My daughter Hailey is going back to school Monday after 6 weeks off....Have a question

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ljf01
New Member


Date Joined Feb 2008
Total Posts : 18
   Posted 3/7/2008 8:30 PM (GMT -6)   
Hi all,
 
My daughter Hailey is going back to school Monday....woo hoo! She is happy to get back after about 6 weeks off. My husband and I are having a meeting with the school staff Monday morning to discuss Hailey's condition, and am wondering if anyone has any tips as to specific things to ask or tell them, etc.  I'm planning on asking for Hailey to be allowed to leave the classroom if she has the urge to go without wating for a hall pass. I'm also asking to allow her to use the nurses bathroom if she is cramping. Any other ideas would be helpful.
 
Thanks!
 
Laura

Mom to Hailey(age 9)....she was just diagnosed with ulcerative colitis mid Feb 2008
Currently on 500mg pentasa 3x/day, 15mg prednisolone 2x/day, and 25mg 6mp 1x/day which was started Mar 6th


Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 3/7/2008 9:03 PM (GMT -6)   
What grade is Hailey in? Just knowing that she can leave for a bathroom break at any given time is the most important thing I would think. I just wonder, when she is flaring if she would be able to just use the nurses bathroom at any given time? I know that with this disease, unpleasant odors can arise and it can make a kid self conscious. And to have to use a school restroom with other kids possibly around can increase the stress level a bit.
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pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/7/2008 9:06 PM (GMT -6)   
I'm glad to hear she's feeling well enough to go back...when I started to feel well enough to go back out into the world again (as I was sheltered in my house for about 3 yrs, even struggling with being in the yard) maybe have her wear pads for "security" both physically and emotionally.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 3/7/2008 9:33 PM (GMT -6)   

Hi. I am so happy your daughter is able to get back to school. My daughter missed 9 weeks last year (October/November) and again about 9 weeks this year (almost the same time of year).

We have a 504 plan in place with the school district.  It lists her "disability". It describes how the disability limits activity. In her 504 plan it says she is often absent based on symptoms and medication adjustments. It gives an accommodation plan. For her it has--unlimited access to restroom, no penalties for lateness due to use of restroom, allowed to drink fluids or have snacks as needed, separate location for testing as needed, 50% extended time for test settings, self-limit activities and excuse from Phys. Ed. as needed.

My daughter was 15 when she was diagnosed. We worked with her guidance counselor (who was the intermediary between us and the school). I think we needed to get a note from the doctor (the guidance counselor told us what he should write).

My daughter rarely uses these accommodations. They are in place "just in case".  She has never had any trouble with any of her teachers.  When she was out, she tried to keep up with as much work as possible. When she returned, most of the teachers worked with her to allow her time to make up some of the work. Her guidance counselor has been a godsend and has been there every step of the way.  My daughter is an honors student through it all.

Each year we have to renew/update the 504 plan. We needed to get a new doctor's note (said the same thing as last year). We sign, the school signs, that's it.

We also registered for accommodations with College Board (for Regents) and will do the same for ACT testing. Again, it is a one-time registration. It also gives her 50% extra time if needed. If nothing else, the extra time gives her peace of mind and let's her concentrate on the test not the illness.

Besides the 504 plan, I would get in touch with the teacher, the nurse, and the principal. I have found that if I am up front with everyone, it works fine.

If you need any help, let me know. 


--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 3/8/2008 8:06 AM (GMT -6)   
I think the nurses bathroom idea is a good one! Anything where she can have a little more privacy makes sense.

If urgency is a big issue and you think she's afraid of an accident, you could also ask the nurse if she could leave a little "emergency pack" there. Just extra underwear and some wipes. If this is not an issue for your daughter, I wouldn't bring it up since it could just add to her anxiety.

Glad to hear the good news about the return to school. I'm sure that your speaking with the school will make things so much easier for your daughter.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)


UC Mom
Regular Member


Date Joined Jun 2007
Total Posts : 146
   Posted 3/8/2008 8:09 AM (GMT -6)   
Our school nurse is a sweetie. She notified all of my son's teachers, as well as giving him access to the bathroom in the nurse's room. If he is ever a little late to school, (because he can't get out of the bathroom) he stops by her office, and she gives him a pass. We also filled out all of the paperwork, so he has a file, and may also self administer his medication at school. The GI has to sign off too. Good luck!!!
UC Mom
Son diagnosed 10, 2006 at age 15
Prednisone
6MP (just started 50 mg per day)
Culturelle Probiotic
Multi Vitamin


mrsjewell06
Regular Member


Date Joined Apr 2006
Total Posts : 77
   Posted 3/8/2008 8:16 AM (GMT -6)   
Yeah I would just make sure she can leave at any given time to use the restroom and if she is late because of restroom issues that can be excused.....I think having the nurses bathroom or any bathroom open to her is a good idea because sometimes it's hard to make it all the way to the student bathroom! Good luck to her.....I remember being in school with UC.....no fun at all!
*~* Beth *~*
Ulcerative Colitis ~ Diag. 2001 (Pancolitis)
~April '06 (Left-Sided Colitis)...right half of my colon "healed!"
Sulfasalazine 2 x 3 times a day
Womens Multi-Vitamin, & GNC Probiotics
Testing the waters with Aloe Vera & Fish Oil
Currently: Feeling Better! *Hopefully back in remission!*



hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 3/8/2008 11:42 AM (GMT -6)   
my friend dealt with crohn's all thru school and the school allowed her a permanent bathroom pass.
other ideas so far sound great! glad to hear she is excited to go back.
28, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Asacol, probiotics, ground psyllium husk, fish oil, prenatal

may you live all the days of your life.


ljf01
New Member


Date Joined Feb 2008
Total Posts : 18
   Posted 3/8/2008 4:41 PM (GMT -6)   
Thanks for all the great ideas! I hope it all goes OK!
 
Laura
 
 
Mom to Hailey(age 9)....she was just diagnosed with ulcerative colitis mid Feb 2008
Currently on 500mg pentasa 3x/day, 15mg prednisolone 2x/day, and 25mg 6mp 1x/day which was started Mar 6th


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 3/28/2008 10:32 PM (GMT -6)   
Laura, I was searching old posts and came across this one. How is Hailey doing? I hope well and enjoying school again!

--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 176
   Posted 3/29/2008 10:56 PM (GMT -6)   
here are a couple suggestions: ask for her to be able ton
have a permanent anytime use restroom pass. Just make sure her teachers know about her condition. Mine were always understanding even when I was already in remission. Also, my school let's us have water bottles, but if hers doesn't that might be something to ask for because of dry mouth from medicine. I hope everything goes well.
Age 17
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)


ljf01
New Member


Date Joined Feb 2008
Total Posts : 18
   Posted 4/1/2008 9:41 PM (GMT -6)   
Bennie,
 
Thanks for checking in. We just got back form 11 days in Arizona. Hailey is so-so. She got a double ear infection while away and then had to be put on antibiotic. After a few days, she began having symptoms like bloody D, a little cramping. Also, about that time they started weaning her off of prednisone. We saw the gi today and he feels it is the antibiotic and not the taper. She is now off the antibiotic and on a probiotic per the doctors instructions...something called florastor. As far as school goes, she really had only been back 1 week and then it was spring break. We did get the 504 plan in place and school has been really accomodating with everything.
 
How are things on your end? How is the 6mp working for your daughter?
 
Laura
 
 
Mom to Hailey(age 9)....she was just diagnosed with ulcerative colitis mid Feb 2008
Currently on 500mg pentasa 3x/day, 15mg prednisolone 2x/day, and 25mg 6mp 1x/day which was started Mar 6th

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