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?

Green Tea Healing Day 3 - Before & After

These are the before & after pictures. I started spraying 'Lou twice daily with the Green Tea on Tuesday 6/14/11 and today is Friday 6/17/11.

There's been a delay in getting the steroid and antihistamine his Allergist prescribed, so I've just continued with the Green Tea this week. The night before last, He was so non-itchy after his morning spray, that I skipped his bedtime spray. He woke at 3 am and scratched incessantly until neither of us could sleep. He begged me to spray him again. We got up and put him in the shower and I sprayed him down thoroughly.

I did the blowdry from afar routine and then put a light, loose t-shirt on him and carried him back to bed with me. He was sound asleep while his skin was still slightly damp. I just can't get over what a miracle this is. I am used to kissing any sleep good bye, listening to him cry for hours, nursing all night, trying to find anything to distract him...and being a total mombie the next day. I couldn't even sleep after he fell back to sleep, because my body is so trained to stay awake when he wakes up itching like that! (Thank goodness FB is there 24/7!)

Now that it turns out his medication was never going to get here on time anyway, I am even more grateful my Dr. mentioned this remedy to me, because I know from past experience what
condition he'd be in by now after 3 days of a raging atopic breakout with nothing to help stop the reaction. His skin would probably be infected by now and he probably wouldn't be sleeping or eating and would have lost a lot more weight than he actually did this time. Now I'm actually sitting here thinking I may not need the meds at all !!

I've already written about how the Green Tea stopped the itching and inflammation, but I was worried it was drying out his skin to do so and we'd still be left with dry, fragile and flaky skin that was cracking and not healing - just as if he'd been on the meds. I have been frantically trying to think of a way to get the Green Tea into a moisturizing suspension like a salve or balm to help heal and moisturize his skin at the same time that it removes the inflammation and itch. His skin has been rough, flaky, peely and cracked at the creases and moving parts for the first 2 days of this treatment.

Today I am astounded to notice a normal bit of shine coming back to his skin. The tiny scabby reaction sores are completely gone. The cracks are getting smaller. When you run your hand over his arm or leg, it no longer feels like large-grit sandpaper - in fact, it hardly feels like sandpaper at all now. The flaking has also stopped and absolutely all the redness has been gone for over a day. He ALWAYS has pronounced red rings around his eyes and red streaks down his cheeks in reaction mode.

Just wanted to keep interested readers updated on this experiment and put up some
'Before and After' pics. As always, I'd love to hear anybody else's experiences with it!

Green Tea for healing Atopic Allergic Reactions

We seem to be developing a pattern of losing baseline at this time every year. 'Lou is 3 1/2 now and I finally got smart and am keeping a running log with photos of all of 'lou's outbreaks and the products we discover along the way to manage them - in an album on FaceBook. I am hoping it will help me pick up on patterns more easily, be something I can email to new specialists we consult that will provide a brief and visual compilation of his allergy history and help other parents of food allergy children that I work with!

It finally got to the point of no return last Friday (6/10/11). He was reacting as if he'd been eating one of his top allergenic foods and I'd already ruled out all the usual suspects. His skin was developing tiny open sores and at risk of becoming infected and I couldn't clear it up with my usual natural remedies, so in we went.

At the end of the appointment, I mentioned that our previous Pediatrician had told me about a study in a medical journal citing Cocoa Butter as a wonderful reparative for allergy-damaged skin. Our Allergist got that 'light bulb' expression and told me that he'd recently read an article in one of his medical journals describing the benefits of Green Tea applied topically to skin ravaged by atopic allergies.

At this point, 'Lou needs oral steroids and a good antihistamine - but, due to his extreme corn allergy, we have to order them from overseas via a compounding pharmacy. It can take a couple to a few days to get them shipped to me. In the meantime, he's not sleeping more than 3-4 hours a night (which means I'm not, either), is scratching himself to bloody ribbons and is a walking, talking, rashy, exhausted, constantly nursing, itchy, hyperactive, aggressive, angry, miserable, weepy, whiny mess. Wait, I lost track - was I describing him or me by the end of 3 days without sleep?

So his Allergist could have mentioned rubbing Iguana feces on this rash being helpful and I might have tried it...but Green Tea - who could mind trying that? I ran straight to the health food store and got the powdered version of a full-bodied Green Tea. I boiled water, mixed it up, whisked it together and let it cool. Then I put it in a spray bottle and stood him naked in the shower. I sprayed him from head to toe, until little rivulets of grass blood were running down his body in streamlets. He was scratching all over when I started and when I was done, he was just standing there, standing still for the first time since 3 days ago, when it got really bad really fast.

I let him stand there until it dried a bit, then put a long loose cotton t-shirt on him from his big brother's drawer. He asked to nurse and then went and laid in his favorite little armchair to watch a 'Diego' episode before bed. I was on the computer and kept wheeling my chair over every few minutes, to make sure he wasn't dead or something (you know- rare, one in a million contact anaphylactic Green Tea allergy, because if there was one child in this country that would have it, it would be mine).

I couldn't hear the grunting and dry rubbing sound of his scratching constantly! I've even looked out there when the tone of the scratching changed and caught him sitting down, next to our giant Great Danes slumbering on the floor. He was propped up, half reclining, rubbing his legs furiously against their short bristly fur, crosswise to the stubby ends!

After the Green Tea, he was just laying there, *relaxing* and watching his show. He fell asleep and slept ALL NIGHT. He didn't wake up even once - not to scratch, not even to nurse. Any other atopic food allergic sufferer or parent of one will know how miraculous this is when you are right at that beefy, inflamed, angry, bumpy red stage of the rash.

He woke up this morning and I sprayed him down again. This tea is very strong - his skin is acting like I've applied a steroid or antihistamine directly to it, except I can't even do that at this point, because his skin is so fragile and inflamed that the topical steroid creams and ointments burn him. As does even the raw Shea Butter we love. The Green Tea is drying up the inflammation and taking the redness away completely without hurting him at all. In fact, he says it feels great. I have given him 2 full body spray downs - one late last night and one this morning. His skin is now dry and rough and flaky looking. He is at that healing, chalky state we usually get to after a few days on steroids and antihistamines. It hasn't renewed and repaired his skin. He still has cracks at all his creases and knuckles. The little sores are still there. It's still rough and bumpy. But the redness, inflammation and itch are gone - and as any food allergy mom knows - that's worth its weight in gold. He is sleeping, eating and playing - all without scratching.

I thought I'd be spraying a gallon of the stuff on him all day, but it really seems like a little goes a long way. It's so dark and concentrated, you can't see through it. It looks like blended grass. I bought the powdered tea and added boiling water. 1 teaspoon of tea: 1 cup of water. I whisked, allowed to cool and then put in a spray bottle. I sprayed it all over him, even directly in his face. The itching ceased instantly, as soon as all of his skin was wet. As the day has progressed, I've noticed his skin looks red and inflamed again upon showering, or excessive exposure to the sun. If he says it is starting to itch, I give him a little spot spray around clothing - only had to do this twice all day. (for mornings, I plan to let him shower with his allergy-friendly soap being used only on the most vital of areas, then pat him dry and spray him entirely again - I will give him the 2nd spray down before bed at night).

He says it makes him very cold, so I lay the bottle in a sink of hot water for a few minutes before applying. It goes on warm, but something about whatever it does seems to make his skin cool off quickly. Or maybe it's just that his skin is so damaged right now, liquid feels too cold, like when you have a sunburn. At any rate, I spray it on warm, then aim the hot blow dryer at him from about 3' away while he stands in the shower to help create warmth around him.

I don't know if this can take the place of steroids and/or antihistamines, but it sure is a lifesaver while we're waiting for them to get here! On a scale of 1-10 for reaction severity, this one was a 6-7. I might try to keep using it and see if a combination of the Green Tea plus the raw Cocoa Butter can heal his skin enough that he doesn't need the meds, but keep them on hand in case this takes too long. I am also thinking about trying Bentonite clay for him tonight, but want to hold off to see what the Green Tea can really do alone first.

I was so excited about this discovery (and it came from my child's mainstream Allergist, which is almost just as exciting!!) that I just had to post. I hope it can help anyone else in a similar boat. I would love to hear about anyone else's experiences with it, if you try (or have tried) it. I am sitting here wondering about the potential for mosquito bites and bee stings, chicken pox, poison ivy, etc..., too!

I have created that online album on FaceBook, detailing 'Lou's allergic reactions, tests and treatments with chronologically progressive pics of the reactions (including this current one, which by the way the Allergist thinks may be the epic onset of seasonal allergies!) - if anyone with a similar child would like to see it, please feel free to email me at

Anti Cancer Author and Cancer Survivor David Servan-Schreiber

Just saw this film and feel that everyone should watch this.


Here is an interview of him on youtube

Part 1

Part 2

Eat to Defeat Cancer

Eat to Defeat Cancer


The following article was written by Lauren Gordon, who is PETA's celebrity marketing coordinator and also a certified holistic health counselor.

The latest weapon against cancer to gain buzz is not some fancy drug with a name that's difficult to pronounce … it's food! Everyone from Dr.Oz to famous chefs like Mario Batali are talking about how diet is an important weapon for fighting disease. The "Eat to Defeat Cancer" campaign is a new movement based on research from the National Cancer Institute, the American Medical Association, and the American Society for Nutrition. The campaign is based on the idea that certain foods have properties that can actually help prevent cancer. Prevention is the key to living a healthy life, and what we put into our bodies plays a huge role in overall health and wellness.

"Angiogenesis" is the body's process for creating new blood vessels, but cancer cells can interfere with this process and use blood flow to stimulate their own growth. Eating an anti-angiogenesis diet aims to starve cancer by cutting off its blood supply, inhibiting the production of cancer cells. Anti-angiogenesis foods include strawberries, bok choy, broccoli, soybeans (especially fermented soy products such as miso and tempeh), and tomatoes (cooked is better). Green tea, dark chocolate, and various spices such as cinnamon can also decrease cancer risk. Notice a trend? These body boosters are plant-based, not processed, low in fat, and high in fiber.

Foods rich in antioxidants and fiber have been shown to lower cancer risk, where as dietary and saturated fat have been shown to increase risk. Meat is a common source of saturated fat and cholesterol, and it lacks fiber. Studies have shown that vegetarians are 40 percent less likely to develop cancer than their carnivorous counterparts. People who eat meat daily have approximately three times the colon cancer risk compared to those who rarely eat meat, according to a Harvard study. The recently released documentary Forks Over Knives studies how removing animal-based and processed foods from one's diet can have a profound impact on one's health.

Nourish yourself and fight disease from the inside out. Pile your plate with fiber-rich fruits and veggies and add anti-angiogenesis foods to your meals. Why not fill your tummy with something good for you?