Monday, July 14, 2008

How we got here

I'm assuming those who will read this blog, at first, will be people we personally know, who thus know our story (or at least are familiar with it). To those people I say: sorry for the repetition. But to those of you who find us randomly, or join us later, here is the background info.

We are a family of four, dealing with multiple food allergies in me and at least one of our two young children. My name is Nessa. I've been married to Dave for 4 years this past May. Our older daughter is Lily. She turned three at the end of April. She is our reason for our allergy journey. Our younger daughter is Aevryn. She just turned one at the end of May. The jury is still out on her, though she has already shown some reactions to the same foods with which Lily and I have issues.

In a nutshell: Lily was an intense baby (and is subsequently an intense kid. Very.). We actually assumed there were allergy issues as early as one week old. The symptoms were: projectile vomiting; constant nursing; gas; horrible poops. I went off dairy for 3 months. I did not see an appreciable difference, so I went back on gradually. Things seemed to be going okay, so we decided she must have "outgrown" it. Starting when she was roughly 20 months old, and encompassing a two month period, she got hit with a barrage of illnesses including: a mysterious rash and eczema; croup and lingering chest cold; mysterious persistently high fever; constant night terrors; mysterious rash around her mouth after eating certain foods. Remarkably (and not in a good way) the eczema, to this day a year and a half later, has not gone away.

After much trial and error (and doctor's visits and blood tests as well as hours upon hours upon hours talking to other moms online and combing medical journals and articles) we have come to this place of food avoidance. We've been diary-free since May 15, 2007, after a particularly bad week of tantrums, night terrors, screaming and bloody full-body eczema. We've been garlic-, pinto- & navybean-, poppyseed- and turmeric-free since a blood test identified those as problem foods for Lily in July 2007. We've been additionally soy-, corn-, gluten- (including wheat, barley, rye, spelt and non-GF oats), peanut-, legume-, and seed-free since October 31, 2007 (after a particularly upsetting and all around tear-filled week). We have been tree nut-free for several years now, since my random cashew allergy escalated after Lily's birth.

We were also at times fish-, shellfish-, ginger-, onion-, potato-, egg-, tomato-, and pepper-, coffee, coconut-, canola-, banana-, avocado-, and chocolate-free, but have since successfully added them back. I'm a mite worried about the chocolate, but I've yet to pinpoint a reaction.

We have tried the Body Ecology Diet with moderate success. I believe if we had been able to keep at it for more than 3 weeks, we would have seen a great deal of healing. I loved the information in the book and think there is great wisdom in detoxification, especially when you are presented with symptoms that tell you your body isn't handling things well. As with any diet or medical regime, I think it's best to do your own research and figure out how things fit into your life and your belief system. From this book, we learned about food combining. Breakfast is the hardest for us to "properly" combine. However, we do well with lunch and dinner. Rarely do we have protein, grains, or starchy veggies in combination with each other. (The exception is my potato-kale quiche which I have renamed "Best Quiche Ever".)

I am for sure reactive to: cashews, pistachios & mangoes (severe hives on my hands and face); sunflower and sesame seeds (less severe hives on my arms); dairy and soy (severe digestive issues).

Lily is for sure reactive to: diary and soy (eczema worsens/spreads; night terrors; bed wetting; tantrums; digestive issues); green peas (eczema worsens/spreads); raw tomatoes, strawberries, citrus (hives/"mystery rash" on arms and face); dogs & cats (hives on arms; severe worsening of eczema). We're also pretty sure she is having issues with corn slipping into our supplements and other places (darn you xylitol!). We are almost back to a baseline after the terrible waiter incident from 16 days ago, so it will be interesting to see where we go from there.

Aevryn is for sure reactive to green peas, soy and diary (super gassy; mucous in stools; CRANKY; restless/interrupted sleep).

And then there's Dave. Poor Dave is just along for the ride. He may or may not have mild wheat issues. But, he still consumes whatever he wants when outside the house. Additionally, we do stock yogurt, granola, cereal, almond milk, wheat bread, cheese and lunch meat in the house for him. I'm not an ogre. Heh.

So that's us and our story so far.

Sometime in the next few months, I'm hoping to get Lily in to see a local Traditional Chinese Medicine practicioner who specializes in children and allergies. I've heard good things about him from several, unrelated sources. I would also like to get us established with a chiropractor, but there are only so many dollars in a pay period...


Anonymous said...

Hi. I have been reading your blog with great interest lately because my 5 year old daughter has many of the same food reactions you describe in Lily. When I read that you are gluten free (as are we) I wondered if you are aware (of course you probably are) that many processed foods contain additives of wheat and gluten. It is not enough to merely go off the natural sources (wheat, oats, barley, rye) but also to buy only processed foods that are guaranteed gluten free. If it doesn't say gluten free on the label,I never buy it because we've been burned many times assuming. Anyway, gluten (even in miniscule amounts) can cause an excema like rash called "dermatitis herpeteformis" which my daughter used to get all the time. It is most common on the buttocks and thighs, but can occur anywhere. I can always tell when my daughter has accidentally had gluten because, aside from the obvious behavior change, she gets the dh rash. I hope this information isn't annoying. You may already know all this. My daughter, Adie, was mostly non-verbal until we got her off gluten. Being truly gluten free has helped her immensely. She is now quite verbal and obviously feels lots better.

dawnbee said...

i usee to have the same problems as you and your family, we have since left canada, we are english, and now live in italy, our health improved considerably after we left, i also think a parasite cleanse would be good for all your family, i have seen great improvements with allergies and screaming, shouting from the kids. we are now able to have wheat and dairy and flavours every now and again, we stear clear of colours and preservatives just as a personal preference. we use a product from
hope that helps

jjandb said...

Hi there, I found your blog from the mothering naturally site under the recipe swap. I copied many of your recipes. I was reading your history and can realate. My 23 month old son has serious allergies to tree nuts, peanuts, eggs, dairy and sensitivities to cane sugar, wheat (not sure of it's gluton or just wheat...he seems to tolerate things with trace amounts) and dyes. As a baby he was a mess. He had asthma, was sick ALL the time and had infected, oozing full body eczema that was heartbreaking and ruthless. He was reacting to food I was eating while nursing. After going into anaphylactic shock when he was 8 months old we were send to a specialist at a reseach hospital where his specific allergies were identified. Life got easier with a diagnosis no matter how bad. He wasn't sick anymore and at 4 months started smiling becuase he wasn't in constant pain any longer. What lingered though was the eczema. It is FINALLY gone 100% now thanks to an amazing naturalpath DR. we see who did a liver and gallblader cleanse with UNDA homepathic brand remedies. It worked a miracle on him and his immune system has been working at 100% now for the first time in his life. I just wanted to pass on this experiance to see if that can't potentially help you too.

Thanks for sharing your recipes!!!!

Anonymous said...

Hi I found your blog searching for a healthy zucchini bread recipe. I do no know if this will be of interest to you but I have a girlfriend with a daughter who had lots of food allergies with behavioral issues and such. She found a acupuncturist who treats allergies and she has now been able to reintroduce some foods back into her diet. Just FYI.

Anonymous said...

wow, I am sitting her reading your story and I feel like I am reading my own story. We are down to so few foods for my son, who is almost 3, and I have cut out a number of foods myself for my second son, who is almost 5 months old, since I am nursing. He is still obviously reacting; it's such a guessing game...but the eczema, ahhh, what a horrible, horrible thing, my older son has it and it is a daily battle; I just hope one day we're no longer dealing with that. We're currently doing Low-Dose Allergy Therapy (LDA). and hopefully we're on the right track, but like you said, there's only so much money in a paycheck....I will follow your blog, as awful as it sounds, it's nice to know we're not the only ones out there because sometimes it feels like it....Thanks for sharing your story!