Confirmed Dx And Schools?

[justlovlie]

Hi all,

My daughter will be starting kindergarten in the fall, and I'm wondering if we should attempt to get a firm diagnosis before then. I have heard that schools are less willing to make accommodations without it, but I don't really know what that means in practical terms.

Right now her diagnosis is 'presumed celiac' due to the fact that we were gluten-free prior to testing. Eliminating gluten made a very clear difference in her health, and her former GI did not want to do a gluten challenge at the time (when she was 3) for fear that it could really hurt her uneccessarily.

Now she's a bit older, and we have moved and are on the hunt for a new GI. I have emailed the school nurse for guidance on the issue but haven't heard back yet. I will consider doing the challenge over the summer if there is value in it. In the meantime, she continues to react even to very small exposures such as cross contamination...the thought of loading her up on gluten has me shaking in my boots! What are your experiences with schools and having a firm dx vs just asking them to help her avoid gluten? We will be providing all of her food, and she is *usually* very good at self-policing what she eats. So I'm curous what the practical differences are.

Thanks!

[MycasMommy]

You should be able to get a doctors note regarding it as medically needed. It Seems your Pediatrician may be willing to do that.  On a more practical level, you may want to ALWAYS pack her lunches and even with the note, personally speak to her teachers directly. if she is so sensitive.  JMHO

[StephanieL]

Schools will want a dx (medically needed I don't think is covered it needs to be an actual dx).  How you get that is up to you/your Dr. If they are willing to say "Celiac" based on what you are saying then you have a dx from the Dr.  You will need to follow the formal 504 request path and provide them with the necessary paperwork to determine eligibility.  It may seem simple and she may self police but there are many many situations you will find that come up that make dealing with school an issue.  There are class partied, school mates birthdays, playdoh, macaroni art projects and eating in the classrooms, tech labs, hands all over tech devices.  If she is that sensitive, I would think it is more than just "don't feed her" but you may have a different comfort level. I would not send my kid to school without a plan in place for his/her safety but admittedly our issues go beyond gluten. 

 

Hope that helps and good luck!   We're here for ya!

[MycasMommy]

 How you get that is up to you/your Dr. If they are willing to say "Celiac" based on what you are saying then you have a dx from the Dr. 

Hope that helps and good luck!   We're here for ya!

That is what I was getting at.

[justlovlie]

That is our issue...our old GI was not yet willing to say celiac for sure, yet she also didn't want to do the challenge. Her labs didn't indicate celiac since she was already gluten-free, but they were mildly poditive for wheat intolerance. We were in an awkward spot in that the GI said her symptoms were far more severe than she would expect for a "low level intolerance" and looked like celiac - but she wasn't willing to give her a lifelong diagnosis without the hard evidence. I certainly see her point in that a wheat intolerance often is 'outgrown'.

Hopefully a fresh set of eyes from a new GI now that we have moved will clear up this muddy mess! In the meantime, I've just been curious as to what the day to day differences are in public schools if she did have a confirmed diagnosis. Our preschool has been excellent about working with us, but that's in large part because they suffered with us through the massive, uncontrollable, and super foul diarrhea and behavioral issues when we were first figuring it out! We had no formal plan in place, but we all learned together how sensitive she is and how to mitigate that. Maybe we have been spoiled by their good care of her! It's because of this that I am assuming we can get by well enough without the official stuff - but obviously a large public school situation is going to be very different. I'm looking forward to seeing what the school nurse suggests.

[BlessedMommy]

What were your lab results?

 

There are no blood tests for wheat intolerance, so if she was mildly positive, it is likely celiac.

[justlovlie]

Hrm, that's interesting, I wasn't aware of that. I need to find her old labs...

[kb27]

It really depends on the school as to whether or not you need an official diagnosis. 

 

Our elementary school was willing to work with my son even without a letter from the doctor.  We had no problems with any teachers, from art to after-school care.  They were very accommodating.  We did not attempt to have him eat at the cafeteria.

 

Now he's in middle school.  There, I think the letter is more important.  He had to get a note from the doctor to get accommodations in the cafeteria.  And then we needed another note specifically relating to cooking class (because the first note just said he couldn't eat gluten).  

 

We did not get a 504 plan set up because the school seemed able to just work with a doctor's note.  

[StephanieL]

The thing with having a 504 is that it LEGALLY covers you AND the school.  I have heard many times about "they were accommodating till they weren't" and that's when the trouble starts  I am glad it is working for you!

Another thing people like having them for is when the kids get to college and need something bigger like permission to live not in a dorm in the freshman year because they need cooking facilities and stuff like that.  It's easier to get a 504 early in school.