Newly Diagnosed...how To Handle School

[Sierra's Mommy]

Hello:

We just received confirmation that our 1st grader has Celiac. I have kept her out of school the previous week, due to her discomfort and multiple bouts with diarrhea every day. We have taken away the gluten, and she is now averaging about three loose stools a day, however our school has a policy that if a child has "diarrhea", they can't be in school.

I am learning that it may be several weeks before she has regular stools, now that we are modifying her diet. Does anyone have any experience in working with schools to accommodate their child's special bathroom needs. I'd like to see her have access to a bathroom at all times, and if possible, wipes, since it is very hard for a 6 year old to properly clean herself. I am not going to keep her home until she is completely healed!

Any advice or wisdom gleaned from this experience would be greatly appreciated. Also, what other arrangements, outside of a snack list and special snack supply, should I provide to the school?

Thanks!

~Sierra's Mommy

[Darn210]

I'd work with the school nurse and your daughter's teacher and let them know what kind of symptoms that your daughter experiences along with some general information about Celiac disease. They should let her back in to school even with her three loose stools a day . . . they are truly only concerned about a child being contageous. They may or may not require a note from the doctor to put in her record that she has celiac disease. Does she makes it to the bathroom OK (in time?) as long as she has free access?? When my son had bladder spasms and would have to go "right now", we had worked it out that he left the room whenever he needed and gave the bathroom sign (at our school it's the letter "R" in sign language) as he was walking out so the teacher knew where he was headed. I have not had a problem with any of my kid's teachers on accommadations such as these . . . it just took a couple of emails to set the plan in place. The teacher's then forwarded to anyone else that might need to know (the art teacher, the PE teacher). If there is the posibility of an accident, I would see if you could keep a set of clean clothes there for her . . . possibly in the nurses offices (that's who's responsible at our school for cleaning up the kids in case of accidents). I'm not sure how to make wipes available to her where she has them when she needs them but are safe from other kids using them up (or messing around with them and wasting them is what I really see). Do they have the flushable ones in travel packs that she could keep in her desk and take with her? It might be embarrassing to her to have to take a "tub o'wipes".

Our school doesn't allow kids to bring in snacks/birthday treats to share. However, there are a few times when food is passed out by a teacher (goldfish, pretzels, etc) and that's when my daughter will get something out of her emergency snack pack (kept by the teacher). For school parties (there are only two a year, Christmas and Valentines Day), I get in touch with the room mom and find out what is being served and send in the gluten-free equivalent for my daughter.

We, of course, pack a lunch every day.

[sugarsue]

Hello:

We just received confirmation that our 1st grader has Celiac. I have kept her out of school the previous week, due to her discomfort and multiple bouts with diarrhea every day. We have taken away the gluten, and she is now averaging about three loose stools a day, however our school has a policy that if a child has "diarrhea", they can't be in school.

I am learning that it may be several weeks before she has regular stools, now that we are modifying her diet. Does anyone have any experience in working with schools to accommodate their child's special bathroom needs. I'd like to see her have access to a bathroom at all times, and if possible, wipes, since it is very hard for a 6 year old to properly clean herself. I am not going to keep her home until she is completely healed!

Any advice or wisdom gleaned from this experience would be greatly appreciated. Also, what other arrangements, outside of a snack list and special snack supply, should I provide to the school?

Thanks!

~Sierra's Mommy

Our school district gives us the monthly school lunch with all the gluten and dairy options crossed off so we can see what my girls can eat. If there is not an option for them that day, they will always have ham or turkey for them in the event that they want to buy their lunch. Luckily for me, they usually would rather bring (it probably makes them feel more comfortable that they won't get sick) and they have their one day a week that they enjoy the food and buy at school.

I have been lucky that my 6 yr old that has the bowel issues usually only had one big D a day and if at school, usually only kept her in the bathroom for a long time but didn't cause any other issues. It sounds like you are on the right track with your daughter. Once she is having normal functions, there will still be days when she has issues so it's good that the school is aware.

One piece of advice that I think I got from this board by someone was to offer a treat exchange so that if any child or teacher offers snacks or candy, my daughter can accept it and bring it home. I will exchange it out for something better or offer 2 candies in place of 1 to encourage her to check it all out with me. Now she knows the few things she can eat without asking, but in general, she still asks about everything. She knows it's not worth the mistake.

HUGS!

Susan

[SGWhiskers]

This is how a kindergarten classroom was handled in a school I worked at. Only snacks on a designated list were allowed to be brought to school by anyone in the class. The celiac parent provided more than her fair share of snacks, so did the teacher (remember teaches do this out of their own pocket), and other parents volunteered to send in boxes off the designated list. The teacher was very sympathetic and strict about the rules. No playdough or craft items with gluten were allowed. A 504 plan was written with the school nurse, social worker, teacher and principal. The child did something else during art class (double gym or something) and all was well. A letter was sent to all parents. A sign was posted outside the classroom door. The classroom door with a window was kept locked because of a custody issue with another child, but it also helped the celiac child because the teacher could stop anyone from unknowingly bringing anything through the door.

The school also had an allergy table in the lunchroom that all the kids with pb sandwiches sat at (or was it the reverse). Anyway, there was a lunch monitor who sat at that table for most of the lunch. She was in charge of the 2 kids with autism and of the kids on 504 plans. Most of them did not sit at her table after the first month or so of school, but she was there to help all of them have successful lunch periods.

We also had a kid with extreme pb allergies one year and one of his parents came to school every day for the first several weeks and sat with their kindergartener or at the same table. The dad was cool and the kids just considered him another lunch room monitor because he opened all the milk and katsup packs too. Dad was able to help train his son in the new environment and to make sure the school was engaging in safe practices.

I think all of this was successful for these kids because we had a great principal and the kids were placed with teachers who would meet thier needs. Other principals I've had wouldn't have been so good, and the kid's safety would probably have been compromised at least some.

[happygirl]

The Gluten Intolerance Group has two very good documents that may be helpful to you and the school:

Open Original Shared Link (under "gluten free children")

[ek327]

I have a 2nd grader who is doing great in school. She was diagnosed this summer (June) by biopsy after positive antibodies in the spring (late april). At the beginning of the school year, I took in a handout for teachers on celiac disease. I worked with the administration of the school to allow Emma to bring her own snacks (the school has a pre-set list fo allowable snacks due to peanut allergies). Anytime the class is having snacks, or doing projects with food, the teacher emails me and I make sure that emma has a gluten free equivalent. (they made turkeys out of rice crispy balls, frosting and oreos--we made all of the crispy balls gluten free, and emma had her k-toos instead of oreos. the frosting was gluten free). We do pack her lunch every day--but she likes that, anyway.

She luckily never had the diarrhea--hers was the opposite problem.

good luck. be open with the teacher and administration. use the school nurse.

janet

[Amyleigh0007]

I can offer advice as both a parent of a young child with Celiac and a first grade teacher. First, I will speak as a parent.

I gave my son's teacher some emergency candy in case of unexpected birthday treats. He loves Hershey bars so I gave his teacher a 6 pack. I also stuck a box of Amy's frozen gluten free mac and cheese in the freezer in the teacher's workroom. That way if he forgets his lunch or something would happen to it, he will always have a safe, hot lunch available. I wrote a simple yet thorough explanation of Celiac and distributed it to all his teachers including the Principal, secretary, and all special area teachers (art, music, etc.). It explains what Celiac is, symptoms, and foods and craft items he should avoid. I also stressed that it is very important that they let me know if he does come in contact with gluten and let me know in advance of any parties or rewards that involve food. I had a meeting with the school nurse and gave her more complex information about Celiac.

Speaking as a first grade teacher, you must have a meeting with your daughter's teacher (if you haven't already). If a student in my class was diagnosed with Celiac (and I was not familiar with the disease) in the middle of the school year I would want to know what changes need to take place in the classroom. Also keep in mind that in the lower grades we use cereal and pasta as manipulatives in math. We use them in sorting, graphing, addition, and subtraction. I would supply the teacher with gluten free cereal and pasta. Also keep in mind that some art supplies contain gluten and the classroom teacher and art teacher need to know which supplies are not safe. You will probably need a note from the doctor if the school is strict about bathroom use. A note from the doctor will probably make the school staff take Celiac more seriously too. I am lucky because I teach in the same school my son attends so they all know the hell I have been through the past few years with his health. They have seen him at his worst and they now see what a miracle a gluten free diet has been for him. There was no doctor's note needed for them to take Celiac disease seriously. Good luck!

[luvthelake21]

lso remember Celiac falls under the ADA.

[dilettantesteph]

The celiac sprue association has helpful information.

Open Original Shared Link

The first school my son went to was terrible. Once they handed out crackers during a demonstration in class and they wouldn't let my son leave, and then wouldn't let him wash up afterwards. Then when he got glutened and had to miss school the principal threatened me with social services for not sending my vomiting kid in anyways. This was after a meeting with him and my sons teachers, giving him all sorts of stuff from the doctor about how he has to be able to wash up and avoid gluten etc. The dope was still convinced that it was school phobia, diagnosed by their incompetent social worker. I sent him a bunch more stuff from the doctor, and wrote the school superintendent. That helped.

He changed schools the next year, this year, and they have been really good. The teachers tell me if they are handing out treats in class so that they can get something gluten free for my son etc.

I hope things go well with you and your child.