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ryebaby0

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About ryebaby0

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  1. We live in a University town, and 1,500+ students have been stricken with "flu-like" illness since Sept. (They don't test for H1N1 and assume that's what it is, since it's too early for seasonal flu). The school I work in had an absentee rate of about 20%, and every single teacher and most aides have had it. The severity has ranged from very mild to quite severe. My district is quite aggressive with prevention and there have only been a few hospitalizations, no deaths. Since vaccinations have increased, the spread has slowed. (and having so many kids sick-and-recovered makes them immune, too)

    Something to remember is that H1N1 doesn't have to be life-threatening to be serious. Students, staff, and their families, are missing about 4-6 days plus a few more of "I feel better but not great" days. It is extremely disruptive.

    My college-age son got the attentuated (flumist) vaccine with no side effects. My younger son is immune-impaired and we will get him the shot as soon as there are some here. (What was available has gone to babies and asthmatic children) His doctors have no hesitation or question, and they are at one of the nation's most respected pediatric research hospitals.


  2. You can't hear this enough -- that is a GREAT kid you have there! Being able to say no and stick to it is a incredibly valuable skill for a tweenage girl with food issues. Good for her for communicating, and for you for sticking by her unapologetically.

    Now, you have a teachable moment. You cannot stop this annoying teacher behavior. But, here's a chance to teach your daughter another great celiac lifeskill: Ignoring People Who Just Don't Get It. When the teacher brings it up, just kill her with kindess and polite behavior. You know, the way you'd talk to the slightly odd person on the bus. If she is agitated and annoyed with you, still, you can eventually move to something like "I really would rather not talk about this any more, we're happy with how it worked out for her and appreciate your effort". You are modelling the behavior for your child. And apparently this teacher is going to give you the opportunity to model it again and again! (I once had a teacher aghast at the cost she'd paid for gluten-free pretzels. I just went "omigosh i KNOW!! can you imagine my GROCERY bill?!" That was the end of that pity-party)

    I'd avoid the principal, myself. Just pushes it into another level of confrontation. Save the principal for something bigger than an annoying teacher who won't get over it already. You've done good!


  3. Our hosted events are always gluten-free --- I agree that our children need to learn what's okay and what's not, but in their own home, they should not be worrying about cross contamination of sticky cheerio hands on their toys. IMHO, people are so reluctant to host that you should be good with a "when we have playground here, it's no food" or only the food you provide.

    But my real question is why no ice cream? Lots and lots of ice cream is gluten-free....


  4. It is a hard thing to be gluten free, the first year. Lots of grieving and second guessing and sadness is okay, and part of the journey. But I wanted you to hear our story, in a nutshell:

    When my son was 4, we went from his pedi. to a major med center to dx his constipation issues. They wanted to scope him. We decided against it. When he was 8, he fell ill. In the space of a few months, he was unable to eat, couldn't walk from the pain in his ankles and knees. He was eventually hospitalized for 44 days,(and missed 7 months of school) during which he was fed via IV, his gi tract was so ravaged by the undiagnosed celiac disease. Which, we know now, would have been found by that endoscopy at 4. You are blessed to have discovered it early, really you are. I understand, it doesn't always feel like it.

    At 16, just last week at school a girl my son only knows by name brought birthday cake to the high school cafeteria to feed just about everyone within reach. And she produced a bag of gluten-free candy bars, and gave them to my son with a triumphant "for you -- on my birthday, everybody eats". He has been many things, but never outcast because of his health.

    Hang in there


  5. A strict gluten-free diet should tell you the things you need to know; I did want to say that my son was dx at 9 and has had something like 6 'scopes (I honestly have lost track). While it is alarming to contemplate, it is not so awful that if you ended up having to go there, you should panic. He sailed through them all.

    Also, grandpa has every right to his crumb-ridden butter. You can't be successful with every battle, or every person. Threatening to not let her visit (stay over? or just visit?) is probably not a battle you can win. Better, perhaps, to bring your food. It shows you are serious without making it everyone else's job to be serious. Or maybe, you teach her how to take care of herself when she's out and about -- now there's a life skill she'll really love you for teaching her!


  6. We planned a whole trip to the NH seacoast area (I have family there) to visit Anello's in Portsmouth, but after the 2 hr. drive and finding a parking spot, it was closed. We were dumbfounded, as were the FIVE other people who arrive in the time we stood there, re-checking the posted hours and trying the door. GRRRRRRRRR


  7. Well, that was wonderful! We went down to breakfast and I asked at the desk, who sent me to the manager (turned out he helps with the breakfast every day). They had plated and covered a set of blueberry muffins and cinnamon scones (which were HUGE), offered a take-out box for what wasn't eaten. It was great -- I only wished they had saved the wrapper so I could assure my son they were really gluten-free! They went out the night before to a gluten-free bakery in a nearby town off Rt. 7. Yay!! Success!!


  8. We are staying tonight at Homewood Suites outside Albany NY; a Hilton property. I made the reservation online and in the comment box asked if their famed breakfast buffet ever included gluten-free items (we once stayed at a hotel that did, so now I ask) . This morning, the kitchen manager called and asked did my celiacs have any preference as to flavor of pastry or donuts, they were making a trip to the local health food store to pick up some gluten free items for us! How cool is that! I will let you all know how it goes...


  9. Here's another angle to add in: there will always be difficult teachers and/or difficult students. Certainly we all try to avoid bad matches with kids/teachers, and that's cool. But another thing to do, apart from 504's and vigilance, is teach your child to advocate for themselves. Model the words of polite, firm, compliance to a gluten-free diet, even with adults who insist they know better. My son knew that in any awkward teacher/student interaction, we would take his side on food related issues, but we also expect him to negotiate and educate. (He was dx in 4th and is now a sophomore in HS). But little kids also need to know that when Mr B is mad because you turn down the treat, that Mom will be cool.

    With schools, more than most places, you will get much, much farther with honey than vinegar. Be obvious in your firmness with the guidelines, but friendly and cooperative with people. Go the second mile, and it's easier to demand that first mile from them. Enlist the aid of the teacher and make it plain you understand that while this is utterly essential, it is additional brain power and work for them. Exhausting? Yup. Irritatingly so :) and I work in a school!


  10. I am so impressed that you got GSK to talk to you about the study and the ramifications of their vaccination for your particular child. That is some serious accomplishment. I also share your frustration that oftentimes there are no "definitive" answers, particularly in some areas of medical science, and we are left to our own best judgement. I agree that given your son's set of difficulties, a vaccination utterly bears a serious pile of research. (Not that a complete stranger's opinion is worth a hill of beans)

    I'm sorry to see you leave (we always benefit from lots of pov here, and you may have noticed we don't have a deficit of discussion) but hope your son continues to improve. It is a stressful thing, parenting children with illness. We know all too well that the standard lawsuit answers may not apply, and the only thing between health and illness is sometimes enough digging and research on our part. Whatever you need to do to lower that stress pile, do it. Your sons are lucky, lucky boys.

    joanna


  11. to the original poster (now, that sounds odd, doesn't it)

    don't apologize for being wrong about MSG; early on I was convinced caramel coloring was toxic, only to be corrected, eventually. We've all been there. I apologize if my emphasis was mistaken for irritation (I meant only to sound really really certain; not really really annoyed!)

    did Smith-Kline say their vaccine glutaldehyde had increased reactions? Or was it (the information) from another source? I honestly find that interesting -- if only that someone actually got a Giant Pharmaceutical to respond directly to a direct info request.

    don't leave! we're nice people :) if you just imagine voices with the posts, sometimes they sound less snarky and more like our friends' when they are keeping us honest.


  12. MSG does not have gluten in it. If you need corroboration, check any of the major gluten-free listings, or support groups. Neither does the other ingredient listed. Where does your confirmation come from, and in what form (written, or word-of-mouth?) I'd be interested in seeing where this came from :)

    As a parent of an immunesuppressed child, and friend to many transplants, I implore you to consider the complete ramifications of not immunizing someone. For example -- chicken pox. Typically contagious before symptoms present. Immunesup. children are not vaccinated against it, since it is a live vaccine, and contracting chicken pox can lead to life-threatening illness (both from the pox, and the complications such as lymphoproliferative disease and megacytovirus -- I know I spelled that wrong!)

    If you are interested in vaccine research, immunology, and credible risks to your child's health (pull the carpet out, get the vaccines) backed up by more than anedoctal incidents, I recommend The Autoimmune Epidemic


  13. My son took a prescription zinc liquid (it was pink, and tasted "not bad") as well as an ordinary multi (gluten-free of course, but it was just some regular multi, I can't remember if it had zinc or not but if it were as easy as that, I imagine he wouldn't have been on straight zinc too). He was on the zinc for the 3 months he was hospitalized, plus the 6 months after. Now he just chews VitaBalls and eats almonds (he's magnesium deficient, for other reasons)

    Dosage would vary considerably based on weight, and I don't recall what it was. Your doctor ought to be able to help you with this. And as with all things, each patient is different. My husband was dx AFTER my son, and was 40 years old and 6'1". You just can never tell...

    joanna


  14. I'm always looking for this thread....here's my son's story in a nutshell:

    dx at 9, already very small and not slow-growing, more like non-growing

    hospitalized , having fallen off the growth chart completely for weight, and in the 5th for height

    subsequently put on gluten-free diet PLUS zinc (you have to have it to grow, newly dx kids are often seriously deficient) and iron and a multi

    grew about 5 inches the first year of gluten-free life, gained about 40 pounds. Honest. (But he was life-threateningly underweight, so that still was a little less than average weight, all told)

    He is now nearly 16. In the 50th percentile for weight, in the 80th percentile for height. He is going to top out at about 5'11" -- shorter than his 6'1" dad and 6'3" brother, but taller than 5"4" me and that's all that matters to a teenage boy :) Do not despair, and be patient! But if he was "programmed" at birth to be average or tall, there's no reason to think that celiac has permanently stopped his growth (and if he is short, well, maybe that's what he was meant to be)


  15. Prometheus is not the only lab that can do Celiac panels -- those are common tests that have to be ordered by your doctor, but most any lab can have those processed/run with a regular blood draw. Just wanted to clear that one up~

    Also -- what you often read is that studies show a correlation between early introduction of "the big 7" allergens and food allergies. This is statistically a link, but remember that is a statistic over a large group. So while it is true for the group, there's absolutely no way to know if it is true for a single individual. If you have a very strong family history of strong allergies, doctors will sometimes recommend waiting to introduce egg, peanut, etc -- but that is no guarantee.

    Immune system malfunctions require many things to activate, and no one is certain what combination will flip the switch in a particular person. Certainly a genetic test will give you a piece of that puzzle, but there's no way to "avoid" celiac disease. Your thoughts about the genetic marker are right on -- if he doesn't even have it, why put him through a biopsy, and if he does, why bother with one instead of just putting him gluten-free too.


  16. Hmm... My son was dx @ 9 (he's almost 16 now).....

    Your son is only 7. No matter how much it appears he "understands" he can't have gluten, it will never be that easy, any moreso than getting him to clean his room, do his homework, or brush his teeth. As a child, he will make poor choices. Often! It's not been 1 year. He may not have yet internalized that this is a forever change. He may likely have grief and anger when he realizes it :(

    He may be testing your resolve ("did they really mean it? is a little okay?")

    I would:

    1. Talk to the school/teacher/lunch aide. Schmooze and plead and emphasize his illness. This is as serious as anaphylaxis, just not as dramatic. Enlist their aid in policing him. Yup, he'll not like that. Tell him that you are prepared to do whatever it takes to keep gluten out of him.

    2. Talk to his teacher, and ID the students who may be enabling the access to gluten. They are only little kids. Some education is in order, and the teacher is the appropriate person. Send his lunch with enough gluten-free yummies for HIM to give to THEM. Boys are power-crazed :)

    3. Tell your son all this. You would never let him play in traffic and "hope" he'd decide to stop. This is a health issue. Imho, never feel sorry for your child. Life is full of toil, problems, and obstacles. Model a positive, certain attitude, not a "poor you, I understand life is hell without Cheerios" attitude (and I'm not saying you are -- just that it's easy to slide there) It tends to give teens and children tacit permission to eat poison.

    And lastly, mom to mom: Try not to take it personally. He's not doing it to make you miserable, or drive you nuts. ((*sigh* that comes later) Try to be matter-of-fact and address things age-appropriately as you do other safety issues. But it's okay to stand at an emotional distance, so to speak. This is ONE part of a WHOLE life, and like everything else, there will be ups and downs. You are a good mom, or you wouldn't care. You wouldn't have taken on gluten-free patrol as a second job. Hang in there!

    joanna


  17. Well, that must have been scary for all of you! I would not biopsy a 6 month old. Celiac testing on children under about 2, conventional wisdom would say, is so inconclusive as to not really be helpful. (You aren't likely to get a "yes" or "no" definitive answer). Enterolab, as someone has mentioned, does not give you a definitive answer either. (Some people think the world of the place, however)

    I would, though, put both your kids on gluten free diets and see what happens. Remember that there is no "mostly" gluten free diet that is effective -- it's completely gluten-free, or don't bother. The reaction seems really extreme to me, so maybe there's more than just celiac going on. (On the other hand, I am not a doctor, nor do I play one on TV!) Celiac definitely runs in families and it's worth a try. You're a good mom for working on an answer, hang in there


  18. I'm the mom of two aged-out Scouts and one thing to consider is the stoves. The risk of cc is enormous (has anyone seen Scouts "clean" stoves?) and we just bought our son his own stove and created his own patrol kit (kitchen kit). Depending on how your troop operates, that may solve some of your problems. Foil packs are great, IF your son will eat the contents.

    Foodwise, another thing to realize is that Scouts are lousy cooks. They will burn, maim, mutilate and otherwise mangle a perfectly simple meal -- sigh---part of the learning process! Again, this varies from troop to troop. So send indestructible stuff, and energy bars to make up the gap of "well, that quesadilla fell in the leaves" or "John set fire to my tortillas" or "Mr. Emerson put crackers in my chili".

    A company called Harmony House makes dehydrated camping food that is all single-ingredient. Potatoes, beans, broccoli, corn, strawberries, etc....It's great for campers with food issues. It might seem pricey but the indestructible resealable pouches are good for many meals, and they are super simple to use. Find them on the web. This will be important if he plans to backpack :)

    Have fun! Scouting is a great program!


  19. Ahhh, isn't this a problem? Soooo awkward!

    Anyway. Write these people a lovely thank-you note and tell them you are just so sorry, but for the next 6-9 months you are concentrating on a very limited diet because everything seems to be causing a reaction (tell the truth!) but love them for the support. And then give them a list -- a 5-item list -- of what they CAN get you. Say "I so love that you want to help, and I know you are so careful, so here are five no-fail things" And give them a no-brainer list. Or tell them "if you want to help, I'd love a new book to read, or a basket of fresh fruit". Publically pine away for lettuce. Or whatever.

    You have this backwards. It's not your job to make them happy. It's your job to get better. Although we've certainly been in this awkward position! As for the "not believing" -- there's always somebody who won't believe you; turn a blind eye to them. My mom would sometimes fuss about what my son would turn down (and he is picky) as potentially unsafe, and I just said "It's his body. He gets to choose what he puts in it. It's only food, not love. He knows you love him, and he loves you back, just not those cookies" She came around ~

    good luck! hang in there! Your instincts sound great :)


  20. If you want to try another excellent choc. chip recipe, try the food network's site. Alton Brown (host of Good Eats) actually altered his for a show about food substitution. The recipe is called "The Chewy Gluten Free" ---"chewy" is the name of the original cookie -- and it's fabulous. Makes a bunch, no weird ingredients, and they are great. I make them for parties and nobody knows they are gluten free...


  21. Add us in too -- my son was "dx" with JRA about 2 months before his celiac dx. (I cry, thinking of how he limped to the bus stop and we kept trying "better shoes") The phantom/pins/numb pains in his legs did eventually go away as well (although when it's really hot, they seem to reoccur in a less-serious way) A multi-vitamin is sometimes helpful too, I've read it's an absorption issue in the first months/years of gluten-free life (my son has been gluten-free for 5 years now)