Day Care And School

[nwacu]

My son has only tested positive for a severe gluten intolerance and we suspect celiacs and have been handling his intolerance accordingly. However, we have kept him out of day cares and schools (he is just 2 1/2) because when he gets the slightest amount of gluten he is very ill. How are you all handling day cares and schools? I know of one pre-school that is gluten free, but it is so far from our home. We know so many children who are also gluten intolerance and/or celiac and hopefully some of you are on here and can help sort out how you handle your kids situation!

Anyone from Portland, Oregon? Any of you interested in having some playdates? This is also a big problem as we can't seem to trust anyone but ourselves to not give our son gluten.

Thank you,

Lisa

[weluvgators]

Hi, Lisa! We moved away from the Portland area (Woodland, WA - but we went to Portland often) just four years ago. We kind of understood our situation then, but nothing like we do now. I wish I had a good excuse (and plenty of funds!) to visit there now, as we miss the area and the people we met/know there! And I wish I had some fantastic answer for you, but I don't. Our pediatrician and pediatric dentist that we had in Vancouver, WA, were the first healthcare people that we interacted with specific to our gluten condition, and I just don't think they had an appreciation for the severity of our issues. But, their non-invasive, wait and see approach made sense to me at the time . . . and I had NO IDEA that the extensive dental issues that first presented then were related to the gluten issues.

Anyway . . . not what you asked about, but it was the beginning for our "management" process of day care and school. I am the primary caregiver for our children (I have three young ones that are all super sensitive, as am I). I have hired people to come into our home and help manage/shool/play with them. I am in my second year now at our local public school system, and that is going . . . I don't even really know yet. It isn't perfect by any stretch, the oldest whom we didn't fully recognize as super sensitive had chronic healthcare issues from school exposure last year that we never could figure out (but NO ONE WAS WILLING TO REDUCE THE DAILY GLUTEN LOAD WITHOUT "PROOF" THAT WAS IT), and today is our first day with two in full day programs - no phone calls yet though - so *that* is fantastic . . . I think! We have to worry about gluten induced anaphylaxis with our one child, so no phone call yet is a good sign - especially after our very eventful summer that included hiving with airborne exposure. I am looking for the bright side to reduce my stress here.

So, for people that come into our home to help, they follow the rules. No gluten allowed. Handwash upon entering the home. We have had issues with caregivers that included: riding to work with their dogs in their laps (thus contaminating their clothing - we incorporated suggestions for maintaining clean clothes before coming to work) and with a caregiver taking on a second job at Huddle House (a pancake house - that didn't last long at all - I think it settled in her hair and *I* ended up sick!). This is all part of the interview process - I request no makeup, no sprays, no fragrances and request it during the interview, as some (many?) people cannot do it.

I gave up on day care. I couldn't have my kids in a church nursery safely, so daycare seemed so unrealistic (we live in a very rural area . . so extremely limited education, support and options). I would think that you may find a gluten free place where you are. Our old babysitters there were totally, totally awesome! Email me from the info on my profile page if you want some Portland specific suggestions for trying to track down understanding caregiver and schooling options.

For preschool, we opted to go through our public school system. They have decent food/learning segregation already in place, so it was easier for us to tweak that to try and make it work. We met with the teachers and nurse the spring prior to their start. I still do not think it is ideal by any means. I get upset when I see the accommodations, prescriptions and recommendations made for "diagnosed" celiacs that are not provided to us because our most reactive DD was never able to appropriately ingest gluten. Having a good, knowledgeable, proactive doctor as an advocate is the most helpful thing for navigating schools safely IME. However, we have been unable to find that healthcare provider to date. . . and we continue our search. It is exhausting!! Good luck and please keep us posted. It was really helpful to see your post here, as it is reassuring to know that we are not alone in our struggles with these issues.

Oh, and we provide gluten free doughs and tools for the school classes, as well as providing all of our children's foods . . . and often donating/providing snacks for the class to help reduce the overall gluten load in the classroom. We also supply and maintain HEPA filters in their classrooms. We were making tremendous progress last year with the principal, and then the district relocated him and brought in a new one . . . that is not implementing the changes that we had lined out with last year's principal. IT IS SO FRUSTRATING, and this is when the authorized, knowledgeable, caring and proactive healthcare provider would make it all the more simple, straight forward and easier to implement effective changes.

So far, all of our hard work has proven worthwhile. We really had to nurse super duper silly girl back into safe social settings. And we have made tremendous progress on that front in the past year, thanks in large part to the public preschool option. It was the teachers that did the work, and they were the ones that were willing to listen to me and implement my requests. I hope my little novel gives you something useful! I miss Portland and wish we could do a playgroup - cyber doesn't seem to cut it for the kids!!