Community Forum

I was first just looking for some feedback from parents with school aged children with Crohns.  I was wondering about how many days of school their children have missed due to their Crohns.  I was also wondering what your thoughts were about letting your child stay home when they are just fatigued.  Do you force them to go so they don't think they can stay home for any reason at all or do you allow them to stay home because they're tired. 

 Reply posted for crohnsmomof2.

My 14 year old son was diagnosed last July with UC.  He missed 65 days of school this year (and worked so hard to keep straight A's in all advanced classes).  Have you looked into getting a 504 plan?  We are currently getting treatment at Cincinnati Children's and they recommended this to me, especially as your child gets older and high school credits become a factor.  It has so many protective provisions for your child and fatigue is a very real debilitating symptom.

 Reply posted for vivacemartin.

oh...forgot to give my email

marcellag0642@aol.com if you want to share the PPT presentation...I understand if not.

Marcella

 Reply posted for vivacemartin.

My 8 yr old son was diagnosed this year and so far he has missed more than a month of school The school had to disenroll him and then I had to re-enroll him in order to let him pass to next grade level. He has two weeks left and now another flare so we'll see.

Also...I would love to see that Powerpoint if possible...Marcella

 Reply posted for crohnsmomof2.

My daughter Elizabeth has had UC since she was 6, is now 10.  Last year she was hit with mono and was out of school 40 days.  This year she has been hospitalized two times with her UC and has missed 50 days.

Yes, I do allow her to stay home when she is fatigued, nauseated, has headaches, abdominal cramps.  She loves school and is extremely social so I know when she says she is not feeling well. She is very bright so staying on top of her studies isn't an issue.  Sometimes she seems more fatigued and has stomach pains first thing in the morning so will go to school in the afternoon.  It is difficult because you don't want them to miss out, but at the same time, to sit at a desk and feel miserable, cold and alone (because she cant explain it to her friends) seems cruel. 

Two weeks ago, after a couple of boys teased her about faking being sick, per her school counselors advice, we did a power point presentation for her class.  You could hear a pin drop and they were so in awe of what she had and we added the famous people that also have this disease (We censored details, of course and referred to it as an intestinal disease).  They want us to do it again next year for her class. 

We don't understand what they go through, only medically, so I let her lead.  She is a competitive dancer and is very passionate about it, so I always know when she is having a bad day/week........she isn't spinning around the house.  It takes patience and understanding.  She was in school 3 straight weeks, missed 10 days and has been in since last Monday....we treasure the good days and get through the bad ones.  Good luck with your son!

 Reply posted for crohnsmomof2.

i am a high school student i was diagnosised at the begiining of my junior year. I was absent over 90 days that year. i maybe only stayed home 5 of those days because i didnt feel well. the rest of those i was hospitalized. Also speaking from experience of a student, i would sometimes take advantage of my disease so i didnt have to go to school, saying that i was sick and didnt think i could make it. i would also call my mom to come get me after certain classes so  i didnt have to go to the ones that i didnt like. but schools have programs for kids with medical problems so that the absences dont count against them, which helps when you are in high school and can exempt examines and in lower schools they have them so that your child doesnt get held back due to the absences. I would take your childs feelings and the way the feel into consideration dont try to force them if they really arent feeling well because if it is an onset of a flare it can bring it on due to the stress.

hope i could help

 Reply posted for breezy.

My daughter has only been diagnosed since February of this year, but has been sick and dealing with this since last January. She is 7 and is in 1st grade, This school year she has missed 12 days of school and it looks like she will be missing again tomorrow.   I only keep her home when she has a fever, if I kept her home every time she was fatigued it would be everyday. She is very sickly with this disease so I try to push her to go to school anytime she is fever free. If she isn't feeling well her teacher always calls me and I usually pick her up! I have on file at school all of her medical info and they are all aware so they understand if she isn't there and they understand when she isn't feeling well.

I would just do what feels right to you. If your child doesn't feel well do what you feel is right. I always tell myself I am my daughters voice! I know it is stressful and I hope you hang in there. I know the struggles not only cause of my daughter but I have 3 first cousins with it as well. Stay strong and my thoughts and prayers go out to you!

 Reply posted for crohnsmomof2.

Hugs! 

I did not have to face this with my kids but here is how I handle myself and sick days- I go to work if it is at all possible.  I do not put myself in jeopardy.  If I need to leave work, I do.  If your child is old enough, talk to him/her about this.  Talk to the doc.  Rest is the most important thing somedays.  I wish I had an answer for you. 

Breezy