I Just Need To Vent To People Who Understand

[Amyleigh0007]

I am a teacher and Friday we had our back to school staff meeting. The nurse always comes in and informs the staff of any students who have medical issues and what needs to be done to keep them safe. Not one single word was said about my son (who attends the same school) even though he has Celiac disease and many food allergies. That really, really made me mad since he is on such a strict diet and can not under any circumstances be given food. I asked the nurse after the meeting why she didn't bring up my son and state the fact he can not eat anything that isn't brought from home and she said since it's not a life threatening condition she felt she didn't need to discuss it. Wrong! I have given this woman tons of information about Celiac disease and talked to her at length about my son but she is still clueless! I am so frustrated right now.

[Mom of a Celiac toddler]

I am so sorry for your experience! I too am a teacher, and that is deplorable! I have had my fair share of various run-ins with our school nurse for other health issues. However, we have not had one kid in our school with diagnosed celiacs in my 10 years there. If we don't have another until my son gets there in 3 years he will be the first. I did find a book that you may have already, "The gluten-free Kid." Unfortanately, your nurse is probably not going to change her views, but it may be worth asking his teacher to read this book to the class, if your son is comfortable with that. You may already do this, but having each teacher read this very simple book is an easy way to introduce the topic to the teacher and then to the kids. (If all your teachers and principal are on board, maybe the nurse will start to feel some pressure!) You could donate it to your school library, further spreading the word to other families. Good luck with the school year!

[Mskedi]

How frustrating! Will you be informing your son's teachers about it since they obviously won't be getting the information from the nurse?

[Lisa]

I know you have this information Amy. Hopefully, this will help others:

Open Original Shared Link

Open Original Shared Link

[Amyleigh0007]

Thanks for the support. Most of the teachers already know about my son. But, what made me so upset was the way the nurse blew it off, like it wasn't important enough to remind everyone and inform the new staff. All I wanted was a gentle reminder not to give him food. I am hoping to have a meeting soon to set up a 504 Plan for him. My son is really good about rejecting food he knows he can't have but he still is a child and he needs guidance and encouragement to stick with it. He told me he doesn't want anyone to know he has Celiac but I told him the teachers have to know so they can help him stay safe. It's heartbreaking.

[dilettantesteph]

When my son was first diagnosed it took us a while to figure out the diet. He felt nauseated and had acid reflux quite frequently at school. When he went to the nurse she would take his temperature and since he didn't have a fever would send him back to class. This was after the doctor sent pages of information and instructions to the school.

[mum of 2]

Hello this is my first time on the forums, so new to this. I was wondering if any of you can help me. My mother is a Ceoliac and I myself have been tested throughout the years and do not have the condition. When my daughter was born seven years ago I introduced gluten into her diet slowly at the age of 1 and she has never shown any signs or symptoms.

My Son is two the end of Sept, I did the same with him and introduced gluten slowly and everything was OK till a couple of months ago. My son has very loose nappies all the time and after meals sometimes he develops a rash around his mouth almost like a nettle rash, that would be the only way to describe it in appearance, the first time it happend we had just finished lunch in town when I noticed these white small patchy blisters surrounded by a red rash around his mouth and creeping up towards his cheeks, I quickly rushed to the nearest chemist and sought advice and gave him a dose of piriton. The rash subsided after 20 mins and there wasn't any rash or swelling inside his mouth. I have taken him the doctors today and had him referred to see a specialist so I guess we will see, but I just wondered if any mums had experienced anything like this at all?

My mother is convinced that my son has Ceoliac and I have to admit I have a feeling it could be? I just can't seem to pin point what it is that he's eating that's causing these symptoms? Dawn x

[Generic]

I realized years ago that most school nurses are (trying to be nice) an embarrassment to their profession. I never had to educate about my daughter having Celiac since she is older and fends for herself. But I did have to deal with a nurse who kept sending kids home because "they had head lice". My daughter had dandruff. I spent 12 hours going through her whole head of overly thick hair. I wanted to make sure I hadn't missed anything. plus the cost of that horrible pesticide shampoo. and she missed a day of school to boot.

I brought her back in the next day to have her "re-checked" even though I knew she didn't have them. She yelled at my daughter because "she moved her head and she lost the bug". and that I should check her head again when she got home from school today. But she would go ahead and let her go to class.

At this point I became a Tyrannosaurus Rex mom and proceeded to inform her about how my daughter never had it and I didn't appreciate her wasting my time and money. She then confessed to me that she had never actually seen a lice bug or a nit herself! ARE YOU KIDDING ME!? She tried to convince me to get on her team to look for them. I said no, I don't like them and I don't want to deal with them. Just the thought of them give me the heevie-jeevies.

[NewGFMom]

I'm in the process of putting together a 504 plan for my son and it includes required training for all the teachers at the school so that they will understand celiac disease. They will even have to take a little test on it to make sure they have read and understand the materials.

It might be worth putting together a 504 plan if your nurse is not taking you seriously enough. If you're not comfortable with the communication level, this could be a great tool to spell out what your expectations are to keep your child safe.

-Margaret

[RideAllWays]

Sorry to hear about this. It's frustrating when people think it's not a big deal eh? It just makes me so mad, I could rant for hours.

What is a 504 plan?

[NewGFMom]

A 504 plan refers to section 504 of the Americans with Disabilities Act. It's a binding contract you make with your public school about the accommodations that they need to make to deal with any medical condition a child may have, such as celiac or a much more severe disability.

Do they have something similar in Canada?

and nice horse... I miss horses.

[Caseysmommy]

A 504 plan refers to section 504 of the Americans with Disabilities Act. It's a binding contract you make with your public school about the accommodations that they need to make to deal with any medical condition a child may have, such as celiac or a much more severe disability.

Do they have something similar in Canada?

and nice horse... I miss horses.

For the 504 Plan do the child have to be diagnosed by a doctor to use this Plan or is a self diagnoses ok?

[Lisa]

Here is some great information that happygirl posted on another thread:

Open Original Shared Link

Open Original Shared Link

And on 54 Plan:

Open Original Shared Link

Qualification

Celiac disease by itself does not qualify a student for services. The illness must cause a substantial limitation on the child’s ability to learn or other major life activity, but the illness combined with other factors may. Each candidate pursuing a 504 Plan must make an individualized argument for why he or she should qualify and why lack of accommodation would be detrimental to their education (be it academic, social, emotional, cultural, or physical). A multi-disciplinary team gathers to review relevant information from a variety of sources: teacher’s notes, child’s achievement tests or physical condition, social and cultural background, physician’s report, etc. All contributed information must be documented and relevant information to the child’s learning process must be considered. If a parent disagrees with the findings of the school district then the parent may request a due process hearing.