happy update
(ha, i just looked over this again and realized they're also before and after pictures of his very 1st ever haircut!)
he does still have a couple pimple-like bumps on his ankles and he did continue to get rashy-like marks under his armpits and on his buttocks - which are not typical reaction patterns for him - but they were not swollen, red or itchy, they just appeared as subdued spots, almost under the skin. i am hoping this is a sign the antihistamine is truly doing its job and stopping the itching and swelling from new allergic reactions.
i'm still waiting for the corn-free steroid (and beginning to wonder if we will still need it!) to be located by the compounding pharmacy. their usual supplier overseas seems to be slow in responding to the unusual request, so they may look into finding a new one if they don't hear back soon. the situation is no longer so urgent now that 'lou is clearing up so well, but this is definitely an option i'd like to know all about for any future serious reactions like this.
we will be seeing the dietician at children's hospital on the 28th of july (today is the 20th) and i was already planning ahead and thinking how frustrating it was going to be to bombard her with our issues only to be told she'd have to research dietary options and concerns for someone as restricted as 'lou - and then make another appointment for us to come back and discuss it. it's not easy for us to get to appointments like these with 5 kids, no babysitter and hubby's crazy work schedule.
as if she read my mind, the dietician called me to ask what his specific allergies were so she could be better prepared for our meeting, as the receptionist had left her a note regarding our appointment that 'lou had many restrictions. we ended up talking for about 45 minutes and i have to say that something i was almost dreading and really going through the motions for my dr.s has turned into something i'm very excited about!
the last dietician we saw was very uninformed about the benefits of breastfeeding a toddler and had no idea how to factor or quantify it into his daily caloric total, so she simply discounted it completely! this was very distressing for me, because there is research-based evidence showing that women who breastfeed for 18 months or longer have fatter milk than women who breastfeed for a shorter duration. there is research-based evidence showing that women who breastfeed more than one child at a time also have fatter milk. if i have been breastfeeding for 10 years without interruption now, how fat must my milk be? if i was breastfeeding 3 children until he was 6 months old and have been breastfeeding 2 since then and he's almost 3 now, how fat must be the milk he gets? if he nurses 8-12 times a day when he's reactive, how much fat and calories must he be getting from my milk? i think the amount and benefits of human milk in his diet is very significant and was very upset to hear it had to be assigned a value of zero because she didn't know how to give it even the most basic value, mathematically or nutritionally.
she also had no idea what foods really contained corn and which didn't, or what all the terms for corn were. it was a very frustrating experience, to say the least. she was very up to date on gluten-free diets and celiac disease, but corn... not so much.
ever since, i've been doing it myself. we've tested 'lou for anemia and vitamin deficiencies, as well as hormonal and metabolic irregularities and it's all been normal, but i've never known exactly how much of specific minerals and vitamins he should be getting, nor which foods to get them from! i've just been winging it and trying to guesstimate which veggies might be best for which main vitamins and minerals. this new dietician mentioned that his rashes and skin issues could be a symptom of a deficiency in something like thiamine - something i'd be totally clueless about! wouldn't it be wonderful if this was all just something as easily fixed as blending some more strawberries or green leafies into his smoothies every day?
whatever we end up finding out, i can't believe how eager i am to have found someone who sounds truly interested and concerned and ready to tackle the problem and brainstorm with me. i didn't even realize how much i feel like i'm on my own in dealing with this until she sat on the phone with me, coming up with ideas and suggestions and really listening to me describe his diet and symptoms over his whole 2 3/4 years so far and asking for this blog address so she can study our menu.
i really get the sense that these dr.s, pharmacists and dieticians intuit that this is an issue they need to learn all they can about. the more we all discuss it, the more it sounds like they agree that corn is not what it used to be and is affecting people in ways it never did before. i think we are all forging very valuable new resources together and i'm so glad to have found such awesome professionals to help me take care of my little guy!
i will update on the dietician appointment and am hoping our journey can help give anyone else dealing with the same thing some ideas.
thank yous
i heard back from morton pharmaceuticals - they make atarax, an antihistamine that has only the following corn-derived ingredients:
alcohol, .5%
citric acid
propylene glycol
it also contains 'liquid sugar', which i suspected must be corn. they have assured me that it is *not* a source of corn, but comes from cane and beet sugars only. that makes atarax the second antihistamine with the least corn, after the adult tablet form of 'periactin', which only has 1: microcrystaline cellulose.
i also found out that physician's compounding pharmacy in bloomfield hills, (michigan) is an absolutely fabulous resource and ally when you have special needs for medications. karen has put up without about 100 phone calls from me and listened patiently to my litany of additive restrictions & concerns. she has searched diligently and today came up with a source outside of our country for totally corn-free periactin and is still tracking down the orapred. they are able to ship the medications right to me and include forms to request our insurance to reimburse us for the cost.
as usual, mary kay at beverly hills pediatrics is always there when i need her and is getting a packet together of all the tests - immune system function & genetic - that we've had done on 'lou as well as a current graph of his growth to bring to the new specialist.
dr. bahrainwalla at royal oak allergy and asthma center also has my gratitude and esteem - especially for opening his mind and listening to 'lou & i, even when it didn't make sense or match his own tests and training. dr.s like that are very hard to find!
i feel very lucky to keep finding such caring and supportive professionals to work with 'lou's concerns - mary kay (and justin!) are the main reasons i stayed with beverly hills pediatrics when dr. cheryl left and dr. bryzik is managing to fill those big shoes, tho i'm sure we're not anybody's choice of a 1st patient! and physician's compounding pharmacy has a grateful and loyal new customer who will be referring any other allergy parents with similar concerns their way!
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
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?
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!
todsay is the 3rd day that 'lou and i have been on the rice-only diet. well, almost. we still have to have our smoothies in the morning. but other than the fruit and flax seeds in that, it's all rice, all the time. and his improvement is drastic and amazing. today his skin has lost the rough, raspy dry flakiness. for 6 wks now, he's been scratching me up like sandpaper with his ankles, wrists and knees. even with having gone to the pool, his skin has returned to shiny smooth baby softness. you can even see the difference in the pics i've posted here.
he still has a few pimple-like bumps, but they are more isolated and not nearly as inflamed and large as they were before. i'm dying to find out what new thing(s) caused this most recent setback, eliminate them and get him completely back to baseline. he just slept for a full night for the 1st time in over a month last night. we should have the results tomorrow or tuesday. i'm hoping for tomorrow before i go into rice toxicity dementia.
i've been ramping up the research efforts about multiple severe allergy kids in general and keep finding references to doing a strict elimination diet temporarily with the goal in mind to trial food back in w/in 3 months at the most. everything says avoiding it for about that long should help the body heal enough to begin tolerating it again after the 'break'.
~so what's different about my child that we've been doing it for 2 yrs now and he's only gotten more allergic?
~if he's really such a totally new and rare kind of case, shouldn't his dr.s want to research and study and learn all they can about such an extreme and fluky example of allergies? shouldn't they be sharing info w/ other experts in the field to learn how to support, educate and advise a patient like this?
questions for the dr. tomorrow !
"where's the beef?"
a thought kept struggling to bob to the surface of my addled, rice-infested brain today. it finally surfaced and i realized: the last time he was this bad (at 11 mos), was when all of his other food allergies were diagnosed (besides the dairy he was born reacting to and the egg he became allergic to at 7 mos). i've been sitting here preparing myself to deal with eliminating chicken... and what if it's really black beans, kidney beans, chicken, turkey and beef? (when he was 11 months, he had a virus and became allergic to: corn, soy, wheat and peanuts).
how on earth do you get protein if you can't have dairy, soy, nuts, meats, or beans? he's still getting human milk protein from my milk, but would that be enough at his age to replace these other sources? i'm not going to worry about this until i have to... but it just keeps bobbing up in my brain like some noxious and malevolent toad in a stagnant pond.
on a positive note, we've only had rice today and one fruit smoothie in the morning and i haven't seen 'lou scratching at all! he slept better last night and got off my boob for a while to play, too! i think :::knock on wood::: this rice-only diet is clearing him up. i also think this shows it's probably not the dog he's allergic to, but something he was eating. of course, i don't know if he will ever poop again... and i am starving 5 minutes after i eat and yet have the belly of a 7 month pregnant woman. i really hope our allergist calls the second he gets our results and doesn't wait until the end of office hours. come to think of it, i may just call and check in myself about those results on monday!
what i'm wondering about today is how there can't be a doctor specializing in these kinds of issues yet. how there can't be corn-free medication options out there. i have so many questions i want answers to that nobody seems to know.
~how do i advocate more effectively for my child's right to have medications he isn't allergic to?
~who dictates what medication options there are, if not the dr.s treating children like 'lou?
~why is he becoming allergic to more and more things if i've eliminated all the allergens and been doing things to heal his gut all his life?
~are other kids like him outgrowing these food allergies? by what age?
~can we import corn-free medications from other parts of the world for kids like this on an as-needed basis?
~can a corn allergy become anaphylactic?
~are children with a history like 'lou's outgrowing these food allergies?
~is it possible that his immune system is also fighting off food proteins and becoming allergic when it fights off prolonged viral exposure?
~if so, would restricting his diet to rice while he's ill, prevent him from 'imprinting' on his foods and becoming newly allergic to foods that were previously safe?
~are children with a history like 'lou's outgrowing these food allergies?
~what kind of dr. would i need to find that was curious and passionate enough to start researching severe corn allergy issues in his spare time and give us more guidance, support and options?
~or is there such an expert out there already that my own dr.s can contact?
~where would i look to find such a specialist?
~are children with a history like 'lou's outgrowing these food allergies?
see if you can guess which question is most urgent to me right now, as i sit here hallucinating about protein, any kind of protein i could sink my teeth into...
corn medicine update - 2nd day
today 'lou's new rash has crept almost to his belly button in the front and his old rash is beginning to redden and crop up with new bumps today. he's beginning to scratch and dig at his ankles again, too. which tells me he's getting enough corn from these meds to start flaring up his primary allergic pattern. which means they're starting to do more harm than good now, so it's time to stop. at least they helped most of the open sores to close and much of the rawness to dry up.
i spoke with the actual owner of the compounding pharmacy today (he also owns the pharmacy we use, which has been fabulous about reading me every single ingredient of every single option we could try and helping me pick the ones w/ the least corn), and once he understood how much corn is really in these meds, he vowed to find me some truly corn-free options, "no matter where he has to go to get it".
which got me thinking after we hung up, other parts of the world don't add corn to everything like we do. if there were a real desperate need for it, if he had to be on steroids long -term, for example, couldn't we get them from somewhere that doesn't use corn? like canada or mexico or norway, or who knows where? i wonder how that works, if a compounding pharmacy can do that. i'm going to ask him when he calls back to tell me if their manufacturer overseas sends the prednisolone with corn already in it.
the allergist also called with the 1st of the test results. he said 'lou's IgE count is at 319. normally it should be around the 25-100 area. but we still don't know *what's* causing him to have such a huge reaction. hopefully we get that answer on monday or tuesday.
in the meantime, i'm assuming it's a new food like beans, meats (i'm betting on chicken) or lentils, possibly grains (please, not rice) and since i have to quit the medicine, i'm going to eat rice only along with him until monday/tuesday, when we hopefully find out what he's actually allergic to now. i'm praying it's not the dog.
his ped also called me back to day and i got the chance to ask her as well as the allergist many of my questions. like why there aren't options for children so allergic to the substance that's in everything. the reply i got was that it's still very rare for anyone to be this sensitive and that neither dr. realized there was so much corn in everything - and that's there's virtually nothing available without it.
i really think when we're being this overexposed to something this mutated and genetically modified, more and more people *are* going to start becoming allergic. how could they not? both dr.s said the exact same thing to me today, "i'm learning from you." they have no idea what options there are, they have no idea what alternatives could be used, they have no idea how or why he's so sensitive he's reacting to corn in such tiny & processed amounts, they have no idea how long 'lou might be like this, they have no idea if an allergy like this can become anaphylactic or always remain isolated to a skin response, no idea if it's lifelong.
it's very scary to realize the people i look to as authorities on the subject have no real experience with it! they both agree that i need to stop the oral steroid now and that going on a rice- only diet to help minimize the reactions seems like the only option until we get some answers. if nothing else, i'm lucky they are very open to listening to me and respecting my observations and instincts.
the more and more i think about this, the more upset i get at how little i knew about the way i ate. it used to be food allergies were only seen in families with a history. a genetic tendency to be allergic to a food that other family members had also had. now it's cropping up everywhere with no family history and nobody knows why.
i think it's from gut damage caused by the way we eat and how our foods are made now. i suspect my son is so particularly sensitive for the simple reason that we got our 1st del taco restaurant a few blocks from my house while i was pregnant with him. i probably ate there 3 or 4 times a week, every chance i could. i had no idea every single thing had several sources of corn in it. corn that is now genetically modified. corn that has been shown to actually alter the dna of rat's gi cells.
what could overexposure to something like that do to a developing fetus? i've been doing everything possible for 2 yrs now to heal his gut damage. completely restricted diet, medical grade corn and allergen free probiotics, breastfeeding, coconut rich recipes, essential fatty acids and good oils... why is he getting more and more allergic? why is he collecting new things to be allergic to and not outgrowing any of the old ones?
nobody can answer these questions because nobody's seen kids like this before. my darkest fear is that, while his gut was being formed, i ruined and warped it by bombarding him with all the gmo's i was eating. that he'll never get over it, that he'll always have problems with food allergies. nobody can even tell me if this is a rational fear, it's such a new issue!
another odd fact i've just realized as i write this blog & reflect (and am wondering if it may be a clue for the dr.s) is this: it seems to me that each time he's become allergic to new things, it was preceded by an illness. a prolonged viral exposure. i would really love to find a group of other parents with multiple food allergy kids - esp corn - and ask them if they noticed their children cropping up with new food allergies after illnesses. is this typical of multiple allergy people? is it indicative of how they became multiply allergic? could it offer a clue as to how to 'cure' them? i'd love any thoughts or feedback.
what could this mean? that his immune system starts fighting off a virus (he is actually sick much less than my other children - twice now most or all of the others have gotten stomach flu and it hasn't touched him and he rarely gets the sore throats and runny noses when they do) and then gets confused or overstimulated and turns to fighting off foods? if this is so, would it mean his immune system is damaged... or maybe hyperactive...?
i never had a problem with corn. i always said it was like eating tiny bits of sunshine. loved corn! didn't know a gmo from a hole in the ground. if i was gonna pick something we eat to crusade against, it would most likely have been meat since i used to be vegetarian all my life until the 1st pregnancy. or the way we give children cow's milk in our country - that's always ben a HUGE pet peeve of mine. but corn? who would have ever guessed that corn would have to become my pet conspiracy theory? but once you start looking into it, there's very valid reason for concern.
i can't urge people enough to learn more about it - the corn your kids are getting is not the corn you
got !
1st day after giving (corn) meds
here is 'lou today, after starting the meds last night and giving him this morning's dose, as well. hubby and i both agree that his previous sites already look a little better. his wrists, ankles and knees were red and irritated w/ pimple-like sores opening up on them. already today they look much drier and flakier, not so beefy and irritated.
however, he has been scratching everywhere else constantly and saying his clothes hurt him, so he keeps taking everything off to be naked. a new irritated rash is creeping up the backs of his legs, buttocks and forearms. this is classic corn exposure pattern for him. if i keep giving him the meds, it will go up his trunk to his neck and then start concentrating on the hands, ankles and knees again.
i want to take him in to the allergist so he can see and document for himself, but they're closed today. i thought i could go to the ped and have her verify and bear witness to the allergist if need be, but she's also off today. even my favorite nurse/assistant of hers is off today! so instead i'll take pics and post them here.
the physician's compounding pharmacy that was so helpful yesterday called and said the manufacturer where they get the actual drug (prednisolone) in the steroid med is overseas and they don't expect an answer on whether or not it is corn-free before it comes to them until monday. i have to say here how impressed i am that they were very eager to learn about the www.cornallergens.com website and find out for me, though! i wasn't sure what level of response i'd get, just being a concerned parent as opposed to a physician inquiry.
so it looks like a waiting game today, balancing the severity and discomfort of the new rash against the clearing up of the old one and a balancing act to see which one advances more quickly. if the beefy, fresh new rash gets much worse, i think i'm going to just quit everything, wrap his worst breakouts areas in raw shea butter and saran wrap w/ socks overnight and eat absolutely nothing but rice with him until we get the blood test results as to what the original offending food is this time.
i had an allergist tell me about one case he had where the corn allergy was so severe and - like 'lou - the supplemental neocate he'd prescribed wasn't tolerated at all by the baby and she ended up in the hospital from the severity of her eczema. her mother was so invested in breastfeeding her and she was so reactive to so many things and they hadn't yet narrowed down which foods were the worst offenders (though they knew corn was the worst), that this mother lived on nothing but the neocate herself for a couple weeks to see if the baby could tolerate it this way and to keep all other offending food proteins out of her milk and continue breastfeeding. if another mother can do all that, i can surely quit giving him more corn in meds that obviously aren't working and eat just rice for a few days!
i'm hoping we can hold out until tomorrow when i can show the allergist so he can see for himself (and of course, secretly also hoping against all my experiences and instincts that i just haven't given the meds long enough to work and there will be a miraculous turnaround and cure at some specific point and that this fresh and raw rash is just some coincidence... but aren't antihistamines and steroids supposed to suppress all rashes and itching? so shouldn't he really not even be able to break out w/ a new rash right now? argghh, i wish someone who's already been down this road would write a book i could refer to!)
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!
8 Steps for Cancer Prevention
Cancer prevention?
Maybe I should have titled the subject line “Illness Prevention.” But the big C always gets people’s attention. Especially when 1 in 3 women and 1 in 2 men are getting cancer now.
So why not change a few things to reduce your risk?
1 Eat more vegetables
Vegetables aren’t just delicious and filled with vitamins and nutrients; they also contain a lot of fiber, antioxidants, and beta-carotene. All of these help reduce your risk. Eating vegetables makes your body more alkaline, which is also good for preventing any illness.
For more on why eating a more plant based diet is better for you and the environment, please read another great resource at GoVeg.com
2 Go organic
Organic food not only tastes better, it doesn’t have all those pesticides, antibiotics, steroids and growth hormones that can make you very sick. A lot of people say to me organic costs more. One trick is to go to your local farmer’s market right before closing. The vendors are practically giving their products away. Plus, eating organic is much cheaper than getting sick, missing work, and having medical expenses.
3 Sweat more
Sweating releases toxins through the skin. Fewer toxins in your body, the lower your risk of getting sick. Go for a hike, take a power yoga class, or sit in a sauna on a regular basis.
4 Do a liver cleanse on a regular basis
If you’ve been getting my newsletters for a while, you know I’m a fan of doing a safe cleanse at least once a year. Along with sweating, a liver cleanse will flush out the bad stuff that’s stuck in your liver.
5 Taking care of your mental health
Stress can weaken your immune system. Thus, making you more susceptible to getting sick. So whether it’s meditating, therapy, a spiritual practice, exercise, or all of the above, please take care of you!
6 Avoid sugar, including sugar substitutes, and dairy
Sugar feeds cancer. Eat some fruit instead. And dairy is mucous forming, since it’s mucous too. Try milk alternatives, such as hemp, almond, or rice. You can get really creative and make your own.
7 Deep breathing
Cancer cells won’t thrive in a highly oxygenated body. So take out that yoga mat and breathe.
8 Don’t store or cook your food in plastic.
Highly heated plastics release dioxin (carcinogens) into your food and ultimately into the cells of the body. In fact, avoid using plastic altogether.
See? That wasn’t so hard, was it? Knowing that you’ve taken the first steps to being disease free can be liberating.
Live natural. Live well.
Heather
From Elephan Journal
