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 I have ulcertive colits was dx 20 years ago. My son was just dx 1 year ago. ( talk about feeling guilty) we have trird several meds and he has han allergic reaction to them all ( asacol and the like) he was on steriods for about 5 months and gained about 30 pounds ( he was my stick kid) He just started 6th grade last monday.  i got him to go to school for 1 day now he says that his syomsache hurts to much to go. I know what the pain is like but i still need him to go to school. I think he is scared to go, we have talked to the school cousler and teachers so they know whats going on. Right know we are trying entocort and than going to start lialda if this med doedn't work the we have to try 6mp which scares me. My problem is how do I get him to go to school ( to make matters worse this is a new school the a new neighborhood we have moved 2 hours away from all him friends. We did move up here when he was in 5th grade but he was to sick to go now he has no friends at school.

help please

tami

 Reply posted for tami.

My son is a freshmen and was diagnosed last year in middle school with crohn's - we are also new to the area and he has very few friends.  Everyday it is something - we have a 504 in place but the school and I really just want him to go to school for the social aspect - he has become very isolated.  He has always been a straight a student and very athletic.  He now has all F's and hasn't played any sports since last soccer season.  My heart breaks because he is just missing out on so much of his life but I know he is in lots of pain.  Physically and emotionally - and being 14 doesn't help.  We are convinced that his crohn's was triggered by a flu virus a year previous that left him with total deafness in one ear. (which also causes him to have occasional vertigo and ringing).  Sorry about rambling on.....Just wanted to let you know that you're not alone.  Good luck!!!

 Reply posted for mominmichigan.

One thing I want to recommend to all parents is to set up a 504 plan at your childs school.  This is part of the Americans with Disablity Act, and it puts into place the legal rights of your child to be accommodated.  You can have it cover everything to getting to use a different bathroom, the right to leave to go to a bathroom anytime they want, not having to sit next a sick kid, homework issues.  Really important to put it in place now, so that when they are in high school, college, or sitting for an SAT test, they can be accommodated.  The plan travels with them, and is just reviewed annually.

Somewhere on this website is a sample 504 Plan.  Print it up, and set it up at your childs school.  We did it recently, and it was a great thing we did for my 13 year old daughter.

 Reply posted for tami.

My daughter has had uc since she was 6.  Last year, starting 4th grade (age 8) in a new school, she began a flare immediately.  Her greatest fear and stress was she only saw one bathroom at the newcomer's meeting.  I assured here there were many bathrooms and in speaking with her teachers we got her setttled in school.  Of course, the cramping didn't stop and with her immune system now compromised even more, she ended up with mono and hepatitis by the second month.  She missed 40 days of school and we really had to work at keeping her there.  We tried many half days, etc.

She became very down because she was new and wasn't making friends so we did a couple things........the students all sent cards home to her, when she did go in, her teacher really worked at getting her connected, and we allowed her to have an email address.  This allowed her to email her teacher who really was this great cheerleader with many encouraging words and if any of the kids wanted to write her, she would get their email addresses and she was able to connect with them too.  In the end, she ended up with a bunch of great friends, but we definitely worked hard to get the transition to work. 

When school/stomach was tough, our policy was to go anyway at least until lunch and if it was too bad to call us.  Sometimes we would get a call, while other times ......nothing.  In living with a disease like this, they have to learn how to do just that and mornings seem to be worse at times, but once they get going, they can get through it as long as connections are made at school and they don't feel the intense insecurities that have developed.  You will always have days that they absolutely won't go, but I think a variety of angles help.  Be open to your school counselor too and make sure your son knows he can always go to them to chat (although that may be eaiser for girls than boys:)   Best of luck to you and your son! 

 Reply posted for tami.

i was like that when i was a senior in high school (of all years!) and had a very hard time getting it thru to my mom.  {little back story: i started getting sick as a freshman so drs that it was nerves, attn, hatrid of school, anorexia etc. etc. etc  and was pretty off and on but was 10 times worse by senior year.} by the time 20 or so school days had passed, i was either very late or didn't go at all for half of them.  my mom finally got that it wasn't "fun" for me to stay home and found a way to get the school to let me stay home.  in the county i live in in va, they have something called "homebound" for kids that have cancer, been in a bad accident, really really sick...  and send a teacher out to the house a couple days a week for a couple hours each time so students can complete their school work.  i ended up having to have it the whole year b/c while they diagnosed me with crohn's late in the fall (which the dr said he didn't think i really had so i went to a new dr) he couldn't treat my symptoms (he then sent me to the cleveland clinic a year later and they told me i had fibromyalgia...  grrreat!) but was luckily able to still graduate and everything with my friends.

see if your son's school has anything like that.  it really is helpful.  that way once his meds get all straight, you can send him back to school and he won't have to worry about catching up to everyone else.

 Reply posted for tami.

I am having the same problem with my ten year old son.  School started last week and he is in 5th grade.  We had a meeting with all of his teachers and the vice principal about his 504 plan and his needs the week before school started.  The first week there was an incident with the bathroom and he missed one day last week.  Now in the second week he has missed a day and due to having an accident this morning at school he is home again.  I feel his worries and anxiety is not helping his Crohns flare.  What do you do?  I am actually checking into the home schooling but both my husband and I work.  I have reduced my schedule due to his crohns.  If anyone has any ideas I would appreciate it also.

Marsha

 Reply posted for tami.

Thanks, Tami... we are going back to the doctor next week (with  a huge list of questions!)  I think that the doctor we have is a good one.  At least he seems to be patient and willing to talk and spend as much time as needed.  And he seems very kind with my son too.  So much to process!  I hope you and your child are well.  Take care.

 Reply posted for mominmichigan.

thanx for answering me. we have talked to the school and counslors and they have him on indepent studies (sorry bad speller) we had to back on the predizone (yeak) the med lialda made him worse. we will have to try the 6mp know which scares me.

Don't feel guilty about not listening to the stomache ache complaint we have all done that and I am a parent with the same illness. Just make sure you have a good dr to get all the info you need and you can talk to him/her without them talking down to you. (bin there done that). if you have any question or just need to talk to someone email me if your son wants to talk to someone going through the some thing again we can talk.

tami

tami@pictureflipper.com

 Reply posted for tami.

Hi Tami,  

Sixth grade is a big transition year and really hard for many kids, even those not dealing with a chronic illness and a move to deal with.   It is really daunting to go from being one of a classroom to one of a class!  It sounds like youve done the right things by talking with the school... have the counselor and teacher talked to your son, reassuring him that if he really feels he needs to leave they will take him seriously and let him call you?  If not, maybe that would help... if he knew that they knew what plans were in place to deal with his illness.  The other thing I might try is to find out from the counselor if there are any other sixth graders new to the area who you could be introduced to. 

Youve probably already thought of these things.  I mostly wanted to just let you know that youre not alone and say hi.  My sons diagnosis is new this summer so I dont really know much in the way of advice.  Im working on getting over the guilt of not having listened to Matts complaining of a stomach ache most of the last few months of school last year!  Good luck.  Keep me posted how its going.