We've learned quite a bit since that second formula reaction. We're always learning. Just yesterday we learned why Killian has had some mild reactions with steak. Assuming it was something in a marinade...turns out about 5% of those with a dairy allergy have a reaction to undercooked steak. Undercooked as in any pink. The night before our visit to Mt. Sinai we had steak. He ate a TINY piece and said his mouth and ears were itchy. Grrreeaatttttt. Popped some Benadryl, checked to see that I could still see down his throat, and watched him like a hawk for the rest of the night. We eat our steak medium. He will now have to eat his steak well done. Lesson learned!
I've been having a hard time keeping up with all of the symptoms of different things. In all fairness, we're new to some things. Anaphylaxis is pretty much locked down now. Killian had a really scary reaction shortly after we moved downstate, when he was just a year and a half old. He had eaten a dairy free pizza for lunch and then we went to a petting zoo. He started getting really watery eyes, itchy nose, sneezing. My first thought was "oh no, now he's getting seasonal allergies? Maybe it's one of the animals?" Within minutes, something didn't seem right, the symptoms worsened, he began to get very blotchy. We hopped in the car, gave him Benadryl (I should be getting kick backs for this stuff!) and got our on new smart phones to find the nearest hospital. Bad parents! We had no idea where it was, we were new to the area, we panicked and yelled at eachother...I was in the back seat with Killian trying to keep him awake, he was slowly losing consciousness and his eyes were sunken in like he'd been beaten up! Tony found signs and followed them to the nearest hospital. We weren't sure if he could have the Epi pen because we had given him Benadryl. We soon found out the answer is YES! We should have given it, the Doctors made it quite clear we should have - like we didn't feel bad enough. Killian was given the shot there and more Benadryl and steroids. I took pictures so I knew what to look for if it ever happened again. I have no idea where those pictures are because the image is forever burned in my head. Hives up his back and chest, huge red blotches all over his face, the heavy breathing. He was just a baby. How could food do this to a baby?? To anybody?! It's FOOD! We're supposed to eat it!
I can't believe how many times I've gotten a glimpse down that dark hallway. That what if? Sadly, a hallway too many have walked down. I'm thankful to never have had to, but that fear is there and it is very real. The glimpses I've had are scary enough. I HATE wondering if he'll come home from school. I hate wondering if a new meal will be his last. The anxiety and stress I have each time he eats something new is so overwhelming. We put so much trust into labels and company's safe practices. What if they screw up? What if they didn't clean the machines well enough? What if some psycho decides to throw in a cup of milk to a dairy free batch because he hates his job? These are truly things that go through my mind.
Recently, one of Killian's school friends celebrated a birthday in class with ice cream sandwiches. You've probably read my Facebook post about. Needless to say, I didn't handle it well. I was caught off guard because the teacher was unsure if a snack was being sent in and asked if I had anything special just in case. She no sooner finished the sentence and the birthday child handed her the bag saying "Yeah! It's mine!". The fact that mom sent dairy ice cream in didn't bother me nearly as much as the fact that teacher asked me if Killian could eat it. REALLY?!?!!? We discussed in Great length the severity of his allergy before he started. I gave her lists of ingredients he could not have, snacks he could have. I told her the symptoms to watch for. That was the scariest 2.5 hours without him. I almost took him home immediately, but the teacher's assistant is a nurse, with allergies, so I knew he would be carefully watched over. I insisted he eat by himself, at a seperate table and the children not only wash their hands, but also their face and mouth. Killian came home bummed that he had to eat alone, but for me - it only matters that he came home - Alive. I won't let that happen again. It's my job to keep him safe, alive. If his class doesn't understand his allergy that's on me. And if this happens again, he will simply stay home. Tony and I don't think we're being overprotective. If something threatened the life of your child and you could prevent it, wouldn't you? That morning created so much stress for the 3 of us, and even a friend at school! One of the young girls told her mom she wasn't sure if she should eat the ice cream, knowing it could make Killian sick. Again - these little ones....God bless them!
Before becoming a mom, I wondered how would I teach a child to use a potty, to read, to eat, to drive...all these things. Now I think back on the past few years and I don't remember the struggle of some of the things I didn't know how to do. All I remember is the hospital visits, the meds, the tests, the triumphs, the statistics. I remember my first Mother's Day, Killian was almost 2 months old. I didn't want a big deal, I hadn't done anything yet. I had just "joked" that all I did was keep him alive (because I nursed him). Wow. The ignorance I see now that I've typed it. Boy did I not see that coming. Keep him alive. That's every parent's job, some have it easier, others much harder, but it's not easy at all.
Every time I walk in a grocery store I feel a brutal kick to my gut. It's such a horrible experience. Every. Single. Time. I make my rounds, grab the same stuff - bread, cereal, soy butter, soy milk, chicken nuggets, veggie, fruit, juice boxes. I read EVERY label, EVERY time. You never know when those companies decide to switch up the ingredients, or even claim an allergen that they didn't have to claim before. It's exhausting. I can spend 2 hours shopping, looking for new things, reading the labels. Re-reading when I don't see "DAIRY" - 2 -3 times before I get my app out and check for hidden info the label may not be telling me. Pop Tarts. That was a big surprise! I checked every kind on the shelf, at the time they were all safe. They've since added new flavors we need to avoid but it's a fun food he can otherwise eat a good variety of.
I mentioned in the first blog that Killian outgrew peanuts and egg. That was just last January and February. Wow! A whole year he's been down to 1 food allergy! That's great! :) Well, anyway, for the peanut test I had to buy Peanut Butter. He had to consume a total of 2 tablespoons (in smaller doses) over an allotted time. I went to the aisle but I couldn't bring myself to grab a jar. I went on shopping....and crying. Could this really be okay to eat? He had never eaten any so we never knew what reaction his body would have. Most peanut allergies are anaphylactic, but he was tested before we ever had given him any, knowing the risk. I finally went back and grabbed a small jar. Immediately I turned it around to read the ingredients. I saw "Peanut" and freaked out! I had to get over it, his test was the next morning. I wandered some more in the store, crying, zombie mode. Thank God I was in Walmart! Hahha! But seriously - I was a hot mess over it. I signed my son, my only child, up for a test to eat something that could possibly kill him. What the
In the meantime we're learning about asthma and other allergies. I knew having food allergies increases his risk to asthma and seasonal, and that his immune system is a bit weaker than a child without such medical issues. And so - "right on time" he developed seasonal allergies and asthma. Christmas 2011 we spent the evening at the ER. After getting over bronchitis, Killian began having difficulty breathing while visting my mom's. He was coughing badly, non stop and even had a few hives appear on his stomach. The pediatrican had mentioned our live Christmas tree as a possible culprit to his sickness, even though we had it 3 weeks prior to the bronchitis presenting itself. After giving him Benadryl and an oral steroid he was getting worse at Mom's. We had to get him out of there. There was a live tree, and a tree scented candle with natural extract. There were shellfish, pets and even chestnuts roasting in the kitchen. There was a cheese platter and peanut butter cookies but we knew his peanut wasn't airborne and we knew no one touched him after eating any allergens, and that he didn't eat any allergens. As soon as we got outside the symptoms improved. He was given a nebulizer treatment at the hospital, which he was receiving at home as well with the new intro of bronchitis and asthmatic symptoms. The next day I called to follow up with our new allergist and got a NEW to the practice/area Dr. who was on call. This was my answered prayer! She informed me of her background and that she is board certified in Ped. and Food allergy. I was happy with Killian's new Dr., since we switched practices earlier that year, but this Dr. was very interested and his case is her life's work really. She wanted to see him asap. We met her, she recapped our phone call w/ Tony since he wasn't on the call, she then spewed out Killian's entire history, confirming she had it all right. Amazing! How many times has a Dr. walked in and said "what are we here for today?" The night before, Christmas night, we got Killian home and I laid in bed with him. Crying my eyes out, begging God for answers, for relief for my son. The next morning He sent her. I firmly believe it. This Doctor has moved mountains for us, has given us such hope and promise. I have every number to reach her, she is having a baby soon and informed me I will be able to reach her whenever I need her, during her leave (God I hope not, I'd hate to do that to her!) At our Food Allergy Walk this year, she gathered the office and made a team and they all walked! I didn't see any other Doctors walking as a team. I love Doctors that practice what they preach, that truly care about their work and their patients.
During the visit, she realized there were many possible triggers at the house and tested Killian for EVERYTHING. Christmas trees, tree nuts, pets (he was tested at 1 year, but we were told that's too young) shellfish, everything you can think of -she ran tests. Answer: Dogs. "Substantially high for his age" - Dogs. Dumbfounded because my brother always brought his dog over to my mom's. Turns out to be allergic, you have to be around it for a while.
To recap - Severe Dairy, outgrew egg and peanut, Severe dog, also mild dustmite (spider family EEK!) and mild cat. We have a cat. He's yet to react, unless he's sick, then he gets a little sneezy). The Dr. thinks he's developed a tolerance to cats and will probably be the type to leave for college and come home with a bad reaction, having been away from it. She's 5 now, he'll be 5 next month so....we'll cross that bridge later?
That was just the winter..he got better long enough to challenge foods. By his birthday, in March, sick again. 2 weeks on, 1 week off. What The BLEEP?! More nebulizer treatments. Finally in June, the allergist saved the day. Again. Tree, grass and mold. And asthma. March through November-ish with the allergies and December through March-ish with the asthma.
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