is real on line school.

One thing the vice principal kept telling me, is, it is only middle school, dont worry, her health is most important. It is amazing how much you can get done at home. There is actually a lot of wasted time at school.

Let me know if I can help with anything and best to your daughter. I know how hard it is.
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
03-11-2013, 01:04 PM   #5
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Join Date: Oct 2010
Location: NY

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I am in NY. My son had the school provide home instruction (a different teacher came to our home every day, 2 hours a day) for part of 6th grade and ALL of 7th, 8th and 9th grade. He was not well enough to attend school. Crohn's was listed as the disability ... and it was not controlled. (Fatigue and headache were his most debilitating symptoms school-wise. Constant ab pain and frequent D were more manageable for him.) A doctor's note and school form was all that was required. We even got him excused from the standardized tests for 8th grade since he was not even well enough to do that at the time. He is now attending 10th grade (super happy!) with the normal school accommodations in a 504 for kids with Crohn's.
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
03-11-2013, 11:38 PM   #6
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vtfamily's Avatar
Join Date: Mar 2013
Location: Palmdale, California

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My son has also been battling Crohn's since Kindergarten and is now in 7th grade. He has been battling strictures and a bad flare all year. Most recently, he has missed the entire first half of this quarter of school due to pain and hospitalizations.

In this round, he started taking prednisone, had a PICC line put into his arm and is on TPN nutrition. It's been a kind of a pattern. One week off of school in pain. One week in the hospital. One week catching up on three weeks worth of school work at home. Repeat.

He finally returned to school today...with the moon face and a new set of tube hanging out of his arm! He made it through the entire day!! We are hoping to make it two in a row tomorrow. Bottomline, his friends and teachers were happy to see him. If kids have questions, he just answers them the best he can.

My best suggestion is to talk to the teachers. They are usually understanding about these situations. You might even be able suggest an alternative "mega assignment" where you combine subjects into one project. For example, if they are studying Feudalism and the Black Plague in history, maybe she can write a paper that would count for English and History.

If you feel really lost, you can go on the CCFA website. They have great suggestions for the 504 plan...including the form itself. You can also ask the school about how they have handled 504 plans and accommodations for other students in the past. Just know that everyone WANTS you daughter to succeed!

Best wishes to you.
03-12-2013, 03:03 AM   #7
Marni's mom
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Join Date: Jan 2013
Location: Houston, Texas

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Wow, this is great information and advice. I have a meeting scheduled with Marni's school staff on March 28th to get the 504 ball rolling. I'm glad I ran across this thread!

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