Sealing Our Fate

Since my son's diagnosis, life has been like a whirlwind that ceases to die down and fade away. Every day is a silent and unknown battle with the Food Giants in order to keep my son safe. And it sucks!

Granted, for those of you that know me, allergies as a whole are no strangers to our family. I have had environmental allergies (EA's) all my life. No biggy; only really suffered when the seasons changed. After my Carpal Tunnel surgeries about 10+ years ago, I developed an allergy to ibuprofen. Again, no real biggy; just took Tylenol or Aleve for any pain or inflammation. With that came a severe anaphylactic allergy in the hospital to cinnamon, which is an anteseptic ingredient in humalog (for Gestational Diabetes). Ok, this one SUCKS, but I deal with it. I just avoid anything with the spice, or the oil, or the essence of cinnamon. Thankfully, it didn't badly effect my life, unless the only dessert was apple pie. Then, after the birth of my 2nd child, I developed extreme eczema on my hands (later diagnosed as a gluten allergy). This one REALLY sucked because it made playing the piano extremely painful, let alone doing normal household chores. Changing a diaper was sheer torture because of the chlorine in the wipes. It would eat my hands alive. There is also the fact that myself and my two daughters are skin reactive to tomatoes and peppers...but that doesn't stop us from eating them.

Then you take my husband, who at 21, developed a severe anaphylactic allergy to shellfish. Talk about one heck of a blow to an Azorean. It wasn't too bad at first, but like what can happen with any allergy, with the more exposure, the worse it got. He has air born, touch, and ingestion reactions to shellfish. It is so bad that he cannot go within 10 feet of the fish counter at the supermarket or he will have a reaction.

So ok...all of these allergies were reasonable to bad, but manageable.

And then our son came along in March of 2oo7.

All of my children had really bad "baby eczema", but his would not clear up. It got so bad that he would scratch himself raw. And of course, I could not get my Pediatricians to listen. I could not keep the baby mittens on this little guy for the life of me. I tried every cream under the sun; nothing. Finally, an appointment in January of 2oo8 that was SUPPOSED to be with our old Pediatrician, was handled by a new doctor because our Dr. got called away to an emergency at the hospital. This new doctor looked at me in the eye and said, "The baby is having an allergic reaction to something, and it is coming through your breast milk."

I am sorry... WHAT did you say? I am the cause of this? (Well... really I wasn't, but no one was going to convince me at that point.) Are you kidding me???

So then, the new brilliant Doctor asked me to go on an elimination diet to figure out what it is that I am eating that is affecting my son.

Again... WHAT? Are you freakin' kidding me? An elimin...WHAT?

Those last 20 years or so that my poor Nonie (my grandmother) was on a diet of chicken, rice, and zucchini everyday because of her Lupus, I would try to cajole her into trying to eat something else, to let go and live a little, and now, my fate has brought me to the same plate. Dude! Is my karma that bad??? God, I hope not!

After doing a two week elimination diet, we believed the culprit was wheat/gluten. So immediately we went on a gluten-free diet. My son's skin and my hands started to clear, but didn't completely take away the problem.

It was only when I tried to ween my son right before his 1st birthday did we start to begin to understand the complexity of the Food Allergy world. With the first cup of cow's milk, my son reacted with hives, shiners (red swollen eye lids), coughing, and wheezing. Immediately, I took it away from him and gave him soy milk (which now we have moved to rice milk). I called the doctor's even though I had an allergy test appointment set up consecutive with his 1st year appointment. I was told to avoid all milk until they could get him tested, which was a month away. About a week before his testing, I gave my son an Easter Peep... this time the reaction was worse (yellow dye). Called the doctor, and again, was told to wait until the appointment. The appointment came and the RAST (blood) test was done, and I should get the results in 2 weeks. That was a Thursday afternoon. By Monday, our Pediatrician was calling us, trying to explain the results, and giving us an appointment time for an Allergist for the Thursday of THAT WEEK to have the STP (skin prick) done.

Huh? Are you kidding me???

Little did I know just HOW allergic he was.

The results of both tests were exact matches. No room for "false" positives/negatives. My son has severe anaphylactic allergies to casein (dairy), eggs, and peanuts (all air born, touch, and ingested reactions). He is also anaphylactic to yellow dyes (the Peep). We avoid tree nuts as per the doctor's recommendation, though he was not tested for them because of his age. He is also mildly allergic to gluten/wheat, and soy. He also has a skin sensitivity to tomatoes, peppers, and latex... just like his mamma.

My saving grace... he is *knock on wood* not allergic to corn or sulfates.

So yeah... talk about a major life change. In this household, we are allergic to 7 of the Top 8 most common allergens, and then some.

Since our diagnosis, I have joined a fantastic online support group, Terrific Kids With Food Allergies (shout out to my girls, and our token dads! Woot! Woot!). Without them, I would have probably been in the ER more than once this summer with my poor little guy. But even with all of their help, and tremendous wisdom, it is lonely in this FA world... especially when your child is the only one in town who is so severe. Yes, I live in a small town, so I am not exaggerating. Out of a little over 4ooo people, we have some Celiacs, some with single food allergies or avoidances, but none like my son. And of course, thanks to this, most do not understand what we are dealing with, how we live our lives now, and why we have to plan for the future so diligently. Thankfully, we have a handful of very close friends that are our strength and foundation. And, we have the Love of God.

"I know that the Lord will not give me more than I can handle; I just wish he didn't trust me so much! ~Mother Theresa

Seriously!

TinaMarie