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africanqueen99

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Everything posted by africanqueen99

  1. africanqueen99
    Your physicians work for you. I would let them know your concerns and tell them the tests you would like run. But this is coming from a woman that has happily "fired" a few doctors in her day...
  2. africanqueen99
    The baby is 3 months, correct? Still nursing? I don't understand how he would have gluten in his diet if you're celiac and gluten-free.
  3. africanqueen99
    Tinkyada makes lasagna noodles.
  4. africanqueen99
    She'll take some time to start feeling better and it's awesome when you look at the calendar and think "Hmm...when was the last time I heard about her upset tummy?" and can't remember. I also met with a dietician, but it wasn't a good use of my time. She didn't live this celiac so she had the book knowledge and some personal anecdotes - not the reality...
  5. africanqueen99
    For the school to comply with 504 accommodations you don't need proof via biopsy. The only requirement is DX by physician. My kids' GI doesn't require a positive biopsy to DX.
  6. africanqueen99
    We went ahead and scoped the two oldest kids. I wanted to know what we were starting with - in case there was serious damage. Both came back negative from the biopsy, but the oldest was still DX. Here's what I wrote on another board about our experiences:
  7. africanqueen99
    I'm so sorry your son is having all these issues with adults that are supposed to be supportive. It's just so unkind that they're not willing to work with him. Frankly, I'd seriously consider an equivalency exam and then roll into either community college or university. Because university professors make their own rules and regulations for their courses...
  8. africanqueen99
    I just went through the 504 process and it was SO MUCH EASIER than I expected. Man, I was expecting a fight and going all "mama bear" on them and it was really an easy and engaging process.
  9. africanqueen99
    Great job, Mom! Look, he's already healing and starting his journey. Keep it up and stay on top of the school!
  10. africanqueen99
    I'm still nursing my youngest (she's 2 - DX at 18 months). Yes, ABSOLUTELY, gluten was being passed in BM. I still remember the screams in pain. Now that we're all gluten-free and she's still nursing the only screams come from being glutened...not from me.
  11. africanqueen99
    Do you have a box of treats/rewards/birthday snacks/etc that you keep at school? I'm trying to think of what to send. I will have a couple of Go Picnics for the nurse to use in an emergency, but the teacher would like something for the unplanned birthday party. I was thinking of little bags of M&Ms, skittles, and tootsie pops. Anything else that...
  12. africanqueen99
    We are a 504 family too. Have one for elementary kid and working on one for preschool kid (preschool is within our school district). Frankly, I needed them to appreciate that it's their responsibility to keep my kid safe all the hours they have her. It's a legal, binding document and they take those seriously. Plus, it's nice to know that substitutes...
  13. africanqueen99
    ^^^ Yep! They're keeping Go Picnics for me in the nurse's office. We live in a large district that has one facility that makes the food and delivers daily. If the Atlanta event happened NONE of the kids would be eating (except my kid and her special food!). This elementary is smack dab in the middle of a neighborhood and I have no doubt that people would...
  14. africanqueen99
    Thanks again for all your help while putting this together. We met today to put together the plan. And, I just have to brag, I love my daughter's school! The Principal started with how much they care about the kids and that they always work with parents - even without a 504, but he's always happy to have the plan in place. Everything went without a...
  15. africanqueen99
    You're making a good point. I've been slowly working with her to really empower her on what she needs to do - it's so hard to make silly choices like this.
  16. africanqueen99
    Would you let your *almost 8 year old* do a craft with pasta for Girl Scouts? Pasta would be spray painted white first and the activity is decorating it with Sharpie. I already told them that she can't do it, but now I'm wondering if I'm overthinking. She would have access to soap and water when finished. This kid is a chronic lip picker - which is...
  17. africanqueen99
    I'm going to be odd man out here. We're talking about a kid that will live a long healthy life, but on a crazy, restricted diet. So I'd run another set of blood work before taking her off gluten. Yes, it SUCKS doing blood again for kids. Yes, I did it for my two positive kids. Yes, I *needed* to know it was positive and not a weird mix-up at the lab...
  18. africanqueen99
    Re: band aid. Was it one with a stronger adhesive? (You know, not the cheapies that fall off, but one that when you pull it off it pulls the skin.) ALL my kids (me too) get a rash with the stronger adhesive ones because we tend to leave them on longer. I think it's lack of breathing more than a latex issue. At least that's my sad $.02. Anyway, I...
  19. africanqueen99
    I made my own list to distribute to Girl Scouts, sport parents, etc. Feel free to C/P and then adjust at will. *** Gluten Free Snack Foods: Look at the ingredient list - only things without wheat, rye, barley, malt, oats and NOT made in a facility with those items. Fruit * bananas, apples, strawberries, grapes, etc (washed but not cut) * Go...
  20. africanqueen99
    Our GI DX my oldest even with a negative biopsy and her blood work in the "positive, but not crazy high" category. She was willing to look beyond the "golden standard" and focus on the entire package (sibling DX, lack of growth for over a year, GI issues, etc). Perhaps your GI will do the same? Either way, what's the harm with stopping gluten to see if...
  21. africanqueen99
    Awesome! Thank you so much. We are past the original 30 days, but we had that cancelled due to snow. I sent the nurse an email on 12/20 (first day of winter break) asking to get on the books in early January because "the longer she goes without a formal safety plan the less secure I feel sending her to school." Today is the first day back at school since...
  22. africanqueen99
    As a former Thyroid Cancer patient I know way too much about TSH. It is currently recommended that patients be between .1-1.0 to be in the normal range. "Old School" doctors say anything below 3.0. "Super Old School" recommend below 7.0. To keep the cancer from regrowing my TSH is kept at .01 and that's my normal - I'm pretty sure that I'd be showing...
  23. africanqueen99
    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...
  24. africanqueen99
    As much as I'm still very much in the controlling-everything-that-touches-their-lips phase I have high expectations of family and friends being open to my kids needs. If my MIL told me she was have a bagel breakfast I would expect my kids' needs to be met - bag of Udi's bagels (unopened for me to deal with), individual yogurt and cream cheese containers...
  25. africanqueen99
    Burndee - I put this together and took it to the head of the "Mom and Me" classes. She's also the person that I'll work with the develop a 504 Plan for KMO. That same 504 will follow her (modified, of course) through college. Anyway, it might be a good starting point for you to work with the day care. *** Celiac Disease Child: X (DOB 1/23/12)...
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