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  • Profile picture of Sylvia Ross

Dealing with Food Allergies

Public Group active 1 month ago ago

A place to swap ideas and recipes or just mourn the loss of your favorite treats due to food allergies in the family.

Polling the audience… (10 posts)

  • Profile picture of said 2 years ago:

    Ok, so my daughter has Celiac disease. She failed to grow for 6 months at the age of 3 months due to lack of nutrients, resulting from her undiagnosed allergies. So here’s what I’m polling the audience about. She has a place she goes where she makes progress in her speech therapy, and social skills, has a good time and thrives. She likes it, and I like that she likes it. From a parental perspective, however, there’s a lot of BS to deal with that I don’t like. The icing on the cake, however, was yesterday when for the umpteenth time they gave her GLUTEN. They have strict instructions not to give her food I didn’t send her with. They have a list of foods and other items that contain gluten. I’ve spoken to them ad nauseum about not feeding her unless I sent it or they get my approval ahead of time. Despite all of this, I cannot get them to honor my requests, and she repeatedly gets gluten containing foods.

    I get it, really. Since she doesn’t immediately break into hives, or drop on the floor dead, it seems like not a big deal. But it IS a big deal.

    So, I’m at a point now, where I can choose to stop sending her there, or not. I’m very torn. Like I said, she’s happy, she’s thriving, mostly things are good. But then there’s the other stuff, and on top of that the continued proof that I cannot count on them to take her health seriously.

    What do y’all think? Would you try again, to get it through their heads? Would you trust them again?

    Thanks for the input.

    Laura

  • Profile picture of Julia Roberts Julia Roberts said 2 years ago:

    If you want to send her I’d say have a quick end of the year meeting and request a teacher that can follow directions! Maybe they have a teacher who eats gluten free or has food allergies so they are sensitive? Or they have a teacher who did/does well with food restrictions/allergies? The team will know the right person. I think if you want her to go there, you can find someone there. It’s worth a shot, I’d say. I don’t care if she doesn’t break into hives, she isn’t supposed to have it! So, what? They aren’t that way with PB and kids who are allergic? They need to follow diet stuff!

    Site co-founder and tired special needs mom to two cute kids; Gage and Quinnlin. Kids who’ve endured more than their share of medical and emotional issues. ARPKD (recessive polycystic kidney disease), ocularmotor apraxia, delays, IEPs,mental illness, kidney failure, dialysis, and kidney transplants
  • Profile picture of said 2 years ago:

    Thank you! Thank you SO much for the awesome empathy! You so totally get it. :-)

  • Profile picture of Sylvia Ross Sylvia Ross said 2 years ago:

    I’m dealing with similar issues. My daughter (age 3) has not been diagnosed with celiac but only because we went gluten free before she was old enough to test. She is starting preschool in the fall and she also goes to Sunday school at church, where snacks are frequently given. When we toured the preschool, I sat down with the director and am going to sit down with the teacher before school starts in the fall. If they can’t follow her diet, I will have no choice but to pull her out.

    When she’s been exposed to something she shouldn’t have, (in our case it’s gluten, eggs, soy, beans, and strawberries) we explain AGAIN that she doesn’t react immediately, and we kind of do a passive-aggressive thing… *blush* DH and I start talking about whose turn it is to stay up late with her while she vomits. If he’s not there, that doesn’t work… but it’s been very effective with Sunday school.

    One of the hardest things for us to convey is the pasta crafts, play-doh, etc. that are NOT safe! We actually did decide against one church because they just did. not. get it. She loved the teacher, we liked the church, but it wasn’t worth risking her health.

  • Profile picture of said 2 years ago:

    See, I almost wish she would vomit. With her, she gets diarrhea, and not every time, and not right away. So, they really think, “Well, she could just have one.” They were letting her play with play doh, without my knowledge. It took two weeks for her body to react and me to notice. The other problem is Julia never ever complains. Even as an infant. She was having blow out diarrhea 8 times a day every day for months on end. Her backside was raw. She was hungry. And she almost never cried. She smiled through her sigmoidoscopy. So even if she were sick, they’d never know it, or believe me. That’s what really grinds me. It’s like they think I’m some overreactive hypochondriac.

    To make the situation tougher, my husband and I are not seeing eye to eye on this particular subject. We’re not arguing or anything, he’s just 60-40 one way, and I’m 60-40 the other. *big sigh* I’ve got to decide something, but it’s very very hard.

  • Profile picture of Sylvia Ross Sylvia Ross said 2 years ago:

    It’s really hard when you and hubby don’t agree. We run into that a lot too, although not really with medical stuff. He defers to me a bit more than I’d like, but at least it’s not a source of conflict.

    With the play doh, http://www.discountschoolsupply.com has GREAT gluten free play doh for a really reasonable price (compared to most). http://www.discountschoolsupply.com/NewDSS/Product/ProductDetail.aspx?product=7566&keyword=gluten&scategoryid=0&CategorySearch=&Brand=&Price= The preschool director and I split the cost for her whole class to use it instead of regular so there’s no residue on the table, kids’ hands, etc. I don’t think she believed me at first, but she appeared to by the end of our talk.

    Celiac is definitely a “but you don’t LOOK sick” illness!

  • Profile picture of said 2 years ago:

    Thanks! We get our GF play doh from Blue Dominoes. And that’s the kicker! It’s IN HER CUBBY at school!

    And it’s true about the not looking sick. Unfortunately that’s the case with everything from which both of my children suffer/live with. If I had a nickel for every time someone told me, “But they look so NORMAL” or “I’d have never known” or “are you sure? he/she doesn’t seem any different from a regular kid” I’d be an incredibly wealthy woman.

  • Profile picture of Julia Roberts Julia Roberts said 2 years ago:

    Oh man, same here Laura! “But they don’t look sick!”

  • Profile picture of Sylvia Ross Sylvia Ross said 2 years ago:

    Yeah, I get a lot of people who think I’m torturing my daughter with tests trying to figure out what else is going on exactly… because she’s a normal looking 3 year old, except she’s smaller than most 18 month olds!

  • Profile picture of Marythemom Marythemom said 1 year, 10 months ago:

    My son was gluten free when he was 2 until the age of 5 (luckily not celiac and he outgrew it). The kicker was I was an administrator in the preschool and he STILL was given stuff he shouldn’t have. Luckily he got to the point where he would say, “I can’t have that.”

    Our problem was most of the teachers didn’t know what gluten was in. They’d never cooked so I often heard, “I didn’t give him bread. I gave him crackers.” They had no clue. We brought all of his snacks and meals, but substitutes, aides and just didn’t get it. Sometimes other parents would sneak the “poor child” a piece of candy or cookie to make things “fair.” The school had lots of vegetarians and kids with severe allergies that were frequently given the wrong foods. It was very frustrating knowing our school was better about food issues than almost all the schools out there (thanks mostly to me!), but we still couldn’t prevent it from happening.

    I guess it could be worse. My grandmother didn’t believe in food allergies so she would DELIBERATELY give my mom, my sister and I foods we were allergic to, to prove we didn’t have them. She somehow managed to ignore the rashes, vomiting and mouth ulcers and would fervently deny having put the allergens in things even when my mom pointed these out. We were taught to tell Grandmother that we “didn’t like” something rather than tell her we were allergic to it.

    Now I wish I could put my teens on special diets to see if they would help some of their issues, but I know my kids would never cooperate so there is no point. I miss the days of preschool when I (mostly) knew what they were being given to eat.

    Mary in TX

    Mary in TX
    http://marythemom-mayhem.blogspot.com
    ” Saying “no” is not being negative. Negative is saying “yes” to things that are destroying you..”