There's a reason I went pre-med at university but never went to med school. During my first anatomy lab with the cadaver and the overpowering scent of formaldehyde, I knew I wasn't doctor material. Or maybe it was making the first incision on the rat that was still warm in Bio 1A. Either way, the mere fact that I'm squeamish at the sight of blood should've tipped me off. But obviously, I'm glutton for punishment.
The first time Tristan needed a shot of Epinephrine for an allergic reaction that I deemed "severe" enough to warrant an injection was also a huge turning point for me and for him. Before that, I had been his biggest advocate, educating teachers, parents, family, and friends about his food allergies. But I could always end our conversation in the statement: "He has an Epipen, but luckily, we've never had to use it." I couldn't say this any more.
Now I end the conversation with, "He has Epinephrine, it's with him at all times, and whenever in doubt, give it to him. Here's how..."
I've now lost count of the number of times I've injected him. The first few times were adrenaline-filled, characterized by shaky hands and tears on both sides. But after seeing the instant relief it has given him, I wonder why I ever hesitated. Yes, it's hard to prick your child with a needle. Yes, it's inconvenient to go to the ER--nobody wants to spend an evening there when you were just a few hours away from tucking your little ones into bed. Yes, it can save your child's life.
It's not as dramatic as the scene in Pulp Fiction; I'm definitely not in the habit of stabbing anyone in the heart with a needle. That scene has likely scarred many of us for life. Luckily for us, you just put the end of auto-injector on the outer thigh and push. No one even ever has to see a needle.
It's not as bad as forcing your child to vomit because he's swallowed poison, or setting a bone back into place. Think of it as throwing a drowning child a lifesaver. You wouldn't stand on the pier, pondering whether your child is actually drowning, or if after a few more strokes he'll get the hang of it. Even if you didn't know how to swim, you'd likely jump right in and do what you could.
So I know the majority of you are still in the "...but we've never had to use it" category. And I hope with every ounce of my being that it stays that way. But if you ever find your child in the need of Epinephrine, please please please don't hesitate to throw her a lifesaver. Follow your doctor's advice about when to give it. I don't know how many times I've heard moms tell a story about treating their child's allergic reaction and ending with, "I didn't give the Epinephrine, but I probably should have."
In the wake of Natalie Giorgi and Giovanni Cipriano's deaths, and all those awesome food allergy resources out there about when to give Epinephrine, we need to rethink our action plans and make sure our caregivers are trained.
As an added bonus, Tristan has been injected with the new auto-injector the Auvi-Q, and swears that it doesn't hurt. After one administration of the medicine, he asked, "Did the needle go in?" I responded, "Do you feel better?" He answered, "Yes!" Well, there you go. It's worth checking out, especially with the coupons out there.
I frequently think about how raising kids with food allergy is a process, and has a huge learning curve. I don't know why it takes us so long to change our habits, take less risks, or be more vocal advocates. What I do know is that I didn't sign up for this; otherwise, I'd have gone off to med school with likely a very different life. Who knew a huge part of my life would be devoted to managing my child's life threatening medical condition?
Your courage rubs off on your kids. So give the Epinephrine, and teach our kids what they need to know to grow up food allergic.
Raising food allergic kids in a mostly non-allergic world
Showing posts with label Epinephrine. Show all posts
Showing posts with label Epinephrine. Show all posts
September 9, 2013
Changes - the beginning of our school year
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| Callan was so excited to start Spanish Dual Immersion Kindergarten. He even said, "Adios" to me when it was time to say goodbye. |
School kids, allergies or not, will face some new circumstances with each new year. The days leading up to the first day of school can definitely be anxious times for kids and their parents: Who will my teacher be? Will I have friends in my class? Will there be more homework this year? Will everything be harder than last year?
When your child happens to have a life-threatening or lifestyle-changing condition like food allergies, the anxiety is amplified exponentially. The questions above are still relevant but there are even more concerns: How will my new friend react when he learns I can't sit near him because of this peanut butter? Will my classmates wash their hands after lunch? What if someone brings cupcakes to school? What if I have a reaction at school? Will my teachers know when I'm having a reaction?
As I always do before a new school year begins, I met with my kids' classroom teachers and the school nurse to review the kids' food allergy action plans (check out the most updated emergency care plan here). This is a really important step to do every year. Even if your kids will have the same teacher, same principal and staff, and same afterschool provider, it's critical to remind about your kids' allergies, possible symptoms, careful practices, and procedures during an anaphylactic reaction. Teachers and staff take care of dozens, hundreds of kids each year. They care about kids and want the school year to go safe and smooth for everyone. They will appreciate the reminder that your child has some important, health needs and the review of emergency care procedures.
The recent tragic death of 13-year-old Natalie Giorgi prompted me to change a lot of ways in which I prepared our kids' school for possible allergic reactions.
1. We revised our food allergy action plans.
Where once I had approved of Benadryl for reactions such as skin rashes, itchy nose and eyes, and sneezing, I have now changed the course of treatment to epinephrine for any symptoms beyond rash at the point of skin contact (nothing in or around the mouth) and any known bite or ingestion of an allergen even if a reaction does not develop.
My kids' classroom teachers now have but one course of action: an epinephrine injection. This takes the responsibility away from teachers to make a judgment call on how severe an allergic reaction is. Whatever the reaction, teachers should feel empowered to administer a dose of epinephrine, call 9-1-1, and then let medical professionals determine the nature of the reaction. Receiving epinephrine when one doesn't really need it has minimal side effects: increased heart rate, jittery/restless behavior. However, not receiving epinephrine when it is necessary can result in injury or death. In fact, research points to the under-use or late administration of life-saving epinephrine as a prime factor in why individuals do not survive anaphylactic reactions.
Note: there is now an easier-to-read, picture-assisted food allergy & anaphylaxis emergency care plan. If you have not created a plan with your child's doctor, definitely use the new form.
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| Ryken hardly notices the extra weight from wearing his medication. I however notice the difference in my lighter purse! |
In the past, I had been hesitant about having Ryken carry his own medication. I feared he wasn't ready: that (1) he might lose them, (2) he might somehow break them, or (3) the injectors might become toys and get accidentally administered in the hijinks among friends.
We have had open, honest conversations with Ryken about the dangers of food allergies since he was a toddler. Granted, the exact words have changed over time -- at 2 we explained that milk and nut products would make him very, very sick and might have to get a shot and go to the hospital; at 8, we discuss with him the details about tragic deaths related to food allergies such as Natalie Giorgi, who died from accidentally biting into a dessert with peanuts. I do not believe in shielding my kids from the idea that they could die from a small mistake. Death is scary but it is a real possibility. In contrast, I believe that the more my kids are aware and educated -- much like spreading awareness in their school and friend communities -- the more empowered and vigilant they will be to make safe choices when they are not in my immediate care.
This upfront, continuous dialogue has helped Ryken understand and remember to label-read and hand-wash, avoid sharing foods and take precaution in situations where cross contamination might occur. He is ready for the responsibility and very much wanting to carry it himself. He does not fear having the medication on him anymore but, instead, sees the importance of having it as close to him as possible. We have had good talks about his past symptoms. I've had him reflect on past reactions and recall memories of when he *knew* -- when an alarm went off in his head -- that told him he was having an allergic reaction.
So we filled out the required paperwork with doctor and school nurse that authorizes Ryken to self-carry his Auvi-Q twin set. Like a champ, he remembers to strap on his waist pack every morning of school. He chose bright red because he wants it easy to identify for anyone who might need to assist him in case of an emergency. To prevent from losing the pack, we designated one place (Ryken's backpack) where it will always be kept when Ryken isn't wearing it. So far, Ryken has worn it even on the days when I have forgotten to remind him!
3. We have switched to Auvi-Q as our epinephrine injectors.
Earlier his year Auvi-Q entered the epinephrine auto-injector market that was previously dominated by the EpiPen. My family had a chance to check out Sarah's set, practice with the trainer, and talk to Sarah's son Tristan who has had to have the Auvi-Q this summer and most recently and unfortunately at school for food-related allergic reactions.
The Auvi-Q's most unique feature are the audio commands that walk you through the process of administering the injection. Seriously, it's a brilliant feature that will enable anyone who understands English to use it.
We also liked the Auvi-Q's compact size and simple design. It is smaller than the EpiPen, doesn't appear as frightening to those fearing needles, and there's no mistaking where the needle will come out for the injection. Because it isn't as long as the EpiPen, it was easier for my kids to grip with stability. They quickly became experts at using the trainer.
Third, Tristan's positive experiences with the Auvi-Q convinced us this was a drug worth trying. Tristan didn't feel any pain from receiving the shot -- he went so far as to insist that there was no shot, no needle. He has had the Auvi-Q on 4 occasions and has not complained about the pain. On his 4th time having the Auvi-Q, he administered the injection himself. Sarah believes that Tristan was able to do this because his past Auvi-Q shots did not hurt, so he wasn't scared at all.
I have trained teachers and coaches on both the EpiPen and Auvi-Q and, I have to say, I see their relief in hearing the device instructing them and how easy it is to hold and press to activate the injection. Overall, I think the ease of administering the Auvi-Q will keep my kids safer.
If you have not checked out Auvi-Q, talk to your allergist or pediatrician about it. (Your allergist may have a trainer that you can check out!) I recommend calling your insurance company to see if it is a covered medication.
4. We have sets of epinephrine in more places at school.
In the beginning of the year, I met with the school nurse who splits her time between three school sites within the district. I appreciate her understanding of food allergies, her support of self-carrying and the Auvi-Q, but the thing is she is only at our school site two days a week. California districts have really axed school nurse hours -- Sarah's kids do not have any school nurses on campus ever in her entire district! It's really awful policy that California schools have had to deal with for many years now.
Anyway, without a main person with expertise on food allergies at the school site full-time, I decided to use Auvi-Q's $0 Co-Pay coupon to get sets of medication that follow the kids wherever they are at school. So there are sets for each of my kids in the main office; sets in their classroom; one set that Ryken wears; and one set that the Kindergarten lunch/yard duty teacher always carries with her. Having access to medication at all times makes me feel much better. My kids will be exposed to the most food at recess and lunch. And the yard/lunch staff have to watch so many kids that they might not be able to step away immediately to retrieve emergency medications from the office.
I am so grateful for the growing competition between EpiPen and Auvi-Q. To bolster their fanbase, the makers of both EpiPen and Auvi-Q have special offers running until the end of 2013 that potentially reduce your co-pay for their injectors down to $0. (This depends on your insurance.) Regardless of which medication you prefer, do check out the coupons. You might be able to arm your kids' classrooms, lunchrooms, and main offices with more epinephrine injectors at no or minimal cost to you.
What are some changes that you have made in getting ready for the new school year?
August 30, 2013
Why Do Kids Have to Eat Peanut Butter At School?
Why do kids have to eat peanut butter at school? This is such a controversial subject in the food allergy world, though I can't for the life of me figure out why it's so heated. I've read the reactions to food allergy parents who have given their opinions in the past. I know what peanut butter advocates think. I know that on the extreme side of this argument, peanut advocates think that severely food allergic children should not even be allowed in school--that they should be homeschooled. In fact, I've heard this opinion so many times that this type of verbiage no longer fazes me.
How many times have I heard a parent say, "But she'll only eat peanut butter for lunch!" I just can't figure this out. Because if my kid looked at me and told me he would only eat one thing for lunch, and that one thing was something that could potentially kill another student, I'd tell him no way. Forget that, if my kid told me he would eat only one thing for lunch, period, I would tell him no, that's not acceptable.
I just can't wrap my head around parents who insist that peanut butter sandwiches are the end all. Do their kids eat these for breakfast and dinner too? Do they have a peanut butter sandwich waiting for them when they get home for snack?
Okay okay, I get it, I do. People have rights. They want to eat peanuts and they should eat peanuts. Just not at school. There are personal rights and then there's social responsibility. What are we teaching our children if we're only teaching them one side of the coin?
I mean, if my son was playing in the park with friends, found a long sharp stick and proceeded to wave it around recklessly at the other kids, I would tell him to put it down. Sure, he has the right to play with sticks, just not around other kids. Hey, it's unlikely that he'll poke someone's eye out, but it's possible. He could also unnecessarily scratch or puncture someone. Wouldn't we rather avoid the risk altogether and tell the boy to put the stick down? Or would we all sit around on the edge of our seats waiting to see what would happen? If your child was the one with the stick pointed at her, would you just sit around and do nothing so as not to offend the rights of the stick-brandishing child or his parents?
Do we share the responsibility of helping to keep our kids safe? Every day, my kids go to school and I pray that I don't get a phone call from the school office. When I see the number flashing on my phone, I'm immediately filled with dread. I'm hoping the caller is not about to describe an allergic reaction, and that I won't need to rush myself over to the pediatric ER to meet my child.
So why the peanut butter? Of course, 99.9% of the time, peanut butter sandwiches in the school cafeteria aren't hurting anyone. It's the less than one percent of the time, the time that after eating a peanut butter sandwich, a classmate accidentally spits into the mouth of a peanut-allergic child during a conversation they are having in line about to leave the cafeteria.
Yep, it happened to my kid, yesterday at school.
Within moments, my son developed a stomach ache, told the principal, and was whisked away to the office. While I was on the phone with the principal (thank God I answered my cell!), my son reported trouble breathing, so I told him he needed the epinephrine injection, which my son administered himself. I told the principal that he needed to go directly to the ER, and I would meet him there.
My 9-year-old son is officially a rock star. He recognized his symptoms, got help, related his symptoms clearly, and administered the Auvi-Q auto-injector successfully and calmly. He rode an ambulance alone to the ER, readied himself for a four hour stay, and worried that he didn't have his books to do his homework.
Why can't we just say that there are no nuts allowed in school? Because we know people won't follow the rules? Because we know people won't like it? Because we're worried about people's right to eat what they want for lunch?
All schools have drop-off and pick-up procedures which are not to everyone's liking, and which are probably going to be challenged by a few parents, but we still have them. We have them because we know it's the right thing to do, and because we know if we didn't, we'd have a lot more accidents. If we could avoid just one accident with rules about how to pick up our children from school, would that help to justify their existence? Do we even feel the need to quantify how safe we could be with the implementation of a particular rule?
How many food allergy accidents have to happen before we change our food policies at school?
I don't think most people mean to put food allergic children at higher risk of reaction at school; I just think they don't understand. They haven't had to respond to an emergency situation--adrenaline pumping, hands shaking. They haven't had to live through the ups and downs of managing food allergies on a daily basis, spend literally thousands of dollars every year on medications, ER visits, and specialty foods...in a constant state of worry.
I've always known that food allergy education is a slow evolution. One step forward, two steps back. We had our two steps back yesterday, I'm looking forward to that step forward.
How many times have I heard a parent say, "But she'll only eat peanut butter for lunch!" I just can't figure this out. Because if my kid looked at me and told me he would only eat one thing for lunch, and that one thing was something that could potentially kill another student, I'd tell him no way. Forget that, if my kid told me he would eat only one thing for lunch, period, I would tell him no, that's not acceptable.
I just can't wrap my head around parents who insist that peanut butter sandwiches are the end all. Do their kids eat these for breakfast and dinner too? Do they have a peanut butter sandwich waiting for them when they get home for snack?
Okay okay, I get it, I do. People have rights. They want to eat peanuts and they should eat peanuts. Just not at school. There are personal rights and then there's social responsibility. What are we teaching our children if we're only teaching them one side of the coin?
I mean, if my son was playing in the park with friends, found a long sharp stick and proceeded to wave it around recklessly at the other kids, I would tell him to put it down. Sure, he has the right to play with sticks, just not around other kids. Hey, it's unlikely that he'll poke someone's eye out, but it's possible. He could also unnecessarily scratch or puncture someone. Wouldn't we rather avoid the risk altogether and tell the boy to put the stick down? Or would we all sit around on the edge of our seats waiting to see what would happen? If your child was the one with the stick pointed at her, would you just sit around and do nothing so as not to offend the rights of the stick-brandishing child or his parents?
Do we share the responsibility of helping to keep our kids safe? Every day, my kids go to school and I pray that I don't get a phone call from the school office. When I see the number flashing on my phone, I'm immediately filled with dread. I'm hoping the caller is not about to describe an allergic reaction, and that I won't need to rush myself over to the pediatric ER to meet my child.
So why the peanut butter? Of course, 99.9% of the time, peanut butter sandwiches in the school cafeteria aren't hurting anyone. It's the less than one percent of the time, the time that after eating a peanut butter sandwich, a classmate accidentally spits into the mouth of a peanut-allergic child during a conversation they are having in line about to leave the cafeteria.
Yep, it happened to my kid, yesterday at school.
Within moments, my son developed a stomach ache, told the principal, and was whisked away to the office. While I was on the phone with the principal (thank God I answered my cell!), my son reported trouble breathing, so I told him he needed the epinephrine injection, which my son administered himself. I told the principal that he needed to go directly to the ER, and I would meet him there.
My 9-year-old son is officially a rock star. He recognized his symptoms, got help, related his symptoms clearly, and administered the Auvi-Q auto-injector successfully and calmly. He rode an ambulance alone to the ER, readied himself for a four hour stay, and worried that he didn't have his books to do his homework.
Why can't we just say that there are no nuts allowed in school? Because we know people won't follow the rules? Because we know people won't like it? Because we're worried about people's right to eat what they want for lunch?
All schools have drop-off and pick-up procedures which are not to everyone's liking, and which are probably going to be challenged by a few parents, but we still have them. We have them because we know it's the right thing to do, and because we know if we didn't, we'd have a lot more accidents. If we could avoid just one accident with rules about how to pick up our children from school, would that help to justify their existence? Do we even feel the need to quantify how safe we could be with the implementation of a particular rule?
How many food allergy accidents have to happen before we change our food policies at school?
I don't think most people mean to put food allergic children at higher risk of reaction at school; I just think they don't understand. They haven't had to respond to an emergency situation--adrenaline pumping, hands shaking. They haven't had to live through the ups and downs of managing food allergies on a daily basis, spend literally thousands of dollars every year on medications, ER visits, and specialty foods...in a constant state of worry.
I've always known that food allergy education is a slow evolution. One step forward, two steps back. We had our two steps back yesterday, I'm looking forward to that step forward.
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