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!
Wednesday, March 13, 2013
Friday, March 8, 2013
Have you heard?
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 wayin 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!
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
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!
Saturday, March 2, 2013
Eats and Treats!
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...
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...
Friday, March 1, 2013
Chirp (cough cough!) Chirp!
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!
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!
Saturday, February 23, 2013
Keep the Bubble Air Tight!
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!
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!
Monday, February 18, 2013
4 going on 30
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.
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.
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.
Friday, February 8, 2013
You Really Don't Know What You Don't Know
I don't think any new parent knows exactly what they're in for when they sign up for parenting. There have been SO many things I had no idea would or could happen and believe me, I've done my best to prepare myself. I have this odd "thing" where I try to imagine the absolute worst thing imaginable, simply so it doesn't happen. It makes sense, it's worked so far. While I was pregnant I prayed against all sorts of things, I was a nervous wreck until he passed milestones of developing different diseases or disorders. The ONE thing I didn't think of (I think!) was - you guessed it! Allergies. Thank you, God. Out of all the horrible things in the world - we'll take it! Thank you for thinking so highly of us, trusting Killian to us. I know I'm not supposed to question You, but....nevermind.
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 thef*ck was I thinking?! Then I switched to the opposite - what if he DID pass it!?!? We'd be one step closer to a sense of normalcy. And I knew the egg challenge would follow a month later! Could this really be happening, beating food allergies!? I called my mom, in tears. I remember saying something like "I might be able to be a normal Mom! Where I only have to worry about him being hit by a car, not dying from food!" Is that sick? I don't think so. I hope not. Whatever it is, it's our reality. He eats PB&J almost daily now. It will be a while before he can challenge milk. I wonder if he ever will. His levels are so high, off the charts. The allergist has told us he reacts to things that most with a severe dairy allergy have no reaction to. I really want to believe he'll outgrow it, but I do have my doubts. But who knows, maybe in a few years things will change. Time will only tell.
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.
I should probably save more for later. I didn't anticpate getting all of this out tonight. Bottom line - we've learned quite a bit so far and I'm always afraid of what lesson is next. I need to figure out how to put a door up at that dark hallway. Prayers for another tomorrow! <3
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.
Subscribe to:
Posts (Atom)