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Kids In Elementary School

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My 6-year-old daughter just had a positive blood test for celiac (she has the genes and the antibodies). We haven't scheduled the biopsy yet but want to do it as soon as possible. In the meantime I'm trying to figure everything out.

For those of you who have kids in elementary school, what kind of accommodations did you need to ask the school to make? I know one member here (sorry, I forget the name -- the person who did the "Good news" post) mentioned gluten-free art supplies. Is that always necessary, or would it be worth waiting a few months and seeing if art supplies are actually a problem?

Did you have a meeting with the principal, counselor, nurse, cafeteria director, etc.? How did you initiate that? Did your child need someone to supervise his/her lunch and snacks (to prevent sharing/touching), or do you think a 6yo is capable of following the rules on her own?

I think I'm struggling with the idea of being That Parent. I have always been shy, not wanting to make waves or attract attention or be a pain in the neck to anybody (and my kids are very similar). I know I will need to be more of a mama bear now to keep my child safe... Any words of advice?

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Of course it depends on your child and it depends on your school...

My daughter was 6 when she was diagnosed. She was at the tail end of Kindergarten. She was not afraid to talk to adults and she picked up the do's and don'ts pretty quickly.

I initially talked to the school nurse (a letter from the doctor was added to her file). The school nurse has her on her 'allergy kids' list. She calls just prior to the school parties (one at Christmas time and one at Valentines) to remind me that my daughter will need her own safe cookie that day.

In the beginning, I sent her teacher an email each year just giving a small amount of info. I also sent in an "emergency snack pack" that the teacher would keep with items like tootsie pops, smarties, skittles, lunch-size bags of fritos. Then if something came up where all the other children were getting some kind of treat, my daughter would get something from her bag.

She would take her lunch everyday and she knew that she couldn't trade items. I would also talk to her about people touching her food. I don't recall now, but I probably talked to a few of the lunch monitors to just keep an eye on her but she did fine in the lunch room.

The kids didn't have much in the class room in the way of art supplies. There was only one time that the kids (in third grade) were doing a project and everyone was suppose to bring in playdoh to work with. I supplied the class with Crayola modeling clay instead.

From the get go, we discussed safe, normal-kid-looking options that she could have when she was at school or with friends. I had her reading labels early (she's not perfect at it, but she's going to have to do it sooner or later), and I have her order at restaraunts (under my watchful eye).

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Thank you OP for posting what has been on my mind for about two weeks now. My DD tested postive through blood work and we are going in for the scope on the 11 of April. My concern are what supplies have gluten in them and how will I know and if the school will take me serious? I have keep them update to date regarding her testing postive for celiac and I got the "ok,so she doesn't eat wheat" I am also concern about when they ate lunches that the other kids' crumbs will get on my DD's side of the table. I don't think that they wash the tables after lunch unless there is a spill. Anyway, I am sorry to hi jack the OP's post, just feeling the same concerns as her.

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zapsmom, there is a ton of info here about how to deal with the school:

http://www.csaceliacs.info/parent.jsp

(There are also pages you can print out and give to the principal, teachers, nurse, etc.)

It completely overwhelmed me, which is really why I posted -- I'm wondering if it's necessary to go to that extent. But, on the other hand, if you're feeling like the school isn't taking you seriously, having something like that to give them might be really helpful.

Janet, thanks for your response!

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My son was diagnosed in Kindergarten. He is very good about speaking up.

Here's some of the steps I took:

Get the doctor's note on file with the school right away. That way, if you have any problems with them following your directions, you can take action. Our school was great and just wanted to learn about it and how to keep him safe.

Met with his teachers (there are 4 in his class) and went over everything. Luckily, the assistant in the room had a son with sever food allergies so she was all over it. She happened to be the one to supervise lunch, so she watched him like a hawk.

Sent in a two page overview of celiac and how to be safe . . . mainly for the student-teachers that might change during the year. Main rules: 1: Only eat food that we have sent in (or call me to check) and 2: wash hands with soap and running water (not sanitizing wipes) before eating anything.

Sent in a box with snacks and treats - for unexpected times when they might serve food. Also put 2 frozen cupcakes in the teacher's lounge freezer (from Whole Foods) for classroom birthday parties. It the teacher takes it out 1/2 hour before the party it is completely thawed. We also keep a shelf-stable lunch in his class for an "emergency" (hummus packets, crackers, dried fruit, juice box, lara bar) Had to use it once when he left his lunchbox on the bus. Glad it was there.

Got some packable placemats (pack-n-wrap? something like that) from Amazon for him to eat on. They do wipe down the tables between classes, but I'm sure the rag they use is full of crumbs. He knows to keep all his food on the placemat.

I replaced all our plastic food storage containers and bought new stainless steel ones for his lunch - so we don't confuse them with my other son's lunch stuff. We got Lunchbots containers from Amazon and they are great. He can just take off the lid and his whole lunch is there, doesn't need to put anything on the table.

His teacher doesn't use playdoh so that wasn't a problem. So far, the only project they have done is Gingerbread Houses (with graham crackers) . . . I just brought in gluten-free graham crackers for him and we kept his candy separate from everyone else so no one with crumbs on their hands was near his house.

This year he has the same teacher (1st grade) and the only other child in the school with celiac was moved to his class. Not sure if that was intentional, but it worked out great.

As he gets older it will get more difficult. The 4th grade goes on a trip to NYC and the 5th grade does a week in Maine at some beach for environmental education. I am already stressing about how we will handle that . . .

Cara

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Thank you Cara, very helpful! I'll definitely check out the placemats -- and we had been meaning to buy her some special containers, so it's good to have a recommendation.

I hope there is another child with celiac in the school. It's a big school (500 kids), so given the statistics, it seems like there should be.... This is also an area where, I would guess, kids are more likely to be diagnosed (parents very informed about allergy issues).

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My daughter was diagnosed at the beginning of Year 2. The art supplies are safe anyway, and kids only eat from their lunch box. They have a nut-free policy, check lunch boxes, and monitor eating times. Kids are not to share. There is a notice board at the office and tuck shop of all dietary restrictions, contact numbers, and a photo of the child. The teachers have them on the wall of kids in their own class.

We have been lucky, her teachers last year did all the research when we did, and there was a lot of information sharing. This year, her teacher is just back after having kids and I knew her as a parent from Prep to Year 2 before she was my child's teacher. She knew what we went through last year so it has all gone smoothly.

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Just wanted to add:

Don't count on other adults to be able to really read labels correctly and know all the different things to look for. We had a problem with a camp counselor (actually it was the Director). A parent brought in a special snack (graham crackers) and was handing them out to the kids. My son told (reminded?) the director he couldn't eat gluten and asked her to check the crackers. She read all the ingredients and since GLUTEN wasn't listed, she assured him they were safe and he could have them. She tried, but just didn't know that wheat has gluten in it. This seems like a reasonable mistake (most people are really uninformed when it comes to food ingredients) and I can only guess that finding "hidden" gluten would be almost impossible for someone who doesn't do it daily.

Anyway, that is when we switched to "only food from home or call mom to check first" No exceptions.

As he gets older, he can read the labels himself. His brother (9) is already very good at it. Call's himself "Joe's Gluten Guard".

Cara

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A little something that will make school easier:

"Is Elmer's glue gluten free?

All of our products are gluten free except for the Elmer's Finger Paints. The finger paints contain wheat and oat products."

http://www.elmers.com/about/faqs

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Hi - I'm the "good news" poster.

WHen my child was diagnosed, I didn't know any better and the first year was a learning experience. Once my daughter moved up to elementary school (k-1 is in a seperate building), the vice prinicipal is the one who actually approached me about the 504plan - which I know from others probably never happens. So onece you get a diagnosis from the gastro, you will need it in writing saying your kid has celiac, must eat gluten free, not be exposed to any gluten products. The reason I say that is they need to make accomodations for classroom activities such as cooking, science and art where there could be exposure to gluten as well as precautions in the cafeteria. I would not suggest buying lunch until you learn as much as possible and feel comfortable with it (took me 3 years). Luckily, my daughter's art teacher has a daughter with celiac (we've become friendly) so she ordered gluten-free art supplies for my daughter before we even had the 504 plan. But the 504 plan is necessary to cover the costs.

In order to get the 504, we sat down at a meeting with the VP, school nurse, teacher. We do this yearly. 1/2 way through the year I wanted to start my daughter on buying lunch and sat down with the VP, nurse, food manager for the district and manager of the cafeteria for my school. I refused to let her eat what everyone else was having because of contamination issues (i.e. a burger without a bun). So they make her a gluten free equivelent. We've only done gluten-free nuggetts and gluten-free waffles about twice a month. Thats enough for her and me. Next year we will get it incorporated into her 504 plan.

As far as responsibility goes. My daughter was about 6 when this started. In the beginning of school I came in and we did a presentation on celiac and what is gluten free, why no one can touch her food, etc.. She was fine until this year (3rd) when an idiot classmate kept sticking her hands into my daughters chips and touching her drink. It was solved by moving the girl to another table as she just wouldn't stop no matter how many times she was told. Most kids are OK with it, but you need to teach your child the importance of contamination. I probably overdid it and my daughter is really scared of contamination, but better to be safe than sorry.

My daughter actually has a kid in her class for the past 2 years with celiac. I have a talk with the teachers ahead of time and they keep gluten-free snack (I provide) for parties/treats. They send home notes listing the ingredients in any science experiements, etc..

I have to say, my school district has been amazingly accommedating. We'll see what happens as she moves up and has Home ec and chemistry, but for now, they have been great. Please feel free to email me with any more questions as I don't come on the forum too often (busy with work).

Good luck!

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