[sleepingbean]

Well, we have been having some trouble with our first year in public school when it comes to gluten. There have been at least 5 instances where the teacher and or associate has forgotten and handed Bean a gluten snack to eat and / or gluten craft to play with.

Now I have sat down with her main teacher and principal to explain her illness, I have talked to the nurse, I have sent in written letter, I check in OFTEN, and I bring all her food and snacks daily. If I see someone has a birthday, I automatically bring a GF cupcake. I ask about what I can bring in for in class activities and I make the classroom playdoh. Still, there have been at LEAST 5 occurances of her being given unapproved items.

Bean is smart enough to know she shouldn't eat a lot of that stuff, and she has told them on 4 occassions, but she actually had one associate tell her she had to use the item anyway, and one time she trusted it was safe and would have eaten it (although the realized the mistake and took it back away before she did).

So, there MUST be a more fool proof way to ensure her safety in the classroom. Our open communciation doesn't seem to be doing it alone. In addition, since school has started, she has had two certain gluten reactions. The reason I know it is a gluten reaction is because it is unlike any other illness. When she gets gluten, she appears healthy, she'll be sitting there at our table, coloring or playing and she suddenly, without any warning at all, loses all bowel control and large amounts of liquid diarrhea come out. She is not otherwise "sick", and she doesn't even know what is happening, her body just relinquishes control of her bowels and she gets bad diarrhea. This has happened two times and both times, after school (within 3 hours after school each time). Previous to this, she has not had an incident in a year or more. Now, coupling this with them giving her gluten at least 5 times that I am aware of (and I would have no way of knowing if there were more) I can see we have to change something.

I'm sure some of you have some great ideas on how to address this in a more formal and effective manner. Currently I am talking to the principal and I sent out letter to her teacher and our AEA contact too.
Thanks in advance for any ideas!
warmly,
Laura

[jccgf]

Gosh... this is a hard one when you have already spoken with the school on a number of occasions.

I'm wondering if a medic alert bracelet might be in order. I'll google one up in a bit. There are some nice kid friendly choices out there these days. At least they would be more apt to BELIEVE your 5 year old knows more than they do....if she can back it up quickly with a bracelet warning.

Full proof... maybe stickers. I think they have those... that she could wear on her shirt...at least the first week or two of each year...until it gets planted in their brains.

I also rely on my daughter (now 10) to be on her toes. We've had just a couple of oops's in five years. One I have no idea what, but I got a call from the office... she had what seems to be a migraine headache and vomiting..followed by some diarrhea... no other signs of illness, and she's never had a headache like it again. I will never know for sure, but I do suspect that was a glutening.

Then, in science, they broke open 'moon rocks' that they had made... and wheat flour was in them. I only found out after the fact, when the recipe came home so they could make them at home if they wanted.

I think it is impossible to avoid all possible risks. BUT... the school should be trying... and they need to know about their oopses. I put gluten sensitivity on my daughter's health form, which prompted contact by a school nurse, and they sent out a form to all of her teachers (music, gym, you name it) to alert them, list all possible reactions, etc. Each teacher has to sign and keep a file. I don't really expect all these teachers can keep these things straight about all students, but there should be an attempt...especially by the main teacher. Teachers need to be trained to listen to students on such issues. I think everyone in the school seems to know about J and her food limitations now...after 5 years and many teachers. They've even gone out of their way to purchase cf/gf icecream on two occasions for ice cream days, and put fruit on the table for bake sales. This on THEIR OWN. I've been impressed on a number of occasions by the caring of staff. One teacher was giving her money out of her own pocket on a couple of occasions so she could go buy something she COULD have in the teachers lounge. I've had pretty good luck, but I do think we've just been lucky.

I think a big part of the battle plan is to educate our children at even these precious young ages. Praise your daughter for her assertiveness in handling these matters. Teach her to be direct and insistent if necessary, and to ask the teacher to call home or ask to see the principal if a teacher ever tries to dismiss her concern. Let her know that you will always be there to advocate for her (in 5 year old terms).

I'll try to find those bracelets.

I'm drawing a huge form on the specialized plans (IPE?) that can be worked out for students with special healthy or learning needs. It might get 'higher' status attention.

Cara

[jccgf]

Heres a start, but I swear I've seen cuter...so I'll keep looking. The sport bands are kind of nice~
http://www.americanmedical-id.com/ma...FSEzSQods0r_Xg

These are cute~
http://www.lifejewelry.com/

Wow! Tons more available than there were just a couple of years ago.

Just google

"medic alert bracelets kids"

"allergy alert bracelets kids"

"allergy alert stickers kids"


Might help a little. I do think it would add reinforcement to your daughter's words, despite the fact that in a perfect world we'd like that the teachers/ schools not screw up.

Cara

[sleepingbean]

Wow, those bracelets have come a long way! Thank you for the ideas and it's reasuring to hear some good news!
I had a good talk with the head nurse, teacher, and principal and I printed off some brochures for teachers from the GIG site to take in today as well. They are writing up their own protocol for me to approve at a meeting on the 6th, so we'll see how that goes too.

[KimS]

I had my kids wearing stretchy ones with a little 'apartment' inside. I would roll up a paper with their 'sensitivities' on it and clip it inside. This kind was the best for us because we kept finding new sensitivities... although (knock on wood) we seem to be passed 'growing' new sensitivities and are on the up-swing now with food variety.

They also were a little stretchy, so that if the bracelet got caught on something, the children weren't left dangling... they could just pull their hand out of it.

I really would promote children wearing these bracelets. It breaks my heart to see how some kids are overwhelmed by 'strange' adults trying to FORCE them to do something they know they're not supposed to do. These bracelets keep those nasty/disrespectful/evil adults away.

When my children were younger they used to call them their 'magic' bracelets because it protected them even when I wasn't around.

As they get older, I'm finding they don't seem to need them as much... Of course, everyone we associate with now knows that they'd have to deal with the 'wrath of Kim' if they try to feed my kids.

We got them at our local jewellery store.

[karen149]

Hi Laura,
I feel so bad that your daughter has the type of reaction she does! Is she in Kindergarten? My daughter is this year. I informed the principal of the situation when I met him during one of his "meet the prinicpal" monthly meetings(this is a year round school)that I started attending before school started. About two weeks before school, I called and asked to meet with the teacher. I was put off until I started trying to explain why. I later learned the key words are "I have a SPECIAL NEEDS child" to get things done.

The school nurse was notified along the the psychologist. I gave the nurse some web sites to educated herself before the meeting. I met with the nurse and teacher and we went through the classroom and talked about supplies. Fortunately, this teacher rarely gives out treats and is not focused on food stuff. I was kind of put off by the nurse seeming to give the impression that my child was now going to be cared for by the school district-like an ownership thing. I had to correct her misconception that it "only the glue stuff" the teacher had to worry about. I asked about the soap in the bathroom, the paper towels, paints, etc. I can go into the classroom to help anytime I want.

The nurse wrote up a plan of sorts for the district file. She said it's usually the older kids that would have an Indiviualized Education Plan or a 504 plan made.

The teacher informed all the other parents that if they want bring food for parties, etc. to give a three day notice. I had one considerate Mom ask before the track went off what candy my daughter could have in goody bags she was making to give out. I was very thankful for that but my daughter did receive a little pumpkin full of stuff that went right to the trash. She's been very good about accepting that but I felt bad when a student teacher gave out KitKat bars on her last day. She was watching everyone else get one and I could see her eyes getting red.

I've had one dissapointment so far that involved playdough. I bought a tub of GF clay from Discount School supply for the whole class to use. I boiled the teacher's existing dough toys and added some rolling pins and plastic pizza cutters to the new container I also bought. She said the tub would be enough for the class but my daughter came home and said another girl was using regular playdough with the toys. When I asked the teacher she said the girl was at another table and that she was going to clean the toys before using again. I had to explain tht you can't boil wood rolling pins or they'll splinter but it was just the fact that I had a huge label on the box that said to use only with the GF dough and that was ignored. Since her classroom is not totally organized I hid the regular dough and am bringing in another tub($$$) broken up into ziploc bags so one kid won't grab a whole color to themselves.

If you are continuing to have trouble maybe you can look into the 504 plan to be written up. That way they should not be lazy in any way about it. I feel lucky to have a proactive prinicipal vs. the school my son is finishing up at(we moved but he didn't want to change schools and my DD could have gone there, too.) before high school. The nurse of my daughter's endocrinologist offered to make a 504 but I said I would see how it goes. I like the idea of a bracelet and considered it. Next year when she will be at school all day and has to go to the cafeteria to eat her lunch we are going to read Eating Gluten Free with Emily to her class and give ideas on how they can help her be safe in the cafeteria. They have a table for allergy kids but I think she will be OK.

The CSA site has some good forms for school officials though it seems like it's for a child just diagnosed:
http://csaceliacs.org/CelKidsSchool.php

Here's another site that has some nice bracelets:
http://www.laurenshope.com/childrens...-bracelets.asp

Someone had posted this site at the old BT and they had some really good wording for their child's bracelet-I wish I could remember what it was!

[sleepingbean]

I knew this group would have some good ideas ! I will check out those links
Thanks!

I printed a flyer from GIG today (undersstanding your student with celiac disease...or something like that).
I gave 10 copies to her teacher to hand out in addition to the plan they are writing up. I feel good about it. I feel renewed that this CAN work and it CAN work well!



I will encourage Bean to continue to watch out for herself. It's amazing to me that a 5-6 year old CAN do that as well as she does. I never expected she'd need to, so I never really pushed that as an issue...you know what I mean? But it's rewarding and comforting to know that she will say "no" to gluten. It's kind of funny because they just finished the big week on "say no to drugs" and for us I just laugh because the odds of my kindergartner doing drugs would have to be about 0, but she gets offerred gluten on a much more frequent basis in our society.

[RathyKay]

Originally Posted by sleepingbean

The reason I know it is a gluten reaction is because it is unlike any other illness. When she gets gluten, she appears healthy, she'll be sitting there at our table, coloring or playing and she suddenly, without any warning at all, loses all bowel control and large amounts of liquid diarrhea come out. She is not otherwise "sick", and she doesn't even know what is happening, her body just relinquishes control of her bowels and she gets bad diarrhea.

So, once she clears her bowels, how is she afterwards? Is everything fine afterwards, or does she seem to have lingering symptoms? And the reason I ask... I picked up Tom early from school on Friday to take him to a vision evaluation as part of his upcoming triennial review. He seemed fine, and his teacher did not mention anything unusual when I picked him up. (We've had enough times when she has mentioned out of the ordinary behavior.) In the car, I realized he seemed... uncomfortable. When we got home, he got out of the car and stood there, ackwardly. I asked if he needed to be cleaned up, and he said yes. Afterwards, we started to his appointment. He didn't want to move, so I carried him. I told the evaluator that I wasn't sure how the appointment was going to go. I wondered if he had a stomach ache. I left him there and sat on the playground. They came out a little while later and she said she could hear his stomach. I took him to the bathroom, and there was diarrhea. So, I cleaned him up, and we went to wait for his sisters to get out of school. While holding him, I heard the ugly rumblings, and we went back to the bathroom. A ton of diarrhea. I managed to clean him up, and I got all of us back to the hotel as fast as I could. After a bath, he seemed fine. I actually had chicken broth, so I gave him some of that. But, he was hungry for supper and ate a lot of hamburgers. His stomach seemed fine. No other problems.

Anyway, I thought of your comments about out of the blue loss of bowel control. Somehow, based on his behaviour (and stomach) afterwards, I'm thinking it might have been gluten related? As opposed to a stomach bug. His fingernails were dirty, and I'm thinking Playdough? I asked if he played with it, and he said yes, but I'm not always sure when I ask leading questions with him. If he told me he played with Playdough, and I hadn't mentioned it, then I would have believed him. But, since I brought it up first... I don't know for sure. And, I'm not sure how he reacts to glutening, as we've not intentionally given him any, and I don't know of when he's had any. (And, yes, I need to buy some GF playdough for his school.) Anyway, I'm curious about your daughter's reaction, and if there's any more to it.

[LettieB]

Dear Laura,
My 12 yr old child had several times last year when she would react to gluten from something at school. I think the main reason was that they sit so close together at lunch. Other children's food particles seemed to "fly" through the air alot! The smaller the child, the worse it was. Several kids have dropped their pizza crust in my child's dish accidentally. Also, their little gluten hands touch everything! The soap in the dispenser in the bathroom also contained gluten. It seems sad to separate them from the group at lunch, but that's what I've done and it has helped tremendously.

Hope this helps.
Beth

[jccgf]

The soap in the dispenser in the bathroom also contained gluten.

We never went so far as to check the school soap but we did suspect it, and just stopped using it. My daughter had terrible, and I mean really bad, hand rashes...that seemed to begin just after school started. It took a couple of years for those to clear completely, but she hasn't had any rashes anywhere for such a long time now.

I know we also wondered about corn sensitivity, as we had heard that can show as hand rashes. But... I bet it was actually the soap.

Cara