post steroid & dietician update

it has been nearly a month since 'lou finished the 7 day course of corn-free steroids (prednisolone) and antihistamine (cyproheptadine) on july 29, 2010. i am amazed and extremely gratified to update that this entire 3 weeks, he's been off both medications and remained almost totally clear and baseline-ish!

i am left assuming that either:
a. the steroids and antihistamine did their magic and reset his immune system, which was just in over-reaction mode from fighting off all the viruses we'd had in the house when this all started
b. he truly had become allergic to the beans and lentils that were such a staple in our diet and eliminating them as i've done has cleared up the reactions.

if it's a., maybe most (or all?) of those new positives on the RAST test are false...
if it's b., maybe all but the beans and lentils are false...

either way, we still aren't having any luck getting in to the specialist at u of m any earlier than late september, so i am wondering if i should call our local allergist back and see if he thinks we should do the more accurate skin test and recheck those new allergies. wouldn't it be wonderful if they truly weren't a problem? especially if we could have lentils back, which i'm not going to try feeding him until we retest, as they scored pretty high as an allergen for him.

any way it turns out, we are overjoyed to have our happy, healthy little hobgoblin back. he laughs and plays all day again, he rides his big brothers' impossibly oversized scooters around the neighborhood like an imp of satan himself - causing concerned and amazed neighbors to gawk and gasp.

as for the dietician appointment i was so hopeful and excited about, it ended up being somewhat of a draw.

she was a very warm, concerned and professional woman who took an amazing amount of time with us, but it became obvious right away that she hadn't dealt with anyone with corn allergy as severe as 'lou's. many of her initial suggestions (back to neocate) were simply not possible or have already been tried (or both!) for 'lou, so we spent a lot of time backtracking and explaining why that already hasn't worked for us.

she suspects that 'lou has EE and suggested we do the biopsies to find out for sure... but as long as we're already doing the recommended treatment for EE (allergen elimination diet, steroids as needed), i don't see the point in subjecting him (or us!) to an invasive and painful medical procedure. not to mention trying to find out if there was corn in the IV's and anaesthesia he'd be getting and how to get some without it!

like most of the doctors we've worked with, she also simply wasn't aware of what terms really denote corn in a product. she wanted us to give him (store-bought) 100% juice. i told her it all contains corn. she was very surprised to learn that citric acid, ascorbic acid and vitamin c itself are all from corn. she said to me, "you're teaching me about this issue, you should write a book."

she was *very* helpful about other things i didn't know, however. she gave me a form you can use to write off the expense of a specialized diet like ours on your tax forms. she also wrote me a wonderful letter to submit to our insurance company, asking them to reimburse us for the cost of this consultation and explaining why she felt it was a necessary medical consultation for 'lou. she also assured me she'd be more than happy to offer me future phone consults when i had specific questions or needs about his diet.

she looked over his test results and agreed that we should cut out the beans and lentils first and foremost. she didn't think it would be healthy to raise a child on meats, fruits and veggies alone for very long, so she recommended we keep trying rice and hope it was a false positive. she didn't love the saturated fats in coconut oil and milk, but i'm not as worried about them while he's still underweight. she also pointed out that his dog allergy result was the highest of all and twice what hers is , and she can't be around them at all.

this renewed my fears about having to get rid of our beloved great dane and i dreaded 'lou finishing the medications and continuing to break out and lose weight. i planned to go visit a dogless friend out of town if this were the case, while maintaining the identical diet. if he cleared up there, i'd know for sure this was from the dog - although the pattern we've been dealing with since june is a typical food allergy pattern.

he did continue to have small breakthrough bumps while on the meds, so i was sure we would return to full-blown misery status when the regimen of meds was completed.

however, he's doing beautifully off all the meds and we haven't changed a thing about his exposure to the dog (which is unrestricted). we did visit a friend last week with a siberian husky and by the time we left his house, 'lou's legs and forearms were bright red and he was scratching incessantly. it looked like a sunburn, not actual bumps or sores like he typically has.

i showered him when we got home and went to bed. the next morning it was 100% cleared up. so i feel reassured and confident that he *is* very allergic to dogs in general, but not our breed so much (great dane). maybe there's truth to the theory that allergic pet owners can build up an immunity to their own pet due to the constant exposure or maybe there's truth to the theory that short hair breeds are less allergenic and retain less dander in their coat.

either way, once again i've got something to be extremely grateful about! i continue to keep socks on him constantly to protect his very vulnerable ankles from things like grass and dog hair. i continue to slather him in raw, organic shea butter if he looks irritated, red or itchy anywhere. i continue with the cod liver oil and medical grade, allergen-free probiotics to support his gut health and essential fatty acids. i continue to line his nose with aquaphor as a barrier to allergens via the mucous membranes - but beyond that, he is currently living like a normal little boy on a very restricted diet and i am determined to spend my time not taking this for granted!

i'm also entertaining the thought of taking the encouragement and advice i seem to get almost daily now and starting to write about my thoughts and experiences on trying to parent a severe multiple allergy child naturally in an unnatural world. whether or not it will turn into a book remains to be seen, but i love the brainstorming and new questions i'm coming up with during the process and it's helping me to formulate my own ideas about why this might be happening along the way.


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