It's been too long since I've gotten on here. Between vacation, Killian's birthday, Easter, then the birthday parties...I'm beginning to settle down again. Thankfully!
We spent a week in Orlando and so many mental notes were taken for this purpose. Well, it was nearly a month ago and my mind is like an Etch-a-Sketch lately...I lost a lot of my notes. The main thing I noticed while there (and since returning) is how much our culture is focused on FOOD. We couldn't walk 10 feet without some form of food vendor slapping us in the face with their dairy infested menu! And the "tourist capital of the world" (Really? Orlando, FL?) is NOT food allergy friendly. They're not even food allergy aware! We played mini golf at a place that also sells Popsicles - cross contamination of dairy. I asked if there was vegan or dairy free alternative nearby. The woman had no clue what I was saying, I may as well have spoken a different language. Even the grocery store was lacking in some of our favorite alternative foods found back home.
We made the best of it, we just couldn't stop and snack at the theme parks like most vacationers. Thankfully, we were able to bring our own snacks and foods with us. I will say, T-Rex Cafe, which is part of the Rainforest Cafe, was AMAZING! We visited this restaurant while at Downtown Disney (FYI - MORE FOOD and stores) and when I asked about an allergen menu I was told to tell the server who will assist us in our safe options. We did. We were almost immediately greeted by the Chef, who knew exactly what was dairy free and even offered dessert options. Prepared by him to ensure no cross contamination and quickly delivered to our Moose. That was awesome, and Moose's first time ordering a dessert off the menu! Ahhh, the little things.
Our airline was a bit confusing for us. First I was told everything was noted and would be handled efficiently. Not so. The hold up we created with the medicine bag at security - oh well! Sorry fellow travelers. Then we were told we could board early to clean the area around his seat. Never happened. We then inquired in Baltimore at our layover - no problem, got right on, got seats together, and wiped down EVERYTHING. Leaving Orlando we inquired again. They told Tony it's not necessary because they don't serve any dairy on their flights. Well, they serve coffee with cream, and then they handed out small packets of Cheez-its! It's bad enough they serve peanuts still- knowing the high numbers in that category. I quickly refused and told the attendant my son is severely allergic. That's frustrating. We cleaned high and low and washed our hands when we realized that. Our other flights were pretzels and peanuts...
Also had a bit of a fight with our hotel. Mainly because they didn't have our room when we arrived - they overbooked and sent us elsewhere for the night. I couldn't have been more clear about our need for a refrigerator and microwave since our son has a life threatening allergy...they finally "upgraded" us but kept trying to correct the situation with a food credit. After 3 offers and 3 declines, I finally told the young manager that, at this point, his "food credit is a slap in the face". He still offered it the next day - at our re-check in. We traded it in for a game room credit. It worked. Killian couldn't even eat their hot dogs so it would be stupid for us to accept it. We go grocery shopping and load up in the tiny fridge. Side note: I called and confirmed our reservation and appliance request the day before.
Our hotel is located on International Drive, where it appears Central Ave threw up on Times Square. We walked and drove for miles to see what Killian could have. IHOP's turkey bacon and fruit bowl, and Chili's fajitas, no sides. That was IT. Since we were there for Killian's birthday, I frantically searched for a vegan bakery. It was about a half hour away, in a sketchy part of town, but it made his day extra special when we told him what we were there for! We got an extra cupcake and surprised him at dinner (at Chili's) when the staff came out with his special cupcake and sang to him. Little things we take for granted or are so embarrassed by, he LOVED it! Again, he can't order dessert off the menu.
All in all, it was a nice vacation and we're glad to have gotten away from the snow for a week!
I should probably mention how well Killian did while we were in Florida!! The week leading up to our departure from NY, he was experiencing breathing problems. I had him on 3 treatments of the nebulizer up until the day before we left. The entire week we were in Florida he did not have a single dose of ANYTHING. Nebulizer steroids, albuterol, Zyrtec, Nasonex - NOTHING!!! It was amazing, beyond amazing! He's been on those meds every single day since June. My first thought was obviously "we need to move!". I wouldn't move to Florida, but definitely something in the NY climate (cold) keeps him sick all winter. My second thought was "What if he developed allergies to the different trees, like the ones here?". It would make sense to move to a dessert then, right? Dry heat, no plants/pollen. I've read that living near a beach is helpful with allergies too - the wind and water keep pollen moving away. I've done loads of research and all roads point to:
The day after we returned, so did his cough. Just yesterday we paid a visit to the Pediatrician. Ear infection. Triggered by allergies. Right on time - tree pollen is making it's debut!
It's good to get back in the swing of things! Thanks for reading!
UPDATE: Our semi-annual pub crawl is coming up! Friday, May 3rd starting at Pearl St. Pub $15 p/p, $25 per couple. As always, all proceeds go to FARE
https://www.facebook.com/#!/events/197810213676317/ for details!
My mind started running a bit faster than I could handle yesterday, in a good way! We're preparing for our first real vacation getaway this week! I've been trying to prep and plan what needs to be done after our return...Killian's birthday party is top priority! Also - our SEMI-Annual Pub Crawl for Food Allergies!!
Our first crawl was such a huge success - an amazing turnout of 60 friends, family and strangers! My goal is to make this one better! We definitely need some food to kick it off with. Sixty people drinking on an empty stomach - bad move! Sorry everyone. Also, I want to make it more informative for everyone. It was great, telling our story to all the participants and they were able to share a little bit with the public, but it needs to be BIGGER! So I'm planning a FUN true/false competition with food allergy facts, and perhaps a "Who knows hot to use an Epi Pen" contest - with fun prizes of course! I think we really need to take advantage of the great opportunity we're given.
Sadly, my idea was reinforced this morning after reading the news. A young man, (19) a student in Springfield, MA passed away after ingesting a cookie baked with peanut oil. He was anaphylactic to peanuts since the age of 10. His mother stated she was not aware this was something that could kill him and also that by the time they realized he was having a reaction, it was too late to administer life saving epinephrine. This is yet another life that should not have ended this way. This is exactly why I want to teach as many people as possible HOW to use an epi pen, the truths and myths of food allergies, and YES they are real and YES they can end lives, they have. http://www.turnto10.com/story/21584682/bryant-student-dies-after-eating-cookie
Bovine Intervention officially has started it's FARE Walk page, please feel free to join, share, donate. We aren't walking until September but I always like to get a good start. This is obviously something I talk about year round rather than just each September. I hope no one is sick of it! If so, I apologize. I guess I'm kind of sick of it too; watching my son suffer so much from all of his allergies, checking ingredients, writing companies for irresponsible labeling, Doctor visits weekly, ER visits 2-3 times a year, co-pay after co-pay, drug upon drug. Yeah, you could say I'm sick of it. So I really hope my posts to educate the public never tire you or bore you. I hope you NEVER have to assess symptoms and administer an Epinephrine auto injector. I hope you NEVER have to rush a loved one to the hospital hoping it's enough time to save them from dying. I hope you never watch your child go through what we have simply because he ate something. I hope you DO know what to do if it ever does. I hope you understand the severity and the stress and the importance this brings to families like ours. http://www.foodallergywalk.org/faf/search/searchTeamPart.asp?ievent=1062783&lis=1&kntae1062783=CB7F6F1A4BD74A0A8F6A1EA44A8FE34E&team=5443506
I'm currently listening to our son cough, almost dry heaving, fast asleep. I just laid with him and watched him cover his mouth each time, and rub his nose non-stop, completely out of it. I can't do anything for him. He's had all of his meds, water, freeze pop...I can't comfort him. It angers me as his mom. I should be able to do SOMETHING. How many times I've had to sit and watch and wait. Today I felt good that I remembered one of his meds to administer after the school nurse called me to say he was having a hard time breathing. After more than a year I FINALLY remembered what I had to do. Before I'd bring him to the Dr., pay the copay, watch them give the medicine we have sitting in our cabinet, and leave with the same instructions. DUH! I was proud that I remembered....after the nurse called. I never should have sent him in. These are the things that drive me nuts. I don't know which symptom is a cold or an allergy. I can't decide if I should attend culinary school to feed him better or nursing school to know what the hell I'm doing. Today has been tough. For the both of us. I feel like he suffers more until I figure out what it is I'm supposed to be doing for him.
I'm pretty po'd at General Mills right now. Yesterday I grabbed a bag of Chex mix from a vending machine, at Killian's gymnastics class. Like always, I turned it around to read the ingredients even though it was just for me. Second nature now I guess. To my surprise - NO dairy! I was ready to go buy a bag just so he could try a new snack! Thankfully, I didn't celebrate too early and pulled out my TWO apps for allergen info. BOTH posted the same info - "NONFAT MILK" and "PEANUT FLOUR". Interesting because the only allergens listed were "WHEAT" and "SOY". *For those of you unaware of dealing with food allergies: companies with different sized packaging have different lists of ingredients. For example, a candy may be allergy free until you buy the small packs like the ones sold at Halloween. These are usually packaged in a different facility and may contain an allergen that the larger packs do not. Now, with that said, my app pulls up the exact size package that I purchased in hand. Different ingredients in apps vs physical package. The company responds with a generic statement that the list on the package is the only one to go by, as others may list different size packaging ingredients. HELLO!? I think I'm aware of this! The woman also informed me to contact "FAAN" for any help recognizing allergens in different products. Hmmm, should I tell them that their reply isn't even up to date!? FAAN is now FARE. Clearly I can't trust them if they can't even be honest about their ingredients.
This is the crap I deal with all the time! And it's not just food. Last year I was on the phone with Crayola trying to find out if the finger paints contained dairy. You've probably guessed Killian had a reaction or else why would I call them. If so, you guessed correctly. Just another thing to be on alert for in Killian's world.
Here's to a better tomorrow. Goodnight!
It's Snowing!!! I'm just as excited as you are. March in New York, you just never know what it'll bring. Blechhhh! Hurry up sunshine!
We're in the early stages of some bug. Killian woke up around 11:30 with a fever last night. Wasn't much of a surprise to me, he had a little cough just before bed that set off my radar. By 9:30 I heard a bark on the monitor....oddly enough, he hasn't coughed since.
The coughing drives me nuts! Not because the annoyance a constant cough can bring, nothing like that at all. Coughing is usually the first sign of something is wrong. I think most parents hear their child cough randomly and don't give it a second thought, until it becomes a nuisance or has that certain "bark'. With us, it's a little more like walking on the edge, especially when he's eating or right after a meal. How quickly can we get back on course? A little cough is probably nothing, but my first thought is "ANAPHYLACTIC ATTACK!!" if it happens at meal time. Coughing any other time is more like "Oh no, is he sick? is it asthma? allergies? Here we go!". So, yeah, we're a little more sensitive to a cough, tickle in the throat, went down the wrong pipe, whatever you call it - we call it Get Prepared!
Yesterday, I made us both bagel sandwiches for lunch. Killian's was complete with his special cheese and mine - dairy. I finished his and started making mine. By the time I sat down to eat it, I didn't even want it. I have this Love-Hate relationship with some of my favorite foods. It started around the time his solid food eating days began. I can't just make my sandwich, no I have to analyze it. I eat some cheese as I go along, I stare at it, wondering how it can kill my child - like the answer will appear on the cheese, kind of like the Jesus face on toast? I hate it. I hate this food that attacks my son for no known reason. It's pure evil. I wash my hands countless times during our sandwich making. I won't dare touch the mayo, deli meats, bagel bag, knife, dish, ANYTHING after I touch my cheese. Wipe down the counter, wipe down the table, wipe down the fridge. We take no chances, other than actually having it in the home. I realize I don't have to eat dairy. I also know there is no way in hell I'm eating soy cheese! I can't stomach the smell of it. I guess it's just not something I think of until I'm in the moment. I really don't eat much dairy when he's awake. I certainly don't over think my nightly root beer float when he's fast asleep. That is, until he wakes up sick in the night and I can't even kiss him.
Some of my MOST favorite foods are threatening to him and I hate the foods for it. I talked about the peanut butter days - that was ridiculous. I used to keep peanut M&M's in my work locker for a "fix". Eggs weren't too difficult - all of my great baking went down the drain after I couldn't figure out how to make a cake without them. Eggs gave him some hives, nothing major, so it's not like we had to avoid giving him kisses if we DID eat them, but still - eggs are in a lot of foods so we avoided them. Can we discuss Mayo for a minute?! Who INVENTED this stuff?! It's so gross and why is it not refrigerated if it contains egg? Even the ($7.00 for a tiny jar) vegan substitute is sold in the refrigerated section. I prefer mustard, but Killian likes a little mayo.
Moving on - there have been 2 new studies released recently on the role of Vitamin D levels during pregnancy, and food allergies. One says too much Vitamin D may cause them, the other says too little might. Obviously, speak with your OB/GYN, Pediatrician AND Allergist on this one! Personally, I was told by my most recent OB/GYN that I have a very low Vit D level after testing for conception. He asked if I was tested when we tried for Killian, by my former Dr. I was not. He then informed low Vit. D increases the risk of pre-term labor, preeclampsia and c-section. Check. Check. And CHECK! So reading low vitamin D may play a role in the babies food allergies makes sense to me. The link of the two makes sense to me, I have no idea how it actually relates, don't ask me that! :)
There are so many studies coming out on when to introduce common allergen foods, how long to exclusively breast feed, what formula to use. It's a bit overwhelming. But I'm hoping these little discoveries are leading to the BIG ONE! How to cure it! Another big thing going on in the food allergy world is OIT (Oral Immunotherapy). This is when an allergen is introduced in very small doses, either swallowed or placed under the tongue. The goal is for the immune system to build up a tolerance to the allergen over time. For some this is working. For people like Killian, this is not anywhere near an option and strict avoidance is best recommended. Also, allergy shots are NOT effective on Food Allergies. For now I'm thankful to see that roads are being carved out of the giant, rocky mountain. Hopefully the signs to a cure will be up in the near future. It is comforting to read all the studies, even if some contradict others. It shows me there are people working on it, all of our efforts to raise money for research is literally paying off. I am confidant Killian will eat dairy some day. Whether he outgrows it or a cure is discovered is what remains to be seen!
Sitting here, eating cold, leftover pizza. YUM! I could live on pizza. Pizza and asparagus. Our home is not 100% dairy free as you might think or even expect. I've often contemplated it. It was hard enough getting Tony to eat our olive oil enriched, dairy free butter. God - what a fight that was! That was important to me, we use butter in so so so much food. Aside from some junk foods like processed cookies or dry foods with season packets, we have cheese, milk and ice cream. All of which are easily substituted for Killian. His soy milk comes in half gallon cartons so I will only buy the plastic jugs of dairy. I'm so afraid of grabbing the wrong one. Also, his food is separate from the dairy. It's always in the back of my head to eliminate it all, but we've never had any mistakes and I think our system is fine. Again - this may not work for other families.
After a year, it's still sometimes odd to me to see an egg carton in the fridge. We had grown so accustom to not using eggs that I stopped buying them - for nearly 4 years. It took a while to crack them without dropping shell pieces too, that was frustrating but I laughed every time! We really don't have too many foods that we eat containing dairy that Killian can't have. Pizza is basically a staple in this house, for me. We've tried several pizzas for him - he just doesn't like any of them. I'm sure if he could have a regular dairy pizza he'd LOVE it. He'd have to, he's my son! I remember once in a blue moon Tony and I would have a PB&J sandwich around11pm, when we knew he was out for the night. We were like teenagers sneaking out - the thrill from it! Please understand, I grew up on pb&j. EVERY SINGLE DAY from kindergarten through high school it's all I ate. The older I got, the more sandwiches I ate - I was up to 3 a day during track season and that was just AT school. I ate just as much throughout my pregnancy. Naturally the diagnosis of peanut butter was tough to swallow. Since we knew it wasn't airborne we'd sneak it at night, and Tony would disinfect the entire kitchen, wash all the dishes. We hid the peanut butter on a top shelf, away from food and anything else. It was like our drug. Now I buy the giant, 2 jar set at Sam's Club and try to make it last a month. See - that's my son!
I really don't know how vegans do it. A vegan chooses to not eat any animal product including egg, dairy, honey even. Perhaps the slight difference is a vegan may have a reaction if accidentally ingesting an ingredient the body isn't used to, and Killian (and all severe food allergic people) can die. That's why I have an app on my phone just in case the label leaves something out. The number of times I've googled an ingredient is astonishing. Should we really eat something if we have to investigate what it is!? That's an easy one!
I was vegetarian for nearly 10 years. It was pretty easy and I felt much healthier than I do now, but vegan? - well you see how much I love pizza! Also, I wouldn't be into sprouts and hummus, tofu....other earthly things vegans enjoy eating. And since I won't eat it, I won't make it for my son either. But really, I know he wouldn't eat some of the things I've seen on the vegan menu either. Instead, I google the crap out of any recipe and add "dairy free". With the influx of food allergies comes a lot of great brands both allergy free and dairy free. Tofutti has become a bit of a savior in our home. This is something my former boss introduced me to. They make cheese slices, ice cream, ice cream sandwiches, "drumstick" ice cream cones, cream cheese, sour cream, ricotta cheese - ALL DAIRY FREE, kosher parve. I <3 Tofutti 4--> As does Killian! This child has dipped everything into the cream cheese. Chips, peppers, carrots, crackers, Cap N' Crunch Crunchberries! Oh yeah - he's not so picky when it comes to cream cheese! Amazing, the "shrapnel" I find in his tubs of this stuff....
Tofutti also has some great recipes both on their website and on the packaging. It's how we made our very first dairy free Alfredo dish! Exciting, he liked it. He can learn to love it once I "doctor it up" a bit. :)
Kind of funny, funny like ironic not really ha ha, that I notice we're going back to the old ways in terms of food. I'm pretty sure many in the food allergy community are (probably vegans too). It's too risky or even not possible to buy the pre-made, already processed foods so we make our own. Killian never had a donut until I googled a recipe to find special ones. Wish I could take the credit for creating the recipe but I've made my own changes to make it mine. Good enough for me, for now. I make waffles from scratch, ice cream from scratch, nearly all baked goods from scratch, sauce, soon to try pasta! My husband maintains an awesome garden every year, that I start seedlings for. I often feel like I'm barely upgraded from my grandmother's upbringing. There's nothing wrong with it at all. All they had was organic produce and hormone free meats. Except back then it was just called meats and produce. The funny part, to me, is that Killian's diet requires a much healthier, more natural way of eating and making food....probably what's behind all these food allergies - the exact opposite. I'm sure my diet and environmental factors had a lot to do with the issues he has today. I can't prove that. I'm no scientist or Doctor - wish I was and that I could. My parents have told me meat tastes different from when they were kids. That's scary! Gross and scary. Before Killian was born I would buy organic if I had a little extra money to spend. Same with the hormone free meats...I was still hoping for big boobs like today's teens have....I digress. Now, I'm practically forced to buy it. I'm glad to, I'd always choose to if money wasn't an issue. But it is and we make do anyway. Having that garden REALLY helps in the summer! It's so great, I can't wait for the warmer months.
We found out last year - after Killian outgrew peanut and egg - that we can claim his foods on our taxes. That would have been awesome to know for the previous 3 years. That's when his mayo was nearly $6 a jar, soy nut butter $5, the egg replacer, I don't even remember all the stuff we were buying all the time. And naturally, it all ran out at the same time. I'd drop nearly $20 on 3 items for him. But that's what you do! As parents, you do whatever you need to feed your child and you figure it out after. I've been saving receipts for the past year - I'm curious to see what it totals to. Word to the wise - if it's a medical reason for food aversion, SAVE YOUR RECEIPTS!
Some other great brands are Daiya - shredded cheese, we use Silk soy milk (the boys LOVE Almond chocolate), and Enjoy Life is a brand that is free of all the Top 8 food allergens. Enjoy Life makes lots of cookies and snack bars, and my favorite - chocolate chips! I make all of his candy with it, so does the Easter Bunny! CherryBrook Kitchens is a great dry mix for cookies, cake and frostings. So Delicious makes soy milk, ice creams and yogurts. More and more foods are becoming available for the food allergy community. I'm not familiar with the gluten and soy allergies. I know many foods are naturally gluten free, some easier to find than dairy free in my opinion. However, I do remember saying when Killian was first diagnosed with the 3 foods allergies "Thank God he's not allergic to soy or wheat! I don't know what I'd do." I've learned a bit since then and if either of these are on your radar, I'll gladly help you maneuver around them the best I can!
Lastly, I would just like to thank all of you who have reached out to me in the past regarding your child's digestive issues. Whether it was related to dairy or not, I'm so glad to have offered you some form of help or even our allergist's number. There are so many food allergy families that prefer to stay in the dark, and I just don't understand why. I am here every day, educating myself in every way possible so the next "Killian's Mom" can hopefully go down a smoother road. We are a community, my "door" is always open for you or your loved ones. I'm certainly no expert but I can quickly point you to those that are.
This picture was taken the same day we rushed him to the hospital at 5 weeks. The color of his skin should've been an indication to us...
It's March! Spring is so near, I hear more and more birds each day. It's quite lovely...and then I remember what last spring brought. Four months of sickness. I'm hoping it won't be nearly as bad now, since Killian is on daily medications.
March starts allergy season - trees to be exact. Last year, right around his birthday, we thought he had a cold. Any virus, cold, sickness, etc. lasts a little longer in Killian's system - he's just not strong enough to fight it like the rest of us. He would be sick for 2-3 weeks, finally get better for a week and get sick for another 2-3 weeks. It was pretty frustrating - exhausting. The sneezing and coughing ALL night. Humidifiers, vaporizers, honey, cold medicine, saline drops, oh yeah! Then the poor thing had croup cough! How could I forget that?! Yes, it was mid to late March and we had a 60+ degree day. I called the pediatrician (after I called my mom, who was right) and the Dr. said she could hear him in the background, definitely croup. She gave us some suggestions - the steam shower to cold outside, freeze pops...the problem was it was too WARM out. She said if he had breathing problems (unlikely) to bring him to the ER.
In great Killian style - 2 am he was wheezing horribly! Reminded me of myself when I had asthma attacks after a big race. We tried outside, like I said - too warm. Who knew? it was March! I remember I hadn't slept in 2 days, Killian had very little...off to the hospital we all went. They gave him steroids to open his airways and said in the future to bring him outside in the cold. I kindly (as best I could) informed that it was 62 degrees outside. I checked the bank on the ride there.
Ahhh Spring!!
I worry when, and if, Killian will become immune to his medicines. He's been on this triple med - daily dose since June. It's definitely working! During the winter, we stopped the nasal spray - he ended up with a sinus infection and an ear infection 2 weeks after that. He had only been off the spray a couple weeks. The we stopped the anti-histamine for 2 days before he awoke with red, itchy, watery eyes. Last week, his steroid for the nebulizer ran out and we had to wait 2 days for the refill. That started up a cough. I hate having him so dependent on all of these meds. And these are just the ones to KEEP him healthy! When he does get sick, he's on so many more. As a child, I was never sick. I had perfect attendance every YEAR until my teen years. This is just not something I'm familiar with. Throw the food allergies in there and my head is spinning! I'll just say he gets his picky eating habits from me.
It was great to hear the dietitian tell us how well he eats because we didn't think so. On top of the life threatening dairy allergy, and being a picky eater, Killian still avoids many foods he wasn't able to eat with the peanut and egg allergies. So we worry. That day, Tony dropped us off and parked the car so we wouldn't be late - Manhattan, you know. We started and a few minutes later, Tony came in. I had JUST said "he's very tall for his age, but he's also very thin. I just want to make sure he's eating well enough." With that, Tony walked in. The dietitian chuckled. If you know my husband you also know he's 6'2" and slender. Muscular and thin. JUST. LIKE. KILLIAN. The dietitian took one look at him, chuckled and said "I would agree and worry too, until seeing your husband!" Okay, so maybe I worry too much? I think we already covered that, ha! Sometimes you just need someone else to say or point something out before you believe it, I guess! I instantly felt some relief but she indulged me and asked about Killian's daily eating habits to be sure he wasn't just thin from a lacking diet.
We left feeling pretty great! And we also realized it wasn't Killian - it was us. He's a slow eater, but really just at dinner. We have sat for up to 2 hours a night fighting with him to eat. She finally told us it's our responsibility to decide what, when and where he eats. It's Killian's responsibility to decide how much. That was difficult, not going to lie. Especially since he heard and understood every word she said to us. He now had the power! BUT, it's been great! We throw out less food, we clear the table in less than an hour (easily) and most importantly, no screaming, crying and fighting at the dinner table. He understands if he doesn't finish, that's all he gets until breakfast. His weight hasn't changed but his and our habits have. She complimented us on his diet and our several meals together. We were a bit puzzled about that part, but again - Manhattan - I don't know how many families slow down to eat together there...?
Aside from not eating much egg, the dietitian pointed out he gets fruits, veggies, grains and a protein in almost every meal. High Five for us, we weren't expecting such a great visit! He's tall and skinny, like his dad, so what. He's healthy! I feel like that's not something we get to say a lot. HEALTHY. Behind the meds and the allergies and the asthma our boy is HEALTHY.
I'm looking forward to the Spring because I can let him run a little more without having the cold steal his breath away. Walking from school to the car these past frigid months has sent him into coughing fits. That's bundled up, with a scarf over his face. Walking. Spring and summer hopefully will mean just keeping up the steroid treatments and lots of baths at the end of the day. I didn't allow him outside all summer on days the grass was cut, or at least during the time the grass was getting cut. I'm hoping that was just paranoia. He was on the daily meds by then, but it was our first time with the new seasonal allergies. It's hard. Fresh grass pollen - gets all over you while you run, roll around and play outside. I didn't know if that would trigger asthma too. Hives? I still don't know, we played it so safe last year. Now that we have a better idea of what to expect and we also know how to handle things - I think I'll let him play outside MORE this year. Killian certainly gets his days in the sun, but I shouldn't have him on lock down because Tony or a neighbor mow the lawn...
I just want to move. Where there's no cold air to close his airways, little to no pollens to make him sick....hopefully he'll grow out of some of it. If not, I hope Tony and I do a good enough job for Killian to transition right into it, as an adult, and not feel the sadness and frustration that we have.
I think I'll close with a true Killian-ism! He just makes me so proud - why not end on a happier note:
A couple of days ago, Killian had a snow day so we went to the Bounce House at the mall. There is a GIANT slide, but you first have to climb the inflatable "rock wall" to go down it. A younger boy, I'm guessing between 3 and 4, was on the wall. I wasn't paying attention but I heard the boy's mom yell to the dad "He did it!! He did it, looks he's up there!" About 10 minutes later, Killian came over and said to me "Momma, did you see that little boy that was climbing?" I didn't...but I said yes. "Well! He wanted to climb but he was scared so I said 'If you just imagine it in your brain and say you can, then you can!' And he did it! He climbed up!" Proud Momma Moment brought to you by Killian!
Some may disagree, but I really think we cannot understand the love from our parents until we become a parent. It doesn't matter if you're adopted, planned, the BIG oops - there's a certain Rite of Passage where you gain years of appreciation and love from your parents, for your parents, and for your child and spouse.
There are no two walks the same in life. Similar paths but different bumps along the way. It didn't take very long for me to understand my mother's love and sacrifice once I had Killian. She struggled in many ways throughout her years (decades) ;) of child rearing. I've met my own. I appreciate her sacrifices. I understand them wholeheartedly. I'm not sure if I could say that if Killian didn't have the allergies and "what if" moments he's had his whole life so far. As a matter of fact - I couldn't. It'd probably be more like me rolling my eyes at mom's stories, much like the "When I was your age..." speeches we hear from our elders. My mom and I have 2 very different journeys in life. Polar opposites. Heartbreak, helplessness and despair were common paths though. And I know neither of us would change it.
With that - not having that appreciation and love until you become a parent, I hope Killian never appreciates our love for him. That would mean his child/children would suffer equally or worse than he has. That's not entirely fair to say, I'm sure he'd disagree with the suffering aspect. I think I speak for Tony and I when I say he has suffered, and will probably suffer more as he grows older. But, it's who he is, and it's who we are now because of it. His path has taken us off of ours and we can't look back at it now, it's just not worth it. I've said it since he was born and I stand by it; "I wouldn't change a thing!". I just really don't want him to call us one day, as a Dad, and say "WOW! I get it, thank you so much!" He deserves better than that.
I'm not quite sure of my audience here, I know close family members have shared this on Facebook, but I like to know my audience. It helps me address you better. So I'm winging it! Ha ha! I'm assuming most of you do not deal with life threatening food allergies, and I try to best explain OUR experiences to better inform you. There are many much less severe than Killian's and yet there are many far worse, even though it seems his are high on that spectrum. Just a little FYI - most children outgrow their dairy allergy by age 3 years. Another FYI - none of the dairy allergic children I've met outgrew it by then. So much for that! Don't tell an allergist I said that ;)
But really, what do these statistics mean? For me, I've finally determined the answer: NOTHING. I'm tired of Google and web MD and every other resource I've exhausted my precious sleeping hours with. They just don't hold any for water us. "So you're saying there's a chance!?" (Dumb and Dumber - the only part of the movie I found funny BTW). That's really what these stats have given me, at least - false hope. I may throw a few in here every once in a while for a point of reference, but again, they pretty much messed with my heart too much. I'm breaking up with statistics.
I lost track of my audience awareness speech. Sorry. I just want to be sure you understand how different each person's allergies are and how each family handles them. For instance, none of Killian's allergies are or were airborne, meaning he does not have reaction just inhaling particles of the allergen. MANY nut allergies are. Peanut dust has been known to send people into an anaphylactic attack, without ever ingesting it. Since Killian did not have an airborne peanut allergy, we were able to go to homes that served peanut products, within reason. We use our discretion based on our knowledge of how and when he reacts. If we were to let someone else bring him, we would not allow him near any allergens in a home.
Setting aside the food allergy, the introduction of the severe dog allergy he had last year has also put a damper on things. Our list of houses to visit has nearly diminished. And therefor, so has our baby sitter's list, which was very short to begin with. My best friend has 2 dogs and we are able to visit when the dogs are not there, (and she has de-furred as much as one can) but not without taking some meds first. One of her dogs is "hypoallergenic". But really, like the allergist told us "if it has skin, it sheds. If it has saliva, it can cause a reaction." I had to ask her, as I'm beyond sick of the strangers telling me their dog is friendly, loves kids, has human hair, hypoallergenic, etc... If your dog licks my child, he can have a bad reaction. Let's complicate it a little more. If your dogs eats a milk bone and licks my child, we will surely be in the ER. Many pet foods contain dairy, so if you're keeping track, that's right! I check not only our food for dairy, but also cat food for dairy. Wish I thought of that before we adopted her! Ahhh, but like Killian, she's the best and I wouldn't change a thing. Again, this may not be the case for every allergy having person, but keep it mind and err on the side of caution please.
Now I'll move onto the mold. It's another fairly new allergy so we haven't had many reactions to know what to look for. All I can say is a musty basement sent Killian into a coughing fit requiring us to medicate him with both Benadryl and an oral steroid. One for the memory bank! You can probably see a pattern here? We have to be very careful as to which homes we accept invitations to. Your home doesn't have to be old, moldy or dirty. You could have a very beautiful home, but just dampness in the basement will set Killian off. We have a very small home. So small that the TWO air purifiers create a breeze cold enough to send me into a search party for a blanket. Yes, just 2. Naturally I got nervous when we first entered his very old, Catholic school but it's been fine. Sadly we've had to decline several birthday party invites from school friends, for different reason. Parties at the child's home I don't even bother telling Killian about. I can't very well call a mom and say "My son has allergies, do you have a dog?" OK, I can. But can I call and say "My son has allergies, is your house moldy? Musty?" Yeah....see that line of concern and insult, I've crossed it. Some are pizza parties or ice cream socials and 16+ little ones with dairy all over their faces and hands, running and playing. That's just a recipe for disaster in our playbook. Have you ever been to a Chuck E. Cheese restaurant? Killian has not. It is unsafe for him to enter there, my mind can't comprehend crossing the threshold with him. Epi pen or not.
So again, audience, I write to you assuming you know little to nothing of the allergy world. I hope you read and share this, as it is very real and apparently not going away anytime soon for anyone. And please, if you have children, share with them too! No child is too young. I'm hoping the more children learn about it now, the less likely they are to bully in the future. Yes, bully. Children have been known to chase a peanut allergic child with a handful of peanut butter, just to see what happens. I hope I don't have to explain how wrong this is, on so many levels. I hope I've informed you well today and I truly hope you share with others. Not just for Killian, but for all the children and adults with allergies of all kinds, and all severity's. Thank you SO much!
Clearly I've been "slacking" a bit on this. I'm not sure how often is too often to post. After getting the first one done, the second was just boiling over inside my head to come out. I've received lots of feedback,(THANK YOU!) mainly to share recipes. For now I think it's best to share my number one source that got me to where I am today, as a parent of a food allergic child.
Killian's very first allergist didn't offer much help. They pricked his back w/ 15 allergens, told us what was positive, wrote a Rx for the Epi Pen Jr., gave me a pamphlet from "FAAN" and said "We'll re-test him in 5 years". Ummmm, ok then! Well a year later the epi pens expired and I called for a refill. They gave me the riot act over the phone. "We can't just GIVE you that!! He needs to be seen by the Doctor before you can do that!" Now you can see why I couldn't wait to switch and finally found a great office about 2 years ago. So that FAAN pamphlet really, really, really helped us! It explained allergies of all levels, which Killian had at the time, and gave me the helpful web address that opened our world up to actually feeding him. www.foodallergy.org YES! The greatest resource I could have. There is a section for recipes, you simply check which foods to avoid (they offer 6 of the top 8) and whichever meal you're looking to make. Dessert, breakfast, lunch, etc. It's SO easy! For me it was, since Killian had 3 major food allergies.
FAAN is also how I stumbled upon the Food Allergy Walk as well as the Food Allergy Support Group I was able to join last year. There are discounts offered for medical ID bracelets, epi pen carriers, allergy free foods. It taught me so much that the Doctor's office lacked in telling us. Just recently FAAN (Food Allergy & Anaphylaxis Network) merged with FAI (Food Allergy Initiative) and is now known as FARE (Food Allergy Research & Education). You may notice our fundraising will now be for FARE, rather than FAAN but it all goes to the same cause as previous years. Thank you for your support!
I'd like to get to my main topic now. I think it's important that I share just how well Killian handles his allergies. I've heard, or even read, about young children not knowing to stay away from certain dishes at relatives home's and the mom just not understanding the struggle with family. Please hear me out, I am in NO way condoning the nonchalant behavior some families show. I just want to point out that children are very capable of understanding, at a very young age. There was a mom with a 3 year old who has the same allergies as Killian. She was furious that her family left a platter (cheese or crackers/chips) where he could reach it and that he "doesn't know he can't eat it". Not to toot our own horn, but Killian was aware well before the age of 3. He has been asking us since he could speak "is it special?". Of course, we still watch him like a hawk but my point is EDUCATE your child. There is no age too early to do this. I kept quiet for this particular mom because I didn't want her to feel like I was attacking or judging her in anyway, it's a very difficult issue to explain to people (food allergies). When you find someone who truly Gets It, you don't want to put them down in anyway about it.
If you're reading this and you have a relative with food allergies PLEASE PLEASE PLEASE understand the stress this can cause the family. If you have a niece who is anaphylactic to peanuts then by all means DO NOT make peanut butter cookies for your family get together. We don't feel we are asking for much because really - we are not asking for much. If this is something you find too difficult to do, or perhaps it's just too stressful and you're afraid of messing up with an allergen, that's fine. It is absolutely okay for you to simply tell the parent or person with the allergy. It's then our decision if we feel it's safe to enter your home. Communication is key and it is not difficult. This is not the best analogy but would you serve alcohol if you were inviting a recovering alcoholic? I would hope not.
Sadly, I know this from experience, some people don't understand until they see the reaction for themselves. I'm not sure if they don't believe the severity, or maybe they just think allergies are nonsense...? I really don't know. I do know I've had to leave a relative's home because an allergen was served to others. And I do know my son had a very serious (almost needed the epi pen) reaction at a relative's home after a child ate chocolate cake and touched a toy. The cake contained dairy. Since then, we've had no issues whatsoever at the homes. Shortly after Killian's diagnosis my parents so proudly made him his own "special" dish for Sunday dinner. I can still see the huge grins on both their faces - "Mashed potatoes, dairy FREE!" They used his soy milk. Great! I said, and butter? Instant frown. They tried. They really did. That's more than I could ask. Luckily, we bring food with us everywhere we go, as we don't expect anyone to cook special for him. It's too risky anyway, I couldn't help but wonder what the ingredients were if anyone did. I trust my parents and my inlaws. Both provide all packaging to us before serving Killian a bite. I'm quite certain, in our absence, Killian would have them read the list off to him! It amazes me how mature he is for such a young boy. Not because he's ours, he really is that way.
Tony and I are beyond proud of our son and his awareness. We discuss it all the time, especially after school. Killian has informed me that if he feels a friend didn't wash their hands well enough after snack time, he'll ask they do it again. I understand what a nuisance that can be, especially coming from a child. If he didn't have the allergies and someone else did it to him, honestly I'd probably think "what a pain in the @$$, a bossy little thing!". So I get it. I explain to Killian how some may view him and that it's important he explains why he asks them to do so. He gets it. He really gets it. Not just the importance of safe food handling and proper hand washing, but he really gets the bigger picture. The impact HIS issue has on everyone around him. Killian turns 5 next month and he's been his own advocate since he was about a year and a half old. Now that he's getting older and has entered school he's learning he needs to watch out for himself more. Mommy and Daddy aren't 10 feet away watching every move of every person at every moment. I must say - he is doing an incredible job!
No matter what I eat, I keep one hand down on my lap. I don't touch a glass, a napkin, utensil, nothing. This is my free hand if he needs me for anything at all. No matter what's on the table I have a hand 100% free of dairy for him. After eating, Killian asks us if we've washed our hands so we can play or show him something or get him something...whatever it is he's looking to do. HE makes sure we remember to wash up! Like we'd forget! :)
Maybe the fact he's had enough close calls is the reason he really understands it so well? We've had several conversations about death, heaven, that dairy can cause this for him, the importance of noticing symptoms as soon as they occur. Killian's main warning to us that anaphylaxis is near: "I have a frog in my throat." If you ever hear that from him, grab the epi pen and call an ambulance even before you call us! Just seconds later and he can barely speak.
To say he will outgrow this would be a wish at this point. It's much too soon to tell. But I promise, whether he does or not, I will spend my life fighting and raising awareness for a cure. There are enough issues in this world to worry about. Losing a child to a cheeto (in our case) should not be one of them.
