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Public Schools Shrugs Celiac


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21 replies to this topic

#1 GFX3

 
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Posted 09 January 2014 - 05:00 PM

I am a stay at home mom of 2 celiac daughters and I have celiac myself.  We are in our first year of kindergarten 1/2 day and its been a ride.  At the beginning of the year I swear I did everything I could to prepare the school for my daughter to enter a safe learning environment.  I met with the nurse and provided a safe list and an unsafe list for food and crafts etc.  At the time my gut didn't feel right with her and I now kick myself for not drilling her knowledge but I can't go back now.  Fast-forward to the holidays..  YIPPEE  Not quite.  The gingerbread man visited Kindergarten and shared all of their cookies with the children.

 

My daughter is the only one her class that is gluten-free with celiac.  It is labeled in her lunch box in her file and drilled in her brain.  Peer pressure got the best of her when her teacher gave her a cookie and then she brought the rest home!  At 5 years old I do not blame her.  So when I notified the nurse that my daughter was given poison (gluten) in the classroom she insisted that it was just the flu.  My daughter missed her first 3 days of school because of a gingerbread man foot from the teacher.

 

I am extremely frustrated and need to know how to truly relay my message that this is no joke.  I have provided medical documentation.  Emailed links and images of reactions etc.  I contacted our GI doc and he just offered to write a letter.  I don't know what I am really looking for from them but full of rage because of this incident.  Every other school I ask about says that they can't feed the children unless they check with the nurse.  My daughter really suffered from this slip and I feel like she was the only one who learned a lesson --the hard way.


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#2 Mayasmum

 
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Posted 09 January 2014 - 05:14 PM

I would notify the head, this is unacceptable from them.

My daughter's school has been amazing - it helps that her nurse and teacher are on board and they call me if something is beng offered that is questionable.

 

They were fully informed about it - they have no excuse. I would call for a interview with the head.


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#3 StephanieL

 
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Posted 09 January 2014 - 05:57 PM

Is this a public school in the US? If so, you need to get a 504 plan on the books!


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#4 powerofpositivethinking

 
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Posted 09 January 2014 - 07:19 PM

I completely agree with StephanieL  :)  I am a public school teacher and 504s must be followed or serious legal repercussions can take place.  Even though it seems like you've done your part obviously the school is oblivious to the needs of your child, so it's time to amp it up by getting a 504 plan in place to show the school you mean business.  I think the most important people to alert of your child's needs are the school nurse, classroom teacher, who unfortunately both don't seem to be doing their job, cafeteria head and aides, and all other teachers your child comes in contact with art, PE, computer and music.

 

I teach music, and although I review the medical alerts and make notes in my gradebook about children and their medical conditions, it's great when the parent sends me a direct e-mail to let me know about their child's needs.  Don't solely rely on the classroom teacher to send an e-mail out to the specialists in the school, if the e-mail comes directly from the parent that always heightens my awareness.

 

I still don't understand that we have all these peanut free zones in schools, but yet why don't we have gluten-free zones  :(

 

 

Is this a public school in the US? If so, you need to get a 504 plan on the books!


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#5 brileighlevi

 
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Posted 09 January 2014 - 07:40 PM

Wow! I'm so sorry mama! That's insane. Definitely get the 504 since they might take that a little more seriously. I'm lucky that my daughter's school isn't as crazy. Although we haven't gotten confirmation yet about the celiac we were told lactose intolerance for sure and we're waiting on more results. The school has been great about being careful of her needs and her teacher especially. I think it works in my favor that the teacher's son unfortunately has an odd disorder himself so she knows what it feels like to have a kid with different needs. Get the 504 and the letter from the doctor if you haven't already. It should help heighten their attention since they won't want to risk a lawsuit.


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#6 StephanieL

 
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Posted 09 January 2014 - 08:03 PM

 

I still don't understand that we have all these peanut free zones in schools, but yet why don't we have gluten-free zones  :(

 

That's because the likelihood of dying for peanuts is much higher than a glutening.  There aren't milk or egg zones either.  Each school needs to do what they need for it's students and for some peanuts/nuts will kill students. The same could be said for milk/eggs/fish and on and on. There ARE ways to portent all these kids if everyone would just work together!


You need to find out who the 504 coordinator of the school is and send them a meeting request for a 504 due to Celiac disease.  At that point they have 30 days to have the meeting. I also cc'ed the principal, school nurse and assistant super.  I included a note from our Dr's as well as to what life functions are impacted by Celiac (GI being the main one).  I would have your list of accommodations ready to go when you have your eligibility meeting incase one rolls into the other. 


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#7 powerofpositivethinking

 
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Posted 10 January 2014 - 03:24 AM

that does make sense, but I still wish they did have something  :(

 

FWIW, I would caution about first ccing the assistant superintendent unless your child is part of a small district.  I would keep it in house first out of respect, but if they drag their feet setting up the meeting then I would resend the e-mail and include him/her on the second go round.  In my district the 504 coordinators are the school counselors.  They are the ones who have all the students 504s on file and send updates when needed.

 

If you choose to bring an advocate with you for the 504 meeting, I would e-mail the 504 coordinator and meeting team ahead just as a heads up that someone else will be joining you, so they are not surprised at the meeting.  In addition, you have every right to question who will be at the meeting from the school's side.

 

I realize that the school has not been accommodating thus far, but doing the above items will help to keep your relationship with the school hopefully a more positive experience heading forward since your daughter is only in kindergarten and she will be with that staff for awhile.

 

here is a recent thread with specifics of what would be good to include in the 504 plan:

 

http://www.celiac.co...05496-504-plan/

 

good luck!

 

That's because the likelihood of dying for peanuts is much higher than a glutening.  There aren't milk or egg zones either.  Each school needs to do what they need for it's students and for some peanuts/nuts will kill students. The same could be said for milk/eggs/fish and on and on. There ARE ways to portent all these kids if everyone would just work together!
 


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#8 lisalamitie

 
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Posted 10 January 2014 - 06:46 AM

My daughters 2nd grade teachers gives me a heads up when they are having a class party. When they did gingerbread trains I brought in her own special foods. She also has a box of gluten-free cookies at the teachers desk so that when they celebrate a birthday she has a special treat as well. If they are literally giving her foods that have gluten they are extremely irresponsible. I am sure someone in the school bylaws that they have to accommodate kids with allergies. Go over their heads for sure. And shame on them.


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#9 dilettantesteph

 
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Posted 10 January 2014 - 07:52 AM

I am sorry that this happened to you.  Schools vary widely with how they treat a celiac child.  At my son's school, despite extensive documentation about how to treat his condition, they gave him gluten and then the principal threatened to call child protective services on me when I didn't send him in sick.  He had already missed a lot of school before getting the diagnosis.  I contacted the superintendent of schools and things improved.  He is still in the same district at a different school and they are still not dealing with it terribly well.  Things will improve over time as they have experience with more of these children.  Meanwhile we pioneers need to educate and advocate for our children.  I wish you the best.


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#10 africanqueen99

 
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Posted 10 January 2014 - 09:30 AM

I'm with everybody else - she needs a 504.  Until you have something in place the school isn't held responsible for keeping her safe.

 

My daughter's school has the nurse as the 504 coordinator.  Also included in the meeting are: Principal, Vice Principal, Teacher, Grade Counselor (school has two) and the Manager of Health Services for the District.  Once we get something in place I really like the idea of contacting the Specials teachers to just stay on their radar.  This is going to be my first of two celiacs in the school so I'm trying to be super helpful now knowing that I have a good decade dealing with these people.

 

You need to find out who the 504 coordinator of the school is and send them a meeting request for a 504 due to Celiac disease.  At that point they have 30 days to have the meeting.

Stephanie - where did you find that 30 day time frame?  I have tried googling it several times (after you mentioned it before), but I'm not finding anything stating so.  Is it state specific?  I got the GI's note with DX in to the school on 11/12 and still haven't had a meeting.  To be fair we had a snow day on the originally set date and then two weeks later we started winter break (two weeks long - which turned into three weeks with more snow days).


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Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (8 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (4 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.  DX with gastritis.

Kid 3 (2 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 


#11 powerofpositivethinking

 
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Posted 10 January 2014 - 10:28 AM

I had success googling the following phrase:  30 day request for 504 eligibility meeting

 

take a look at page 10 of this document:  http://www.advocates..._guide.pdf?pt=1

 

hope this helps africanqueen!

 

 

 

Stephanie - where did you find that 30 day time frame?  I have tried googling it several times (after you mentioned it before), but I'm not finding anything stating so.  Is it state specific?  I got the GI's note with DX in to the school on 11/12 and still haven't had a meeting.  To be fair we had a snow day on the originally set date and then two weeks later we started winter break (two weeks long - which turned into three weeks with more snow days).


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#12 StephanieL

 
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Posted 10 January 2014 - 10:32 AM

I'm looking for DOJ stuff too but there is a place in the above document stating 30 days. The one thing I would caution is that I would never include my list of accommodations BEFORE getting the eligibility squared FIRST!  Sometimes schools will see what you need and decide to deny the 504.  Celiac qualifies. PERIOD. After you get the eligibility THEN and only then should you "show your hand".


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#13 bartfull

 
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Posted 10 January 2014 - 11:08 AM

I would talk to the principal and the superintendant. I would ask them if they are as lax about peanuts as they are about gluten and point out to them that THEY made your daughter sick because of that laxness. I would get the letter from the doctor, and then ask to review everything you have already given them. Then, I would mention the word "lawyer".

 

I'm not syaing you should sue, but if they fear that you might, they will probably get ALL the teachers and staff together and go through the protocals for all students with medical issues. I'm sure there are other kids in the school with either celiac or allergies. You would be doing all of them a favor by pushing this issue.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#14 StephanieL

 
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Posted 10 January 2014 - 11:19 AM

Can we PLEASE stop equating a peanut allergy to being glutened. They are two completely different things. Glutening is BAD. Very bad.  One single glutening is highly unlikely to be fatal. 

 

 

I would tread very carefully. You are already meeting some resistance and I would try the "kill them with kindness" before you start any kind of discussion in a threatening tone.  You have a lot of years to deal with these people and if you have more littles at home that is extended.  It's about being firm with them and getting what your daughter needs with the minimal disruption to the daily inns and outs of the school day.


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#15 bartfull

 
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Posted 10 January 2014 - 11:40 AM

Yes, peanut allergies CAN kill, but often they don't kill, but cause severe asthma-like symptoms. And other allergies can trigger asthma too. My step-son had asthma and missed a lot of school. A child with celiac will miss a lot of school if she is constantly glutened.

 

The OP said she had "done everything she could" to insure her child would not be given gluten, and yet they did not heed the instructions they were given. It is my opinion that something more should be done.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 





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