I’ve procrastinated too long to give the entire back story. Suffice to say, Nik is starting to show signs of developing a significant food allergy to legumes. You know — peanuts, green beans, lentils, peas, chick peas (garbanzos), guar, soy —lots of healthy sources of fiber and protein for a little guy who doesn’t yet actually bite and chew food. We’ve stopped giving him anything but fresh, plain, organic food so far in an effort to mitigate the rashes and gastric distress that seem to have popped up out of nowhere. Except, the odd thing is we think maybe they’ve been there all along and we didn’t know it. The clawing at an ear that’s not infected; the rubbing of his head and poking at his eyes in spite of being on medication to stop migraines. The gastric distress which causes him to wake screaming in the middle of the night every night —in spite of the fact that his reflux is well under control.
Nik’s modus operandi has always been to give us physical clues to follow. If we are too slow to pick up on them, his body always seems to know just when to kick it up a notch or two to really get our attention. At least, it sure seems that way every time it happens. We’ve gotten pretty good about paying attention and trying to decipher his messages before they reach a crisis stage. We don’t really have any choice; the one time we didn’t pick up on his cues for so long we almost lost him.
I feel like I am teetering on the razor’s edge all the time. Nik shows so many signs of being “normal and healthy” but the possibility of slipping off, of developing a major medical issue, is always just a hair’s breadth away. If I relax my guard, well…I just can’t. It’s the thing that keeps me so in tune to his every shiver and sigh —even in the twilight of sleep. Some people hear “food allergies” and think “What’s the big deal? Just don’t give him those foods.” In Nik’s case it’s not that simple right now.
This new development, if it really is an allergy —and wouldn’t it be nice to finally have a freaking answer— has provided a real conundrum. Where Nik is totally tube dependent right now, we must continue to give him formula. In an effort to help relieve some of Nik’s symptoms, we’ve recently stopped feeding him anything by mouth. But his formula contains soybean oil, and green beans, and pea protein. Oh, and guar (also a legume) in the form of the added fiber (think Benefiber. Yep, legume based.). Even with the absence of food —and now that we are hyper vigilant in watching for signs —we can see the changes in Nik immediately after he gets a tube feeding. The red ears, the runny nose, the clawing at his ear, tugging at his clothing —it all ramps up again. It’s the worst after dinner —his largest meal of the day.
Common belief holds that someone allergic to soy should be able to handle soy oil because the most of the sixteen different proteins are eliminated in the processing. Um, someone needs to explain that to Nik’s poor little body. He had a terrible reaction to one small cheez-it cracker yesterday at play group. (N.B. Nik has not exhibited any signs of allergic reactions to wheat or dairy.) The offending ingredient? Soybean oil.
The immediate reaction was small in and of itself but it tipped the balance just enough that Nik was miserable for the rest of the day —the screaming, crying, clawing at his ear, hitting himself in the head which have become so disturbingly familiar to us.
We saw the pediatrician yesterday to rule out an ear infection; we were all certain it wasn’t that but had to know before we could proceed down other avenues. We now have a referral to an allergist and a new prescription antihistamine, Atarax. Nik can’t take Benadryl because he has a paradox response; he’s up for hours and it gives him very little relief. Atarax is actually used for anti-anxiety as well and works differently than Benadryl. Where Benadryl works on peripheral histamine receptors (think skin and extremities), the Atarax binds to receptors within the GI and respiratory tracts —working more from the inside out than the outside in. Of course, that also means it has a bit stronger effect on the whole nervous system.
We gave Nik a dose just before dinner. I have to say, it did do wonders to keep the allergic response at bay. But poor Nik conked out at the dinner table and had to be poured into his pajamas and bed! He woke, briefly, about six and a half hours later —but he woke happy and pain-free! We gave him another dose —and a quiet toy to play with —and another half hour later he was out cold for the rest of the night. The drawback is that it knocks him out cold and has some lingering systemic effects. Today, he is off-balance and very subdued. He feels funny and knows it; he’s been very clingy and easily upset. Not a good long-term solution; we fought too hard to get him off of medications that affect him this way to go back. Oh, and let’s not forget the potential effects of central nervous system depressants on respiration; not a good fit for a child with a chronic lung disease.
So, here we sit, betwixt and between. We have theories but not enough evidence, some evidence that doesn’t fit, and a little boy who keeps trying to tell us what he needs but cannot make himself understood.