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  1. #1
    ICN Founder icnmgrjill's Avatar
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    Back To School Strategies for Students With IC

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    (By Jill Osborne) With a new school year fast approaching, children and teens with IC might be anxious and uncertain. Will they be given restroom access? Will they have teachers who support them? Will they make new friends and fit in? Will the bus ride be comfortable? Your goal as a parent is to nurture and inspire them. School should be a source of happiness, dignity and pride. IC, however, can create obstacles, particularly with restroom access.

    Unsupervised restrooms are a safety and school liability issue everywhere. ICN Support Leader Jennifer, a high school teacher in California, said “While teachers and schools are not intentionally hostile towards children with documented medical conditions, they may be worried about the security of students who roam the hallways alone.” In Jennifer’s school, she’s not allowed to let students use the restroom in the first and the last ten minutes of each class. Students who request to use the restroom during class are told that they must serve a 15 minute detention, usually during lunch or after school. This deters those students who are trying to get out of class to commit problems on campus, but it also penalizes students who legitimately need to use the restroom.

    One logical advocate for a child with IC is the school nurse, who often has a restroom available in the nursing office. But, as Jennifer pointed out, nurses are now rarely seen on campus. In her school, there is no nursing office. Five nurses serve a school district of 50,000 students and are rarely seen on campus. If no nurse is available, can a student with IC use the restroom in the school office? In Jennifer’s school, the answer was “No because that bathroom had also been vandalized.”

    Given this difficult environment, a young IC patient can feel very vulnerable, embarrassed and alone. One ICN member shared that she dropped out of high school in her junior year because she was not allowed to use the restroom often enough and often struggled with severe pain in the classroom. She did, however, eventually graduate.

    Thus, we’ve put our heads together to come up with some tips that you can use to advocate for your child with school administrators, personnel and teachers. Here are some ideas:

    Getting To and From School

    IC patients of all ages report that bus rides can trigger bladder symptoms. Why? It’s usually due to the stiff, jarring and bouncy suspension. In fact, we’ve worked with a number of school bus drivers with IC who also experienced discomfort.

    The length of the bus ride is also important. If it’s longer than 30 minutes and your child needs to use the restroom that often, it might be very difficult and uncomfortable for them. Being driven to school in a car that has a smoother ride and could stop for the bathroom would be more sen- sitive to your child’s needs.

    If the school bus is your only option, it may be helpful if your child sits in the first half of the bus, which tends to bounce less than the last half of the bus. Fair warning – if your child is having a moderate or severe IC flare, a school bus ride could aggravate their bladder symptoms and/or pain dramatically.
    Be sensitive to that.

    Kindergarten & Elementary School Students

    1. Before school starts, request a brief joint meeting with the school principal or nurse, if available. Explain that your child has interstitial cystitis and will require, on occasion, immediate restroom access. Bring some articles on IC to share. You can find several on our website at: http://www.ic-network.com/professionals/cme.html

    2. Ask the principal and/or nurse to educate other school staff, aides and teachers so that if your child is visiting in another classroom or the library, they can seek restroom access without embarrassment.

    3. Before school starts or in the first few days, request a parent-teacher conference. Emphasize that a child with interstitial cystitis is not just seeking attention or asking for special privileges. An IC patient has an immediate and urgent need to use the restroom due to irritation, inflammation and/or ulcers in their bladder. The longer the delay, the more irritation and discomfort the student will experience, including potentially severe pain. Asking a student to wait even five minutes for recess can be very uncomfortable.

    4. Ask the teacher to create a non-embarassing way for your child to ask for restroom access. It might be as simple as holding up a book, a pencil or standing by the door. Forcing the child to ask to use the restroom in front of the other stu- dents can be very embarassing.

    5. Ask the teacher to leave a note for any substitute teachers about your child’s need for immediate rest- room access.

    6. Advise the teacher that physical education might be challenging for your child if they are having a bad bladder day. Running and jumping could trigger more discomfort and, for some children, leakage. On those days, ask the teacher to give your child a supportive role, like ball monitor, so that your child can stillbe involved and included.

    7. Encourage the teacher to report back to you any unusual symptoms, such as a dramatic increase in restroom requests so that you can monitor your childs symptoms and behavior.

    8. The first day of school often produces anxiety for new students, especially if they have a special need. Before classes start, talk with your child about school. Emphasize how fun it can be and how nice it is to make new friends. Remind them that their teachers can be helpful and should always be treated with respect.

    9. If possible, introduce your child to the teacher before school starts so that the three of you can talk about restroom access and any other concerns that your child may have.

    10. Remind your child that IC is not their fault and that they have done nothing wrong. Acknowledge the fact that it might be embarrassing to them and seek ways to reduce that embarrassment. Let them know that it is okay to ask to use the restroom as often as they need to. Let them know that school nurse and/or office can help them if they are feeling poorly. There is no shame nor blame in having a bladder with an “owie.”

    11. For after school activities such as Scouting, 4-H or sports, take a moment and pull the leader or coach aside to explain IC and that your child will need restroom access. Remind them that asking your child to “hold it” can result in more severe symptoms and possibly pain. Ask for their support and for dignity for your child.

    Middle School and Teens With IC

    A teenager’s life is often filled with drama and difficult lessons learned. Throw in the trials and tribulations of puberty AND IC, teens can be a source of great puzzlement and/or concern to their parents. Try to remember that teens are easily embarrassed if not mortified when parents get involved with school. Be discreet when working with school staff and be sensitive to the vulnerable feelings that your teen may have.

    Because most middle and high schools have several classes throughout the day, many students find it much easier to adapt, that is if the restrooms are open. Classes are usually about an hour long, thus providing good opportunities to use the facilities. However, some schools use the “block system” that can have classes up to two hours long that can certainly be a problem for both students and teachers with IC.

    Your first stop should be with the school administration, preferably the principal or vice principal. Bring a letter or note from your doctor or pediatrician explaining that your teen may require frequent and immediate restroom access. One ICN Support Group Leader LeeLee suggested having the principal sign it, then photocopy it for any school staff and teachers. Give a copy to your teen to carry in their backpack so that it can be produced when necessary.

    Bring some educational articles on IC to help educate staff about urological disorders. We have some excellent professional articles on our website (http://www.ic-network.com/professionals/cme.html ) that are perfect for educating others about IC. The odds are there may be at least one other student or staff member with IC who may benefit from this information.

    Ask the principal how you and she/he can raise awareness with both teachers and personnel so that your teen’s dignity is maintained and not made to feel embarrassed by asking to use the restroom.

    Ask for an introduction to the school nurse if there is one on campus. Ask what the school’s policies are for medical outreach. Can your student come to the nursing or school office to use their restroom?? Can your student ask the nurse, school counselor or principal to advocate for them if there is a prob- lem with a staff member??

    Most schools will not allow medications on campus. So, if your teen regularly uses a medication during the day, how does the nurse or office staff distribute it?

    Gym and PE classes are vital to your teen’s physical and mental well being. Exercise is important for a growing teenager and there are many exercises that may not irritate the bladder, such as: swimming, softball, bowling, golf, dancing, ballet, badminton and tennis.

    During IC flares some exercises can be uncomfortable. You’ll probably want to talk with the head of the PE department and ask about options. If your teen is having a bad day, can they have a different role (i.e. umpire) or can they avoid the exercises which jar the bladder (i.e. running, jumping etc.)?? Maybe your teen can help in the gym office or supply room on those days? A fun job on campus is being a “stats” keeper for the basketball or football team. Why not?

    School Field Trips

    If your child or teen is going on a field trip, make sure that you ask for accommodation for their restroom access. Yes, it can be very embarrassing for the school bus to stop for one student but it can work. Better yet, most schools now have parents who drive children in their family cars. This is ideal for your child. If you have any field trips coming up, you may want to consider offering to be a driver to help make restroom access easier. Your child will greatly appreciate your help.

    Absences From School

    IC is characterized by periods of remission and flare. Obviously on days when your child is feeling well or having mild symptoms, school is a must. The great thing about school is that it’s often so distracting, your child may not even notice their bladder problems.

    But when symptoms are moderate to severe, it’s important to listen to your child. If they’ve been up that night, unable to sleep, and their bladder symptoms are upsetting them, it might be reasonable to ask if they can do a half day? If a half day seems too much, a day at home might be necessary.
    Fair warning. Schools and school districts may have different policies about absences. Some school atten- dance computer systems will auto- matically dock course credits after a certain number of periods are missed. Some schools also require a doctor's note for each absence after a certain number of absences. These issues will need to be addressed with the school administration preferably before any negative consequence is given to your child.

    Remember that many flares are caused by diet. By following the IC dietary guidelines, you might be able to reduce absences dramatically.

    Home Instruction

    Home instruction is made available by schools to selected students. Jennifer offered “A student who is missing classes frequently may need to
    make arrangements for home instruction, in which a teacher is assigned by the school district to meet with the student at home and act as liaison with the school. The home instruction teacher will usually confer with the student’s regular instructors to best assist the stu- dent in keeping up with course requirements.”


    Assess School Progress Periodically

    A few days or weeks after school begins and throughout the year, ask your child how school is going.
    • Is anyone giving them a hard time about using the restroom??
    • Are they being teased??
    • Is the bus ride comfortable?
    • Is there a time of day when their symptoms seem better or worse?
    • Do they feel that their bladder symptoms are getting better or worse?
    • Is there anything about school that they would change?
    • Are they socializing and making friends?
    • Are they involved in afterschool programs?
    • Are their grades good??
    • Most of all, are they smiling and happy after school?

    Living with IC as a child or teen can feel overwhelming but with the unconditional support of family friends, it can be much much easier. Dare your child to dream. There are space scientists living with IC, actors, actresses, judges, attorneys, teachers, nurses and doctors. IC doesn’t mean that they can’t have an amazing career or a wonderful family of their own.
    As their parents, it’s your job to nurture them, hug them, push them when needed and give them a soft place to fall when they are in pain. Working together, you can get through this. There is always great hope!!
    Did we miss anything?? Do you have any more suggestions or ideas for other parents?? Please share your story here or send me an email at: jill@ic-net- work.com.
    Last edited by icnmgrjill; 08-26-2010 at 08:33 AM.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  2. #2
    ICN Member
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    Good tips Jill !

    I'm 17, and I've had IC since I was 15, so I've spent my Sophomore and Junior year with it, and am entering my Senior year of High School with IC in a few weeks. In my school, I have an "all-access" bathroom pass is what I call it. I can get out of class at anytime to use the bathrooms, out of any class, no questions asked. Like at Jennifer's school, you can't use the bathrooms during the first and last 10 minutes. If I have to go when that applies, I am allowed to use the faculty bathrooms or the nurses bathroom, no questions asked.
    I took the bus Freshman through Junior year ( I'm driving this year ! When I drive, it doesn't aggravate my bladder. ) and I know from personal experiences that the bus always, every day, without fail, made my symptoms worse, but those symptoms would usually disappear within my first period class.
    For gym class, ( you mentioned leakage which is a major problem for me ), I usually opt out of running ( I get a note from my Urologist ) and usually pick Yoga or vollyball / badmitten classes.
    And, I aspire to be a nurse, yay :P

    Hm, that's all I can think of to contribute right now, lol.
    Diagnosed;
    IC; Early November 2008, age 15 by hydro/cysto
    IBS; May 2010

    Current Treatments;
    Elmiron - 2 pills twice a day, started on 8/11/09.
    Cystoprotek - when I remember, not usual.


    she's seventeen and a beauty queen <3

  3. #3
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    Hi Jill,

    There is also a law in place that prohibits any school district from denying a student with a medical disability, what their rights. It is called a "504 Plan" which stems from the Rehabilitation Act of 1973.
    Most of the time, we hear about students with ADD/HD who need certain accommodations, but there are also students with Diabetes who need certain accommodations. It stands to reason, that student suffering with IC, would also be eligible for a 504 Plan. It is a legal document, and every faculty member must be in compliance with the plan. Unfortunately, there will always be that one teacher, or aide, or uninformed lunch attendant that doesn't want to allow the student his/her rights. Having this documentation will help a great deal!!!
    I would recommend asking to speak with the school district's 504 Compliance officer, and if they give you a blank stare - start doing your homework!! It could be that it's just that it's all done through the Special Education office, but if not, it is incumbant upon the parent/guardian to seek assistance to ensure the rights of their child!

    Maureen Morgan
    (former teacher, special education advocate, and IC patient)

  4. #4
    Support Leader kadi's Avatar
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    I'm also a teacher & I agree that a 504 plan is a good way to manage this issue. What Maureen wrote is very true & very clear. I don't have anything to add except that it's a great idea!
    Kadi

    -------------------------------------------------------------
    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  5. #5
    ICN Member
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    I am going to chime in with the others who suggest a 504 plan. Please please add that to your main list. It is essential for a student with IC to have one in my book. Before starting a new school ask to have a meeting to discuss a 504 plan for medical reasons. This is in my mind, the best way to ensure compliance with needs. Done along with the other suggestions.

    (I work in special education)
    Currently dealing with IC (diagnosed May 2001), Fibromyalgia (January 2000) and ADHD (1998 sometime) and vulvodynia (Jan. 08)

    I work in the schools helping students with disabilities. I am a speech language pathologist working as an Assistive Technology Specialist. A very do-able job with IC.

    Medications

    Meds that I take:
    Elmiron 2 x day ; Effexor XR 37.5 ; Ritalin;
    Nasonex; Atarax 10 mg (night); Lidocaine 5%; monthly B-12 shots; Pyridium as needed

    Meds I am trying
    Urell

    Supplements that help:

    Condroitin Sulfate; Calcium Citrate; Magnesium Glycinate; Olive Leaf Extract; daily probiotic

    Other treatments that help:
    Physical Therapy for PFD; Massage for Fibro; Chiropractic for Fibro; IF Unit (like a tens unit) for pain

  6. #6
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    SAT and GREs

    Just to let you all know who might be dreading to take the GRE or SAT, I went through EST disability services and got permission to stop the test ( I took the electronic version) whenever i needed to leave for a bathroom break. It was a little annoying because they limited the amount of time you could pause the test for but it wasn't that grooling to get approval for: I just needed to fill out a little paperwork and have a Doctors note. But I can tell you my GRE score hit way up after I did this. The first time I took it I didn't have the option to pause the test. It is a lot easier to concentrate when you aren't in pain---- as we all know!

    Lori

  7. #7
    ICN Member marie_'s Avatar
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    i had to drop out of high school at the very beginning of my sophomore year after a grueling freshman year where i was mostly absent. (my symptoms began in 6th grade, but they got progressively worse and then i received my diagnosis last year). i'm currently doing homeschooling.
    my teachers were unsympathetic about my IC, would not let me use the restroom, and with new rules that began during my sophomore year that prohibited me from even leaving class to call my mom (which i NEED to do when my pain gets severe and i need medication or to go home), i realized i couldn't really stay in school like that.

  8. #8
    ICN Member ICNLesa's Avatar
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    I agree completely with establishing a 504 Plan for children. It means two very important things... 1. Your child can never be excluded from participating in a federally funded program (eg public school) because of her/his IC, and 2. It establishes any accommodations your child may require in order to perform at the same level as his/her peers. It will also help reduce the possibility of punishment or poor marks as a result of misunderstandings regarding the child's needs or behaviors.

    504 Plans are fairly easy to establish. Step 1, meet with the school for the paperwork. Step 2, have the paperwork completed by your child's physician. Step 3, return to the school to discuss what accommodations would most meet your child's needs. Done!

    Let me add that the 504 Plan pertains to the Americans with Disabilities Act....so it's within the U.S. law.
    Last edited by ICNLesa; 12-14-2011 at 10:18 AM. Reason: (add info)
    "The first time her laughter unfurled it's wings into the wind....
    We knew that the world would never be the same."
    ~Brian Andres

    Baby Kaitlyn was born on 07/08/01 after a successful pregnancy with IC!

  9. #9
    ICN Member nekura's Avatar
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    As noted in the Zombie Survival Guide, schools are being fashioned more and more to be akin to prisons (which makes them a good place to fortify..in case of zombies..). Hardly any windows, stricter rules every year... so glad I graduated when I did. IC for me didn't get "real" until college..

    Let you kids know that college is WAY better for IC than school. Most your time is at home studying, you can leave whenever you want, and the professors are all understanding, especially if you talk to them about. Them being a professor usually means they'll be very interested in your story. In fact, my 89 year old poetry teacher said his mom had IC too. I'm often the last to leave class but I always chat one-on-one with the professor while packing up, usually random things.

    That said, like everyone else, meet the administration.. ask to meet the teachers before hand.. and its such a pity kids are being treated like criminals these days.. In turn, it may actually send them in that direction. I did get out of detention once when my mom said something was wrong with my bladder. I wasn't diagnosed and it usually wasn't bad, but just her saying that got me out of detention.. that plus I was a straight A student anyway. Though, I was trying to get rid of acne for most the bathroom trip.. but eh, sometimes I did get spasms for a few minutes after then they'd go away.

    I hear the GED isn't a big deal versus a degree. My mom and friends went that route.. mom had been pregnant at 16, friends were just.. uh.. "bad kids".

    And finally, my plan for next semester is a battery operated heating pad and a wheel chair since sometimes walking causes triggers. The biggest advantage sadly is that you LOOK sick so will be treated fairly. Plus you get to hide the heating pad wherever you need it.. not to mention those school desks and how hard the damn things are. A reclining, cushiony wheel chair with a heating pad? Yes please. You can also hide a donut pillow under you without anyone noticing, just always wear a snuggie over you or something.
    • 27 year old student
    • Had symptoms since I was 5
    • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
    • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
    • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
    • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


    Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

    What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

    What didn't work: Elavil, vistaril (12/22)

  10. #10
    ICN Member manxldy's Avatar
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    gym / pe

    Another route for p.e. or gym is having the principal sign off on a yoga or dance class. I did that back in the mid nineties.

  11. #11
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    Thanks a lot for providing such nice tips. I'll keep them in mind.

  12. #12
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    Re: Back To School Strategies for Students With IC

    This would have been wonderful advice if it was given when I was a kid. I have had IC my whole life, but was not diagnosed until 2010 when I was 20. Not that this still isn't wonderful advice that is to say. I just wish I has this advice when I was a kid....sigh

  13. #13
    ICN Member jvr's Avatar
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    Re: Back To School Strategies for Students With IC

    Another great post Jill:-). You are so very helpful. I'm working on getting my daughter a 504 plan for school. This gives me some more ideas to consider. Thank you!!! :-)

  14. #14
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    Re: Back To School Strategies for Students With IC

    I was 6 years old when the 504 plan came out. I had symptoms of IC when I was 5 years old. My mother thought I was lying and she didnt validate me. I had to pee in the attic and the woods to hide my flares. My mother only urinated twice a day and she hated me. I couldnt understand why God made such a misfit in me. This information you provided is great however, even with the blessing of this information, we still face abuse and discrimation in our society. Many still dont believe, including doctors.
    Last edited by ICNDonna; 06-25-2017 at 04:58 AM.

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