How Much Quality of Life is Negotiable?

As a Food Allergy Mom, I find myself doing it all the time. Bargaining about the quality of life my food allergy kids have.

"He can't eat normal foods, but what he does eat is healthier."
"She can't do birthday parties, but she's better off not taking the risk."
"He's covered in a rash and is so miserably itchy he can't sleep or eat or play, but at least it's not Anaphylactic."
"She's got Anaphylactic Peanut Allergy, but at least it's only one food I have to worry about for her."

And then one day it hits me what I'm dealing with between the both of them. One can't eat anything and the other one can be killed by one of the most popular convenience snack foods in our country. And it also hits me that I've put on blinders and stopped even trying to think about what a life without food allergies coulda, woulda shoulda been like for them.

I look at 'Lou and think,
"Well, he looks terrible and he's broken out just about as bad as he gets, but this only seems to happen about 4 or 5 times a year now and really the itching is only terrible about 15% of his entire, it's not so bad, lots of people have it way worse!"

I intentionally push away thoughts of studies showing prolonged inflammation being linked to higher risks of cancer and autoimmune disease. I consciously avoid calculating how much of his 3.5 yrs he's been healthy compared to how much of it he's been reactive and ill.

If I start to think about how freaking sick I am of he and I having to eat the same 24ish foods for over 3 years now, I sternly remind myself of the kids with EE who have permanent feeding tubes attached to little backpacks so they can still be mobile while they're getting their calories. They don't get to eat at all anymore, in many cases. They play with and smell food while their families eat, so they can get a sense of the ritual of it, but they can't even eat anymore at all. It's happening more and more frequently to kids with food allergies as multiple and sensitive as 'Lou's.

I also go to bargaining instantly when things get bad.
"Okay, here we go again, I don't know what he's reacting to now, but whatever it is, I can cut it out - we can be fine on one (or more) less foods - (Hey, we still have about 24 things we can eat in the whole wide world, why the hell not?) nothing can be worse than that first shock and the withdrawals from cutting out the top 8 allergens plus corn and beans, lentils & sesame, my beloved cat & all my favorite skin and laundry products - we'll be fine!!"

Once in a while, something just happens. Somehow the blinders get knocked askew. And I get a glimpse. I see a normal 3.5 yr old next to my guy. I see that other toddler is 2-3 times bigger than 'Lou. I can't tear my eyes away from his or her beautiful, intact, well-filled, rosy, gleaming skin. Suddenly he looks like I've raised him on fish food all his life. He's all dark circles, thin lifeless hair and red, inflamed, broken skin. His head is too big, too, while we're at it. He is the only child I have ever seen who can fall while standing flat on his feet in the middle of an empty room and land right on his head. He's like a human lollipop.

Or I'll be out in public with him and he'll see another child eating a soft serve ice cream cone or a bag of french fries and say to me,
"What's that, Mumma?"
He has no clue what the ice cream truck is - he calls it the 'Music Van'.

Or I'll watch my daughter light up like a light bulb upon seeing another little girl or baby...and then watch the light fade from her eyes as she comes over to ask me, "Can I touch?"
No public play areas, no birthday parties at ice cream parlors or most food/play venues, no birthday cake from bakeries - my 5.5 year old daughter already knows without asking these aren't options for her.

Once in a very great while, it really gets me down. It's not something everyone immediately understands or empathizes with. In fact, you can tell someone you have children with severe to life threatening food allergies and get anything from outright disbelief, misinformation about how they are overdiagnosed and your child(ren) probably really don't even have them, mild curiosity at the freakishness of being allergic to everything "normal" ppl eat all the time to defensiveness that anyone would suggest people can be allergic to something they themselves hold dear.

Sometimes I just get tired.

Sometimes I get angry at the unfairness of it. I never wanted this for my children. To be happy at the half-childhoods they are getting without normal activities or foods. To be at the mercy of ignorant people who want to put my children at greater risk rather than do a little research and learn what a valid concern this is. To learn to do without, to be left out, not to expect what others can take for granted...some days it gets hard to even call it bargaining when I can't really see the plus side for my kids in any of it.

I'm not pining to give my children the foods that probably made them sick in the first place, I'm just mourning at having to negotiate a percentage of my children's quality of life away.

So there's the moody preamble to my latest update on 'Lou and the Green Tea trial. Ooops, was my bitchy showing? Ah, well - it is part of the title of this blog, now you know why.

By day 5-6 of using the Green Tea twice daily, 'Lou broke out anew. Unlike his normal food reactions, this rash has covered him from head to toe in a beefy, inflamed rash with no individually defined bumps or sores. It's not concentrating at his hands and feet, like his worst food exposures do. It's also over his buttocks and even his nose, which I actually just realized I've never seen on him before. I began the oral steroid and antihistamine for him on monday, June 20, 2011 and the pics above are from today: Wednesday, June 22, 2011. They haven't touched it yet, at 48 hours.

However, I have to say the Green Tea may not be taking away the redness and inflammation with this new, more severe outbreak, but it is *still* helping with the itching. He's only itchy about 2 or 3 total hours out of 24 (See, there's that compromising and settling for less again -how much misery can my child deal with and I still have to call it okay?) and if I soak him with it before bed, we are still getting almost a full night's sleep with only about 1 or 2 wakings to comfort nurse.

The best discovery is that when I let him start spraying himself whenever he feels he needs it, he somehow doesn't feel so helpless, overwhelmed or victimized by the discomfort. I guess it's kind of like the way hospitals let patients start administering their own pain meds. Just feeling in more control can help with the perception of pain/discomfort. So, i'm still using it twice daily on him and letting him spot- spray itchy parts as needed any other time.

I want to take comfort that though these reactions are bad... and last a long time...and keep him from growing well... at least they're not Anaphylactic, that would be the scariest! And then I remember,
"Oh yeah, I have one of those, too!"
And she's starting school in the Fall and I get to deal with the worry and red tape over how to keep her safe and alive there while trying to keep him healthy and thriving at home. And it always happens when hubby is out of town for 2 weeks and I'm on my own with 5 kids out of school. (It really does! I looked up 'Lou's allergy log at a friend's recollection and we were doing this last year in June, too!!)

Some days are just made for the corn, soy and gluten free margaritas! What do other food allergy moms do when they're feeling discouraged?


Rachel Moyer said...

Your blog about being tired of the daily grind of food allergies just puts it so simple. I have a food allergic child and I know how hard it is. Every day we should not have to worry about what's safe and not safe. I do find comfort in the notion of so many people wanting children who cannot. We do have our blessings of having children. I get swallowed into the negative thinking about food allergies. Does it ever get easier? Yes, then something changes and makes it harder all over again. I couldn't function with this situation if I didn't have other people to connect with on the Internet. No one around has this condition. Thank goodness for that! Thank you for your heart felt blogging.

susan H. @ the food allergy chronicles said...

My eldest son turned 15 this August. My son has multiple food allergies to dairy,egg,beef,sesame,fish,shellfish,peanut/treenuts,raspberry,and mustard. He suffered greatly from atopic dermatitis- I can see my son in yours...the dark circles, the large head, the slow growth and weight gain, red, thin,itchy, irritated skin. He was perpetually hot and bothered. It has been a rollercoaster journey to where we are now. In the end, I am not really sure what the formula to help him turn that corner. Was it all the supplements, was it the absence of a dog in the house, was it all the bathing and creaming, the specific creams, the foods he was eating? many variables! One thing I do know for sure is that he was always better in the summer...the sun's rays? In grade 6, he underwent light therapy, 3 times a week from the fall (when he started to get bad)till the summer. During that time, his skin started to heal, he started to sleep through the night(finally) the dry skin bits started to disappear(didn't need to change his sheets every day)his grades improved and he was happy! Was it the light therapy? or was it a combo of everything that we were doing to help? He is in grade 10 now and never did go back for any more light therapy. YOur story is my story...I want to let you know that there is hope...keep up the great work! Susan H @ the food allergy chronicles

jack said...


thank you for your reply - it gives me hope! 'lou seems to have his worst health crises in the summer, when he gets the most sun. in fact, direct sun exposure for more than 10-15 mins seems to make him blanch, get purple shock rings around his eyes, turn cold and clammy and become lethargic. i actually wondered if he was allergic to the sun for a while there! we keep him covered in medical -grade SPF hats and long, light layers when we swim in the summer. the allergist says this reaction to the sun is typical of young children as he allergic as he is to this many things.

but i know exactly what you are getting at - by hook or by crook, you find that one tiny thing that seems to help and you go for it for all you're worth! we haven't quite found it yet - except for avoidance of the things we *do* figure out!

i did start an allergy album on FB that has helped tremendously. smartest thing i ever did. i have pictures posted - chronologically from birth -4 yrs and i take them when he is symptomatic and when he is close to baseline. i label his symptoms from 1-10 and i briefly list what's been going on in his diet and environment next to the pic.
it has helped me to pick out so many patterns and triggers to look through these pics and see similar rash patterns, bedding he was laying on during the worst outbreaks (microfleece!! known skin irritant, who knew?!), things i mentioned we had done or eaten or been around.

i recommend all my clients do the same now - it also saves untold amounts of time when consulting new specialists.a picture really is worth a thousand words and it reveals his whole itchy little life far more accurately than i could.

i wish your son continued good health and hope to be posting the same thing about mine in a few years! thanks for the encouragement! :-)

Anonymous said...

Bless you all for sharing! My five year old son is allergic to so many things I can't list them all, but our basic is wheat, rye, barley, walnuts, coconut, peanuts, soy, milk, eggs, oat, corn, yeast and mold foods have a whole list of things we avoid, histamines, preservatives, dyes, chemicals, and he also reacts to trees, grass, weeds, dogs, cats, and dust mites. I often find myself pushing towards the positives. Unlike my oldest, he doesn't have asthma, so he shouldn't turn blue on me, he can play in the snow, and isn't anaphylactic so things could be worse, right? I focus on the fact that my oldest did overcome his allergies, which triggered his asthma and that stress can still cause eczema even though he "outgrew" his mild baby eczema. I try to look at how healthy we are all eating and how it's spread through our whole family, even curing stomach symptoms from my father's long term unknown gluten sensitivity. I think of how selfless my little boy is and how he appreciates rich life moments like home made baked goods on a regular basis or how tickled he is to plant a garden with us this year now that we know the dirt won't kill him! I feel blessed that when people learn of his itchy challenges that they are touched by his tolerance and loving spirit after all he goes through. Or how before all of this happened, I thought boxed food had nutrition in it and fed this to my first son and quickly feeling proud of all I've learned by the blessing of learning how to feed my little boy so whole. Sometimes it's truly hard, but I believe a Higher power gave us these children because He knew we wouldn't give up the fight! All of it has purpose and our lowest days will give us the chance to find the light, giving us a chance to pick back up and go another round. Oh, and as for the green tea? After a really rough last few days with our little one (full on itchiness with bump irritated and broken from scratching skin), I am just awake, alert, on watch, and watching the clock to see if he'll wake up for his 1am "I'm itchy, will you scratch my back?" (The big joke in our house is that I prayed to have another child to be able to experience nursing again and I prayed so hard, without being specific enough, that I got that baby and now I'm also his nurse!) My husband and I very quickly felt relief when we gave our boy the spray bottle of green tea (one of his favorite drinks) and felt his personality turn from "this again" to calm because he felt a sense of control. I think that's where it becomes truly tough for me is feeling the stress he feels wanting to just let go and not feel so commanded all the time. I try to let him play school with me or find extra time that he can dictate our play time to help, but until the tea I didn't have anything for his "pain management" so in that factor alone it was a success! I consider his skin to be a 4 on a scale of 1-5 of our bad rash days and he was spraying it directly on his scratch marks without pain. I feel like he fell asleep much faster today, even though he's often taken drowsy anti itch medicine orally before bed ( which doesn't seem to make him overly sleepy.) I plan to give this a try for a few weeks to give it a good test because I have a decent list of foods and meal ideas and find that we are mostly dealing with his outdoor reactions. What I'm hoping for is that if this does cure the itching, it could allow him to play outside for very long periods. We feel he does most of his damage from the internal itchiness he feels. We're also grateful that the more allergens we diagnose, the less severe his reactions (dermatitis and sinus symptoms) seem to lessen. Don't give up hope!

jack said...

thanks for your reply and i'm so excited the green tea has helped. my son is not doing well again and we are back to using it at least twice daily right now, too. we've taken to filling up a party bucket in the shower for him to soak in and dumping in about a 3/4 cup of green tea, so he plays and soaks in it as long as he wants to. we make a game of him dunking his face frequently. as soon as he gets out, we slather him lavishly in raw shea butter and put him in long, light layers. it works better than any medications - oral or topical - that we've ever tried for him! and if you browse to my most recent article, i've also since discovered raw manuka honey for infected skin. my little guy is now prone to infections when he is really broken out and was hospitalized for strep in his skin this past february. the manuka honey has helped reverse several newly-forming infections since then, without the awful burn of the topical antibiotics. good luck with your little guy - i still laugh about what i used to think living with allergies would be like!! i had NO idea!!

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