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!
Saturday, February 23, 2013
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.
Wednesday, February 6, 2013
That which does not kill you makes you stronger
Maybe I should back up a few years? Not everyone reading may know Killian's story.I apologize, I told you I'm new to this.
Alright, early 2008 after our fair share of waiting to finally becoming parents we were truly blessed with Killian. A healthy 8.6 pounds awesome baby. Chunked up so fast and earned the name "Moose". At 5 weeks old Killian had his 1st bottle of formula to hold him over because I was held up late with a medical procedure. (C-section complications - that could be another blog. But it won't) My husband said he drank it fine, went to sleep. Well, he didn't wake up so we thought maybe he was starting to sleep through the night? I kept checking - still breathing, we're good! Around 7 hours I just didn't feel right about it and checked again, but felt the crib sheet - soaked, all around his head! Picked him up...imagine a broken doll. His limbs just fell, he seemed lifeless, words really can't explain it. I undressed him, as I was told to do so to wake him if he fell asleep while nursing. This did nothing. We gave him a quick sponge bath to clean the spit up and try to wake him. His eyes rolled back in his head. This sounds like we took our time, but I promise it was so fast. I dressed him and we rushed to the ER, for the 1st time. Since he was under 6 weeks old they legally had to admit him and check for meningitis.
Cue not 1, but 2 spinal taps (and a 3 day stay). Dr. after Dr. approached us to give us comfort and hope. I was convinced he wasn't coming home. They had no answers, just gave him some IV fluids (after several attempts at his tiny veins). "We're doing our best", "we'll take good care of him", "must be something viral". We heard it all and yet knew nothing. I was pulled away for more of my own medical needs while my husband fought to stay by his side through every test. We spent the nights with him and finally he started to come back to us. They had no answer and thought it was a virus and he "probably would've worked it out on his own had we not gone to the hospital". Mmmm, sure. Fast forward a few months, not knowing about food allergies, we gave him formula for the 2nd time. Perhaps because Killan was a little bigger, his body was able to fight better. Projectile vomit, hives and his cute, chubby face doubled in size before my eyes. "I think he's allergic to something!" I yelled to Tony (my husband). We called the Dr. who informed us to give him Benadryl. How many new parents, that know nearly nothing about allergies have Benadryl? Not us - can you believe Tony went to the store and got home in time for it to work on Killian?! I still can't. Especially after learning today that this reaction is considered "VERY SEVERE" for an infant. I can't even count how many times we've been given a second chance with Killian. Here he was at 4 months old and his 2nd run in with a deadly allergy.
Since then, we obviously learned to stay away from dairy. At the time I was working for a former Doctor, and kosher Jew, who gave me SO much helpful information on the right formula and baby foods and label reading....and - we switched our pediatrician because she didn't help at all other than the Benadryl call.
Around 9 months we noticed eczema, pretty severe eczema. Of course, we thought it was dry skin from the winter months. Poor baby was scratching so hard he was bleeding. New Dr. told us eczema is almost always related to food allergies. WHAT NOW?! UGHHH, we haven't given him anything dairy, but I had noticed mild hives from time to time. So I narrowed it down to either salmon or eggs. Eggs won. So did peanuts! These 2 were confirmed at the allergist's, just after Killian's first birthday. I made some baby foods, I had no idea what to feed him as I was supposed to be introducing him to foods! Let me just add the fact that I ate LOTS of eggs, dairy and peanuts througout my pregancy left me with some guilt. When others pointed it out to me, it made me feel horrible. Could I have caused this?! Did my diet ruin him!? Thankfully I can say "NO!". While shopping for baby food I just couldn't help but notice another mom (10 month old in the cart) was reading the labels. INSTANT CONNECTION! "Does your baby have food alleriges?" I asked. "No, well, I don't know for sure but I have 5 year old twins. One is allergic to (insert nearly every food here) and the other nothing, so I'm waiting to have my baby tested when he turns one..." Thank you God for sending this woman to me!! She had TWO babies at the SAME time, so they BOTH ate what she ate, and ONLY ONE HAS ALLERGIES! "Eat that" everyone who tried to blame me! I couldn't wait to tell that story. Ahhhh, still feels good!
Allow me to bring this back - there is NO cure for food allergies and no known cause either. Lots of speculation but no concrete evidence. And neither Tony or myself have any allergies. We're slowly learning of distant relatives who do/did though. There's a lot to be said for genetics.
Today we met with a Registered Dietician from Mount Sinai Hospital. Killian's allergist (miraculously) joined Albany Med from Mount Sinai and urged us to visit her team there. This allergist has been amazing, I truly cannot sing enough praise and I don't think my breakdown in her office really conveyed my feelings to her either. I'll get into that at another time, what triggered (haha! Allergy term, get it?) me today was the end of the appointment. The dietician asked Killian if there were any foods he wishes he could eat. She was trying to help us with expanding his menu, as we try our best to substitute dairy wherever we can. Killian gently nodded "yes" to her, I admit I was a bit shocked. She asked what he'd like to eat. He looked at me, almost as if to say "Permission to speak?" and I encouraged him. His answer was "Dairy". Hearing him say that hurt so much. I know he just wants to be "normal", to eat with his friends, not worry about anyone touching him, touching his toys, touching anything. We've done, I think, a pretty good job of teaching him to be aware and to not be afraid but we can't change his perception, his feelings.
Whenever Killian has days like this, where his allergy upsets him, I try my best to explain how lucky he is to be able to run and play, how there are some children who can't do these things and how they are truly sick. I try to explain that he's so healthy because dairy really isn't good for us (you know it's true! But I LOVE pizza!) and I tell him to be thankful what he can have and can do. Does this register with him? I hope so, I think it does for a few minutes at least. Until he goes back to Pre K and gets separated at snack time...thankfully he has some amazing friends that bring safe snacks, in hopes to eat with him that day! Children are such beautiful blessings. They understand more than we give them credit for. They are not yet tainted with ignorance or prejudices. These little people do their best to keep him safe and included and, at the end of the day, what more can I ask for my son to have. One by one, he is teaching others about deadly food allergies. He has taught us so much in (almost!) 5 short years.
I could go on forever, but this feels like a good breaking point. Thanks for listening!
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