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I’m so sorry to hear the Neocate didn’t work out for ya. If you’re interested there is another brand of Hemp milk that doesn’t contain brown rice syrup. It is called Hemp Bliss. I’ll attach a link and maybe that will work for him. http://www.manitobaharvest.com/cartshop/productview.asp?key=41
Good luck w/the dietician.
Hi Valerie,
So sorry I’ve been out of the loop/thread for a week. We went out of town w/o the kids last weekend (yay!) & then we’ve had 4 appts for Evan this week so I’m literally drowning in catch-up (email, paperwork, lists, etc).
Anyway re: calcium supplement. No, Evan does not get any right now b/c he’s on rice milk & it’s fortified w/ calcium. I would definitely talk w/ the dietician about that…
maybe try to find some child-friendly brands before you go…
http://www.celiac.com/gluten-free/index.php?showtopic=61629
Both the brands discussed (Rhino & Bluebonnet) I’ve heard good things about… & have direct links to them if you’re interested.
Also, here’s a list of calcium-fortified foods (I KNOW your ds can’t have many of these but I”m not sure about some of the others…):
-breastmilk (studies have shown that breastfed babies get plenty of calcium, even if mom doesn’t eat dairy products)
-dark greens: broccoli, spinach, collards, kale, turnips, bok choy, parsley, mustard, dandelion
-tofu and other soy products
-beans: chickpeas/garbanzo beans, navy beans, pinto beans,
-nuts & seeds: sesame seeds, sunflower seeds, almonds, filberts/hazelnuts, cashews, nut butters, tahini, walnuts
-sea vegetables: nori, kombu, wakame, agar-agar
-grains: tapioca, quinoa, tortillas
-seafood/fish: shrimp, salmon with bones, mackerel with bones, sardines with bones
-herbs: borage, lamb’s quarter, wild lettuce, nettles, burdock, yellow dock
-calcium-fortified orange juice
-Total cereal (calcium fortified)
-Gerber Graduate juices (calcium fortified)
-Sunny Delight Calcium orange drink (calcium fortified)
-Rice milk (calcium fortified)
As far as the biopsies are concerned, I get what they’re saying (re: seeing if his reactions are GI related or *just* -haha- skin & reflux) BUT doesn’t his stool reflect that?! If his stools turn to mucous &/or blood (plus color & odor change) then his intestine/colon is most certainly inflamed so there wouldn’t be any need for looking further… but that’s just my opinion. Also (& I just learned this from the dietician) if you give him foods that he’s severely intolerant to that will most likely ‘kill’ the celia in his intestine, thus causing malabsorption & further affecting his growth… it then takes about 3 months for those celia to ‘grow’ back (ie: recover). Again, just my opinion though.
As far as the celiac testing is concerned, I will say that Evan has some huge red flags for it but since we are NOT going to put him on gluten (or anything he’s intolerant to) b/c of the above mentioned issue (ie: celia dying, affecting growth further, etc) the dietician suggest myself, dh & our parents get the bloodwork done for celiac panel just to get more info. Who knows if that’s accurate &/or if it will tell us anything so I’ll let you know.
We just finished our 1st round (of many-lol) of allergy testing. I honestly was not at all optimistic that we would find any info that we didn’t already know (since I’ve monitored Evan’s food trials like a hawk) BUT I will say it gave us some new info. We did RAST bloodwork, immediate skin prick, & delayed patch testing.
We did the bloodwork a couple weeks ago. Nothing showed up (not surprisingly).
We chose about 12 foods for immediate skin prick.
Then, we chose 5 (from those 12) for the patch (could only fit 6 patches on his back & 1 had to be ‘control’).
The only thing that showed up for immediate skin prick was chicken (VERY surprisingly since I specifically remember – & have it logged – the trial & all was fine for 5 days straight).
For his patch testing (they were put on Monday morning & taken off Wednesday morning) he was positive for milk, soy & wheat… & borderline corn (which was slightly surprising).
Anyway, although I was not at all optimistic about the immediate skin prick or delayed patch I’m glad we did it & glad we got *some* answers. We now will make another list of 10 for immediate & choose 5 of those for patch & go back in another month (I’m staggering his allergist, dietician & GI so I can chat w/ everyone… I also see his general ped about 1x/wk but only b/c he lives around the corner & we see him & his family while we’re playing outside).
I thought I saw on the hemp milk website (the original one that Amber posted) that the unsweetened, original didn’t have any ingredients that would bother your ds (ie: rice or oils). Hmm… I’ll have to look again. Okay, just looked & I *think* he could have it…
here’s the link:http://www.worldpantry.com/cgi-bin/ncommerce3/ProductDisplay?prmenbr=655972&prrfnbr=2422465Have you considered putting your little guy on a PPI like Prevacid to see if it helps him?! Like I said before (I think)… Evan was fine w/o any reflux meds (Axid, as needed but rarely) as long as I was exclusively nursing him w/ a VERY strict diet… but when he started solids (not a whole lot -but even just squash & apples) he did need to be put back on meds… which I’m totally fine with. Just a thought!
So sorry the Neocate trial failed & hang in there – you’re doing great!
ETA: no clue why my links aren’t showing up as click-able – sorry!
eta: sorry to edit your post
but I tried to make the links work- they work now
hellbennt2009-09-25 21:47:11
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