how do you say, 'relapse' in pig latin?



we've been at baseline for a wonderful 9ish months until about 6 wks ago. lou is 2 3/4 and was born with 100% blood for stools & losing weight for his 1st 7 wks until we eliminated dairy completely. he doesn't come up allergic to it on the skin or RAST tests, but any accidental exposure to traces of goat's or cow dairy causes an immediate reaction of full torso hives & itching that can last for days. he has gone on to become allergic on both skin and RAST tests to: egg, corn, soy, wheat, peanuts, almonds, catfish, tuna, cats, dog - and without a test for it, he also is allergic to all commercial laundry detergents. we've eliminated all of these things 100%, been eating the same safe things over and over for over 2 yrs now and finally reached that holy grail of allergyworld - baseline.

corn and dairy definitely seem to be his worst allergies. soy and wheat are his least. his allergist keeps telling me things like neocate supplemental powdered nutritional additives are based on corn, but it's so processed out, it doesn't even resemble corn in any way any more and would be technically impossible to react to. i've had 2 different allergists tell me this and i've tried it on 6 separate occasions, each time w/ the same result: full flare up and break out in typical corn reaction pattern. i've had the same results w/ the antihistamine 'atarax' which has less corn than any other i've been able to find and which the allergist said shouldn't be enough to cause a problem for any corn allergic child. so we've learned the hard way there is going to be no pharmacological help for us and to live by the old adage, 'an ounce of prevention is worth a pound of cure.'

i've been through every stage of bargaining and denial throughout this almost 3 yr process - all at my child's expense. i've questioned myself and convinced myself previous reactions to medications or supplements could have been coincidence or my imagination - i've repeatedly tried giving him things that harm him, in the hopes that it will help. i've seen myself through others' eyes and wondered if i've gotten so used to micromanaging every aspect of every crumb he eats, that now i've become obsessed and militant to the point that i think it's worse than it is. am i developing a munchausen-by-proxy-like fixation on my baby having these food allergies worse than he really does? it's thinking like this that makes me give in and try the things the dr. says really shouldn't cause a reaction - time and again i've squashed my own instincts down and done it and watched as it either didn't help, or actually made things worse.

i've read everything i can find on the subject of corn allergy (and there's not much!) and i've met all the other corn allergy people i can and i've gone to the best local doctors and i'm left with the realization that there just isn't a lot of info out there about cases like this, so i'm sort of on my own here.

one thing is certain, since cutting out every single trace of corn and his other food allergens, we reached baseline. he's been growing and gaining and thriving and looking almost normal. (no huge rings under the eyes, no longer starved looking and as scrawny, not all red and blotchy and broken out, etc...) only another food allergy parent can understand the enormous relief of having a former 'failure to thrive' baby suddenly begin growing and gaining and sleeping at night and living a normal, active, happy life - it's been heaven - even with all the restrictions and hard work to maintain the restricted diet. i would do anything i had to, to keep him that happy and healthy.

6 wks ago, we got a bug in the house. just a cough/sore throat kind of thing, but as we've found out with this multiple allergy kid, a virus of any kind triggers a full-blown allergy response. so i was waiting it out and squashing down the usual panic that comes when you watch baseline slipping away. he stops sleeping as much, he itches constantly, a rash breaks out all over his body, but especially his extremities - that begins to turn into little open sores everywhere after a week or so... which i then have to patch up with neosporin every night because God forbid he get an infection since there are no antibiotics made without corn.

he gets huge dark rings around his eyes, he cries and whines constantly and all he wants to do is nurse. it's hard to even manage to cook his meals when he's in reaction mode, let alone keep up with the needs of our other 4 young kids. the stress level for the entire family goes up 10 notches. if i happen to go see my own dr. during a reaction phase (like i did today), my blood pressure is always significantly higher - and normally it's a perfect 120/80!

so the cold in our house morphed into Fifth Disease for all 4 of the other kids. since 'lou was already so broken out, it was hard to tell if he actually got it, but i think he did. this marked another 2 wks of waiting for him to go through an outbreak pattern - though he'd never really cleared up from the first one. i started to wonder how i'd know if this was really just a reactionary outbreak to the viruses and not a new food allergy, but reminded myself he always clears up a week or two after the illnesses. well, we barely got a week- long break between the Fifth's and stomach flu descending upon 3 of the kids. Before i knew it, he'd been a miserable mess for almost a month that i kept chalking up to a virus being in the house. after giving it the 2 weeks post-illnesses and watching him get worse instead of better, we went to the allergist.

we got a topical steroid cream that basically burned his skin to the point of no longer being able to use even his gentlest soap on him. i tried all my normal, natural tricks like slathering on the raw shea butter w/ long layers, going to the pool, not going to the pool, using the a/c and sealing up the house, not using it and letting his environment be hot and humid, showering him daily, not showering him for days - nothing worked.

i went back to the allergist and he agreed we seem to be back at square one. 'lou somehow lost a pound according to the allergist's scale during all this. he's now broken out in areas he never normally breaks out in - which pretty much means it's over every square inch of his body by now. he doesn't stop itching for more than a minute or 2. we suspect a new food allergy and took him to the hospital to test (RAST) for meats, grains and beans and lentils as well as to check his numbers for most of his previous allergies. this test always seems to have been pretty accurate for us in the past, i'm hoping for a quick answer like chicken allergy (which we eat a lot of and what do they eat? corn. so this would make sense to me and i'd be happy to eliminate it if it helps my poor guy). we should have the results in about another week.

in the meantime lies my quandary. the allergist says it's well nigh time to do an oral steroid and antihistamine. i can see that he's getting much worse and am terrified he's going to go septic from all the broken skin and constant scratching. but there are no medications made without corn. with atarax, we were lucky to get 2 days of slight relief before new rashes started breaking out in other areas and i had to discontinue it.

the allergist insisted we have to get him on oral steroids and recommended i try a compounding pharmacy. i found 4 in our area: one said it was impossible and they couldn't help me, one was temporarily closed due to a family emergency, one just went out of business and the other was interested and helpful and will let me know by tomorrow after they've contacted their own distributor. in the meantime, we had to try to get him on something now. so i took the prescription from the dr. for orapred, with dread in my heart. i called to check on the ingredients and found out that the way my pharmacy makes it, the corn it contains is:
alcohol: 1.8%
glycerin
sorbitol
sucrose

just to compare, atarax (an antihistamine that is stronger than benadryl) contains:
alcohol: .5%
citric acid
propylene glycol

when i called to ask about picking up the prescription, the pharmacy called it, 'prelone' instead of 'orapred'. i didn't think much of the fact that they'd switched us to a generic, but just before i made the drive to pick it up, i called to ask for the ingredients on a whim. the corn in this prescription is:
alcohol: 5%
artificial flavor
glycerin
propylene glycol
sucrose

realizing it was a lot more corn, i called my allergist - who of course wasn't in for the day. i called my normal pediatrician to see if she could use her pull to help contact a compounding pharmacy and get us a prescription without corn any faster, but she never called me back at all. (oh how i miss dr. cheryl - who called from her own cell phone & home on her own time, if need be and took my instincts seriously!) i called several more compounding pharmacies out of the area, to no avail.

i finally got the allergist's office to contact him on his day off to ask if i should really do these medications now instead of waiting another day or 2 for the compounding pharmacy to let me know if they can make something for us. he reiterated that he didn't feel the orapred was enough corn to cause a reaction and that he 'd also like 'lou to take an antihistamine called 'periactin' that should help stimulate his appetite and might help with the weight loss. periactin, in tablet form contains the following corn:
microcrystaline cellulose.

i got both prescriptions filled and dosed him with both just after dinner. he's been sleeping fitfully -in between scratching and nursing - for about 4-5 hours a night through all of this. the medications said they cause drowsiness. true to form for my kids with their crazy fast metabolisms, it made him hyper. he climbed the walls until he fell asleep abruptly at about 10 pm. at midnight, he woke up scratching furiously and asking to nurse. he hasn't been back to sleep since and it's 6am now.

i'm at my wit's end with this issue. i live in constant fear that he's going to get some major illness or be in some kind of accident and nobody is going to take me seriously about his corn allergy and decide to give him whatever they see fit. and then whatever issue he is already having is going to be made worse by his allergy reactions. but then when he really does get this bad, i tell myself it's worth the risk, we have to try the medication to make him better, maybe after x amount of time off corn and all this breastfeeding and probiotics and gut healing and optimum diet, he won't be as allergic as before... and every. single. time. i'm wrong and it just makes things worse.

i wish the dr.s could see him at home. we didn't even get 3 hours of sleep last night. he's sitting on his chair right now, watching a dvr'ed episode of 'go, diego, go' so i could have a minute with him off my boobs. i sneaked in and took a picture at 5 am. he's got his legs straight up in the air, an intent and pained expression on his face as he claws away at his ankles. he never stops scratching. it's like his actual bones itch - if he's cleared up and gets corn, he itches even before the rash comes. within 2-6 hrs of getting corn, it's like his flesh is crawling just under the skin... and then the rash comes about a day or less after the itching starts and the rash can last for weeks.

every fiber of my being is yammering that i just gave him 5 sources of corn after living for almost 2 yrs 100% corn free. every instinct is telling me to throw the medicine out and not allow it near him again. part of me knows the dr.s can't really know how to properly treat his issues because they don't even have the tools to work with kids like him. this is a brand new problem they've never dealt with before. it's like i'm coming into the office and telling them he only speaks pig latin, will they please only speak pig latin to us from now on?

i actually asked the nurse if she thinks the dr. remembers for sure who we are and that he is the extremely corn allergic toddler when she told me he wanted to add another medication with corn to his prescription. i had to remind her that this is the child the dr. said shouldn't react to neocate. she said he remembers perfectly, and still thinks we need to do these medicines. they don't even know all the terms for corn, or if a compounding pharmacy can make medicines without corn - i'm doing all the research myself and educating *them* as we go along. and letting them experiment on my child in the process. i really like this allergy dr. - even went to another one for a 2nd opinion and came back to him- but i just think my son is a patient that speaks only pig latin and the dr. didn't take any courses on pig latin. but have any dr.s?

can there really not be a dr. out there that's experienced/educated in this particular problem? is it because it's still such a minority of patients dealing with it? is it because they expect them to outgrow it quickly enough that a lot of research and alternatives aren't warranted? is it because corn is just so cheap and easy and so few people have a problem with it, nobody is going to change things for the few that do? is it because this tends to be a skin-reaction problem or GI tract allergy and not an anaphylactic or life-threatening one? my response to that is that it kinda feels like a very slow anaphylaxis when you watch your child stop growing and actually start losing weight, stop sleeping and have the quality of life of a bedridden invalid that's hooked up to a boob instead of an IV.

i just don't understand how there can't be a dr. or expert out there on this issue that my own dr.s can look up. i can't have the first or the only child dealing with this. why isn't there information being circulated about kids becoming allergic to the most commonly used thing in our foods and medications? why aren't alternatives being made for these kids? why isn't it any of my dr.s priorities to keep corn away from him at any cost, like it's mine? why aren't they demanding corn-free medicines for their patients and/or helping those patients find some? the attitude i'm running into is, 'well, here's what i recommend/prescribe and if you want to do it corn-free, you're on your own, good luck!' this isn't a fad diet choice, this is a bona fide, documented, tested-postive-for ALLERGY. would you give me penicillin for my very sick but penicillin allergic child and then tell me to go try find some other rare and hard-to-find alternative to it on my own?!

:::deep breaths::: for now, i'm going to keep juggling the balancing act. i have to try to keep him on the steroids to heal the skin while making sure he doesn't actually get worse skin issues from the corn in them. i have to try to find corn-free options on my own time while taking care of 5 kids. i have to keep cooking his time-consuming meals from scratch and keep a household going on 3 hrs of sleep a night. i have to maintain a cooperative and proactive attitude and outlook when inside i am ranting and raving with frustration that this problem seems to be getting overlooked or discredited to the detriment of my child's health.

even as i type this up to vent my frustration, i am sitting here trying to tell myself that perhaps this time the lack of sleep and increased itching is really from the progression of the underlying original food reaction issue and not the corn i just gave him in the medication. today i will be giving him a full days' dosage - 3 times today i will give him 5 sources of corn. i'm sitting here thinking, 'surely the good it will do him is going to outweigh the bad. surely the dr. is right, it's barely corn at all, it's so processed into something else!' i'm imagining healed skin and restful sleep and a good appetite. maybe i haven't given it enough time. maybe i'm jumping the gun. maybe i'm crazy and the dr. is right and this is going to fix him right up. yes, while i'm giving him the thing that is basically poisoning him, that we've had confirmed 6 legitimate ways to sunday he's allergic to. ridiculous, isn't it? any time he's gotten an accidental corn exposure (or i've trialed something like the neocate), within 2-6 hrs, he's reacting. after his 1st doses of the medicine last night - by 6 hrs, he was worse. do i really have no common sense? do the dr.s?

i really hope the compounding pharmacy comes through for me tomorrow. i am going to try to find any information on dr.s or hospitals or centers in the area that might have an expert in corn allergy - the information and resources just can't be this limited.

on a positive note, i never knew 'sesame street' is on at 5 am on sprout!


7 comments:

Kim said...

Just wanted to pop in to say hello and good for you for standing up and taking charge.

We've been on a 'special diet' in our house for 8 years now. After 3 years of being in and out of hosp's and doc's offices, the diet has kept us out of them. No meds, no more testing (we gave up)... just a good, conscientious diet.

It galls me to see families with 3 cases of pop and 4 bags of cookies in their grocery carts. Not that we're perfect, by any means. We make mistakes and get lazy sometimes too. But we re-evaluate what we're doing and then make the effort to pull up our bootstraps and get back on track.

The rewards, for every person in our family, has been better health... bar none.

jack said...

kim , i couldn't agree more. i put the whole family on this diet instead of trying to cook separately for them and then the baby and i... and i cannot believe how much healthier they are. we still catch bugs, but they aren't as bad and don't last as long, the ear infections have all but vanished, the constipation/bowel issues have totally vanished.

i just took all 5 to the dentist this wk and he was astounded that not only was there not a single cavity among them, but they also do not have plaque anymore since going on this diet! he makes no extra money on our big family, poor guy - we don't do fluoride at all, no x-rays and now no more dental work, apparently!

i know it's all worth it health-wise, i just wish my baby didn't have to suffer like this before we have to cut something new out. :-(

Sharon Rosen said...

Hi Jack,

I'm so sorry you are going through this. With my own corn-allergy I go through the same self-doubt/poison cycle and it's awful.

I wish there were more corn-allergy doctors and pharmacists. It's awful we have to go through this alone. We didn't go to medical school, yet we're the ones who have to do the final research. It's terrifying.

I shared this post on the Live Corn Free Facebook page so others with corn allergy will reach out. I saw your request on the foodlab email list so figured I might be able to help that way.

All in all, YOU know better than the doctors. It might be worth trying the prescribed medicines as you are, but if you even think he's getting worse, then you're not seeing things, and he is. I really wish I could be of more help. I hope things improve soon for him and the rest of your family.

Sending you some good vibes...
~ Sharon

jack said...

thanks so much, sharon - it's very reassuring to know i'm not crazy. okay, maybe i am, but it's just coincidental and most likely preexisting to the corn allergy issues! :-P

cori said...

You are not alone in all of this. Your story fits my life so much. I have a 2 year old allergic to milk, eggs, corn, peas, beef and pork and we are always having accidental exposures to corn. Even a tiny amount in a medication will set her off. I have been running into alot of people with corn allergies and I can't help but think that the next time someone does a study on the top allergies corn is going to have moved way up on the list.

Renee F. said...

My heart goes out to you and the little guy! My allergies are wheat gluten, corn, msg, salicylates, dairy, eggs, chicken. I cannot eat corn fed beef, grass fed beef from The Baldwin Farm has become a staple in my household. My boyfriend would like to travel but I cannot figure out a way to go without taking a tractor trailer full of the food I can eat. Obviously eating in a restaurant is out of the question . . .get that poor baby off those medications! Push a corn free water - I drink aquafina by the case. I have found if I get something in my system that I shouldn't have, I can flush my system with water. Good Luck & God Bless!

Nancy Cuevas said...

(((hug))) Poor Lou :( and so sorry to hear all this. You work so hard. Any other mother would just give up and have him on meds all the time. He is lucky to have you as his mother, breastfeeding as long as you do and being as assertive with the doctors as much as you can. Wish I was there to help w/ the kids so you could at least nap to regain some strength and clarity.
<3 always,

~nancy

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