test results

I've always been so pleased that the allergy testing has jibed with what i've seen my son reacting to. even if i can't give him the dr.s' medications and i only seem to take him in for confirmation of my own instincts, it's all ended up dovetailing into one cohesive puzzle that i have been able to figure out with the guidance of the testing all of his life. the OCD in me has been satisfied with this. and every single allergy forum and every single allergy parent i've met have all told me this is not usually the case.

almost all of them have found the tests to be highly inaccurate and virtually useless. they've diagnosed and observed many allergies themselves the tests don't pick up and noticed no problems with exposure to things the test said were top allergens. hearing this always made my OCD teeth itch and i've never failed to thank my lucky stars we were not in that category.

well, bring on the membership bumper sticker, because we've now officially joined the club. these new test results are making things as clear as mud for me suddenly. before this latest outbreak, i was able to read my child and guesstimate with a very good amount of accuracy what he was reacting to, and then the tests would almost always support me.

now i can't read him at all, none of his reactions are making sense and the test results on top of it are like getting the japanese instructions to a toy i ordered from france.

here they are, this is everything the RAST test says he is now allergic to, including his old allergies - which have all gone up in severity with the exception of corn, which has gone down a couple of percentage points. (because of the complete removal of it from our diet or just an inaccurate reading? your guess is as good as mine!)

dairy also now appears on the test, whereas before he was having iGe-typical reactions to it since birth -& has been eliminated completely since 7 wks postpartum- but it never registered on allergy tests and now shows up as a severe allergy to every type of dairy they can test for. (this seems like something it got right to me for sure).

dairy
eggs
corn
wheat
soy
peanut
almond
catfish
white beans
navy beans
salmon
coconut (!!!)
pistachio
walnut
buckwheat
barley
oat
rice (!!!)
sesame
lamb
trees
grass
pollen

lamb
dog
cat

we're still waiting to hear on lentils & kidney beans & they don't have a test for black beans. he was allergic to tuna, but isn't anymore - the one and only improvement. (or was it a false positive all along since he nor i have had tuna since before i even conceived him?) he's also now allergic to lamb, but i've never had it in my life and neither has he, so how did he get exposed or sensitized to it?

i've been alternatively freaking out and completely dismissing these results since i got them on monday (today is wednesday) and have finally decided to put them on the back burner and watch and see what i think the usual way we do things: by letting my child show me what he needs.

knowing i was getting these results on monday and deciding chances were very slim he'd be allergic to it, i let elijah off the rice-only diet a little early and gave him some of our beef stroganoff for dinner. (grass fed beef). the next morning he was broken out again, this time on his face, forearms and up his thighs. he also didn't sleep sunday night and was up scratching and whining past 3 am.

when i called for the test results monday morning, i was sure i'd hear beef was now a no-no for him. maybe chicken, too. meanwhile, the little scavenger sneaked the rest of a brother's bowl of the stroganoff again. the rash continued to progress, along with his discomfort. the pics above are from tuesday, where he couldn't stop scratching long enough for me to snap a quick picture. the rash on his face is very fine and doesn't show up well in that lighting, but it's there. (he's wearing size 6-12 month clothes here, at 33 months old).

this was completely disheartening after the vast improvement we'd gotten on the rice-only diet for 4 days. he was almost totally cleared up except for these new pimple-like bumps i can't get off his ankles and tops of his feet ( a new reaction for us completely - he normally progresses to bumps that open into sores after a prolonged rash from corn or dairy -his worst allergies- but he's never had just these bumps sitting in the middle of clear skin like this.

they didn't go away even on the rice-only diet. then i found out he's supposed to be allergic to rice now. but not beef! on the one hand, i simply can't belived that he could be allergic to rice and have improved so much on a rice-only diet, but on the other hand i wonder if that could account for this new reaction of the bumps on the feet.

and on yet another hand (yes, i have 3 hands - i also have eyes in the back of my head -i'm a mother, don't you?), i wonder if he really could be allergic to beef, but the tests aren't showing it. if he's only had rice and beef stroganoff for 5 days straight (and fruit smoothies, which he's never had a problem with - on tests or in person), that is causing this new rash on his face and limbs - which is the precursor to FTT symptoms for us, cessation of sleep and inability to stop scratching constantly.

i took him back in to the allergist yesterday, realizing that we could be standing on the edge of plummeting back to complete misery and panic with a baby who was declining in health, happiness and growth. (on the allergist's scale, he's lost a pound during the last 3 weeks if this prolonged breakout).

the dr. agreed with me that the test results are mystifying. he says the very worst allergen showing up is dog and he'd recommend rehoming the dog. which really took me by surprise because we've been quarantined home more than ever this summer since these new reactions have flared and the baby is constantly tumbling and rolling and trying to ride on the dog (it's a great dane - 140 lbs at 16 months and 37" tall at the shoulders) and i've seen no signs whatsoever of a related reaction. never an itchy eye, never a sneeze, no rashes immediately or a few hours after a romp, nothing. i don't know what kind of dog they use for the allergy testing, but i doubt it's the very minimal dander-producing and shortest- hair- possible great dane! this is one result i discount completely. i wouldn't have seen such drastic improvement by changing his diet if the dog is to blame.

but the dr. and i both agreed it's time for some intervention. we're hoping some corn-free steroids will reset and calm his immune system, so he's calling the compounding pharmacy to ask them to import some corn-free prednisolone from wherever they can, as soon as they can. he also agrees that many of these results may be false because elijah is so flared up and reactive right now. he said it would be more accurate to wait until everything has calmed down and we've reattained baseline and then do a skin test to confirm these results.

in the meantime, i'm using a topical steroid cream and trying the periactin tablets again (microcrystaline cellulose being the sole corn-derived ingredient, and a very small component of the pill overall -we are hoping if given alone, it won't be a problem) and returning to our normally restricted diet with added caution toward beans and lentils for now.

meanwhile our allergist also said that his hands are really tied with this corn allergy limiting his ability to offer medications to help clear 'lou up, so he is referring us to a specialist in pediatric allergy & immunity at university of michigan. this specialist reportedly does study groups and papers on severe cases like 'lou regularly and may have a special interest and base of knowledge for us. our dr. did a phone consultation with him and we're hoping to get in sooner than his next september opening.

he also recommends we see a dietician specializing in multiple food allergies at children's hospital in detroit. the last one we saw out of beaumont really didn't know about the extent of corn in the average diet and i taught her more than she taught me.

i also find that they don't have the ability, training or education to calculate or factor in the vital contribution of breastmilk in the older toddler or young child's diet and this is very frustrating for me. i will have to take in some educational facts and materials so i'm better prepared this time. and i have a feeling i'll find my way to optimally feeding him before i even get in to see her, but i always hope i might be led to a new food source i never considered and like to be sure i know exactly how much protein/calcium, etc... a child this age & size really needs.

plus, i admit it, sometime i just like to go in and make them squirm and sweat trying to work out how to possibly feed a kid like this. makes me appreciate my own ingenuity that much more. :-P

overall, i'm feeling greatly heartened and cautiously optimistic. even though he is referring us onward and upward, i feel like our allergist and i are on the same page. i wish i knew what is going on inside my little man that he suddenly had this huge reaction and setback (all those viruses for 3 wks in a row scrambled his immune system?), but i might never get to know that.

in the meantime, our allergist has all the same concerns as me. his skin can heal down the road, none of his reactions are anaphylactic, but if we don't clear up these prolonged ones (going on 8 wks now), he stops growing and begins to lose weight and have the quality of life of a starving, flea-ridden alley kitten.

i feel better having a plan and thinking there might be an expert out there that's dealt with this before. sometimes this skinny scrap of gristle i've fought so hard to nourish for almost 3 yrs now feels so insubstantial and slight, that when he begins losing weight, i go right to panic mode. at just over 21 lbs with so many allergies, i have this irrational fear that it wouldn't take long for him to just completely melt away!