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StephanieL

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About StephanieL

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  1. Diagnosis for kids is different than adults. Also, there is often a need for a firmly documented diagnosis for many reasons (like for school accommodations and dietary accommodations in school/hospital). To the OP- is it ideal? No but is it the way they need it done. I would call to get on the cancellation list at the GI or have your ped cal as mentioned above but if you need to wait, I would keep the kiddo on till all the testing is complete.
  2. We were told not to bother gene testing our younger kids. They share genetics with Big Bro so there's a high chance they will have the genetics. We were told to watch for S&S and get tested every 2-3 years or sooner if there are S&S.
  3. Custom Probiotics was a game changer for my kiddo. Sent a sample and we were hooked after just 3 days! Pricy up front but worth every penny!
  4. My DS doesn't have immediate issues when he ingests gluten and can be 6-8 ish hours after he eats it (happened 2x in the first year post diagnosis.)
  5. No judgement here on your situation. Unfortunately it's not uncommon (sadly). A full blood panel isn't the only step for diagnosis in kids. For a variety of reasons there really should be a biopsy should the blood work warrant it. While NO procedure on your kiddo is "minor", an upper GI is relatively easy for the kiddo (I think all the waiting for the parents was the hardest for us!) There is no open wound, minimal risk of infection and so on. DS was 3 1/2 when he had his last endo and again, harder for me.
  6. You are doing the best you can Mama! Please don't think I was trying to judge- I was just relaying our experience was all. Sounds like you've been through the steps. The gluten thing may be. I was just trying to clarify when you said he had a gluten allergy that you mentioned in the first post then said it wasn't a wheat allergy. You can't be allergic to gluten but you can be allergic to the gluten containing grains so I was just trying to understand was all. Thats' why I asked. Allergy testing this young really is kind of hit an miss, even more so than when the kiddos get over and it's 50/50. I myself and many I know remove a lot of foods that don't need to be based on erroneous testing and I hate to see that since it can set up other issues. Again, that's why I was asking. If Melton tested for food you WEREN't seeing reactions to I would really seek another opinion because again, false positives are pretty common and definitely in the younger set (we were dx with all of the top 8 expect for wheat, citrus, corn and a few others when blanket tested. In reality, there were only 4 we did have true allergies to plus Celiac disease so... ) Allergens can take a while to clear out of breastmilk. Some up to 6 weeks. Have you considered seeing Dr. Witt in Cleveland? She specialized in babies and breastfeeding Mom's (we had a tongue tie issue with our 3rd along with other dietary and nursing issues- she's amazing!) Just an option but I know you are already doing so much. Again, you know your family and what you choose if absolutely the best for them no matter what route you choose!
  7. You mention gluten in your first post-I'm a little confused. A really good food log can often help pinpoint the offending foods when nursing (we did every ingredient, time, reaction time, BM info) to figure it out. I nursed 3 kids with a variety of intolerance/allgery issues over 7 years. This is what helped find the problems for us. I was very committed to nursing so was willing to do what I could but did look at super specialized formulas if we needed to go there. They proteins are so broken down that they are tolerated by most kiddos but not all. It is very expensive as well (I'm sure you know all this). I know the Neonate Splash my kid is on now at 9 is $6.50 per "juice box" and they want him on 3-5 day.
  8. I am in NE Ohio. I'm going to guess you see Dr. Melton. Also, was it wheat that he was dx with? Because there isn't a real gluten allergy though you can be allergic to wheat.
  9. Scratch testing on an infant that age is unusual. What reactions were you seeing that lead to testing? Also know that allergy testing is only accurate about 50% of the time when there is a positive result. As for probiotics- you can check out Custom Probiotics. They were a miracle for our kiddo. I know they are free of D,E, PN, TN and gluten for sure but you would have to check for corn which we did have to avoid for a while and know it's hard to do on top of all the others.
  10. There is no reason to isolate you kiddo in school with a 504. The idea of a 504 is actually to NOT exclude kiddos with non-learning issue issues. I would really look at what you need to keep her safe and included and work on those things for the 504 plan.
  11. Lactose intolerance and an allergy to DAIRY are two VERY different things. The Dr. is right- you can't have an allergy to lactose which is a sugar. You can be intolerant though. A dairy allergy involves things like hive, GI issues, breathing difficulty and other issues.
  12. They will print out an exact list if you ask them.
  13. Most restaurants won't heat things up for you. How old is your kiddo? I know when we have family things, the kids are usually off playing so missing a starter wouldn't even be an issue. That said, could you do salad or some kind of "pizza" kind of roll up or mini? Something in a muffin tin?
  14. I don't think occasional "I didn't wash up" is going to keep her levels up like that. We are very cautious here (and did have a 504 plan to keep him safe at school) and it still took a long time for the levels to drop. If she's at a public school and you are concerned about her getting glutened there-you could go for a 504. Then you have the school make sure THEY are wiping down the eating space and so on. Another question, have all the labs been done at the same place? That is something to look at too.