I have not blogged in a while. Not that I don't have things to say or comments about the allergy world, but it's a time issue. Honestly I should make time. Blogging can be therapeutic and very powerful. I hope I have an audience today because I have a lot to say.
EpiPens are non-negotiable items at my house. Molly has used them on more occasions that I'd like to remember. You can't really put a price on the life saving medication epinephrine.
Unfortunately, companies like Mylan know that most parents of children who need an EpiPen are going to be buying them regardless of cost. I know as a mom of a child who has had anaphylactic reactions in the past, we will have a minimum of two- regardless of cost. They have us. We have no choice. Which brings me to my other points:
There is no competition for EpiPen. Since Auvi-Q is no longer on the market, there is little incentive for Mylan to even try to have competitive pricing. I guess there is an auto injector called Adrenaclick. The problem with this, is if you have a child in school they may not be as familiar with this. The thing I loved about Auvi-Q is that it was idiot-proof. Even if you weren't familiar with it, it talked you through it. This made it more user friendly and people were more comfortable with the idea of sticking my kid. I don't know about you, but as the mom of a food allergic kid, I want the adults my kid is around to be comfortable with using her auto-injector device so they will use it if there is an emergency situation. EpiPen advertises more than Adrenaclick, people know what an EpiPen is and what it is used for. In schools, that is what the nurse trains staff with. EpiPen is the brand people are MOST familiar with and are more comfortable using.
Next, I want people to understand that we don't buy just one EpiPen. They come 2 pens to pak- in case one doesn't work or you need another shot of epinephrine before EMS arrives. Most families actually need to buy multiple paks. Molly's school requires that she has 2 in the nurse's office, Molly carries 2 on her at all times and I have a back up pak at home in case she uses one. It isn't unusual for the pharmacy to take 24 hours to get new EpiPens, due to issues with expiration dates. That is 3 paks we have at all times. The going rate that I'm hearing is $600 as pak. That's $1800 a year minimum- more if we have to use one or if they have an expiration date less than a year from the time of purchase (usually if this occurs I have the pharmacy send it back for one with a better expiration date)
Now that we are talking about the cost of the Epi-Pen, insurance comes into play. We for example have a high deductible plan- we are fully responsible for the first $2600. Luckily, Matt's employer puts $2500 into our Health Savings Account in addition to what we put into it. After we meet the deductible we pay 20-50% of prescription cost. We have also had issues with the deductible and using coupons in the past- essentially with insurance saying it can't count towards the deductible if we use a discount- any of it. It's been hit and miss- sometimes it's okay sometimes it's not okay. It's kind of a nightmare. We have been on insurance plans previously that medications were not included in our deductible or out of pocket maximum- kind of like prescriptions were it's own little benefit group. That was super expensive. I have also had the insurance company argue with me about getting more than one epi-pen set at a time. This is super super frustrating. Molly's pediatrician now writes the prescription for 3 paks of EpiPens- one for home, one for school and one for child care with one refill. They do not seem to question this.
Now that I've mentioned the coupon, up until today I believe they only covered up to a $100 co-pay amount. That means if you have a high deductible plan, you are more than likely going to be paying $500 for one pak. I read today that they have increased the amount to $300 but that still means you will be paying $300 for one pak...
So- what is the answer? I'm not sure. We actually switched to Auvi-Q (no longer available) when it came out because our prescription plan paid a better percentage for it than the EpiPen. Now that I feel like we have no choice but to use EpiPen, I want to know why the cost has gone up. The CEO gave several reasons today when she announced the extension of the assistance program and $300 coupon, but none of them were really specific. I felt like I was getting excuses as to why Mylan is exorbitantly profiting off of a life saving drug.
Which brings me to my next point. Why are we allowing drug companies to make ridiculous profits on life saving medications? When did this become okay? Mylan knows that parents and anyone with a life threatening allergy are going to buy this product- actually they know better than anyone- how many of these products we are going to buy- because let's face it- at a minimum you will have two paks of EpiPens for a school aged child. They know they have almost no competition. This puts them in a position of power.
This is my challenge to Mylan: DO THE RIGHT THING. Use your power for good. Either lower your price or give consumers proper documentation of reasons for the sky-rocketing price increase. You wanted to blame it a broken health care system- give us specifics so we can encourage our legislators to fix it. Help us, help you.
And lastly, this is not the first time in the last year that a pharmaceutical company has raised drug prices an exorbitant amount with no reason really given(HIV drugs and antivirals). Healthcare should not be a for profit business. I understand that nothing is for free, but healthcare companies and pharmaceuticals should not be profiting while the American people are struggling to pay for life saving non-negotiable-gotta have it medications and services. Talk to legislators and lawmakers- lobby and advocate for your own healthcare interest because you know that Mylan and other pharmaceutical companies are! This included voting- I don't care who you vote for just VOTE!
Excuse me while I step off my soapbox now and get back to my very busy day.
Thursday, August 25, 2016
Saturday, May 9, 2015
Update
Update:
It's been over a week since the peanut butter at school incident occurred. The principal has still not spoken with me directly and Molly has encountered this substitute twice with no apology from her. I feel like the issue is being avoided- which is so irritating. When my child breaks a rule or does something wrong I make her apologize. I think that adults should do the same. By not apologizing you are giving kids mixed messages and they are less likely to do the right thing next time. I also feel by not apologizing the school and the substitute teacher are showing total disregard for my child and her peanut allergy (and did I mention her 504 plan failed her in this instance?!). The regular classroom teacher told me that the kids do not like this substitute pretty much based on this incident and her attitude towards them. Maybe if she APOLOGIZED, the kids would see she actually does care about them, that she can show humility and empathy, she can admit adults can make mistakes too, and they would actually like her...just a thought.
SIDE NOTE: I have told Molly that under no circumstance is she to be rude or unkind. I don't expect her to be overly friendly, because she seems to intimidated by this woman, but I will not tolerate her being rude. If their is a problem from here on out she is to go to the office or go to the bathroom and call me on her cell phone. I am also considering having these instructions put into a 504 plan, just so she feels more comfortable because this is causing her anxiety.
It's been over a week since the peanut butter at school incident occurred. The principal has still not spoken with me directly and Molly has encountered this substitute twice with no apology from her. I feel like the issue is being avoided- which is so irritating. When my child breaks a rule or does something wrong I make her apologize. I think that adults should do the same. By not apologizing you are giving kids mixed messages and they are less likely to do the right thing next time. I also feel by not apologizing the school and the substitute teacher are showing total disregard for my child and her peanut allergy (and did I mention her 504 plan failed her in this instance?!). The regular classroom teacher told me that the kids do not like this substitute pretty much based on this incident and her attitude towards them. Maybe if she APOLOGIZED, the kids would see she actually does care about them, that she can show humility and empathy, she can admit adults can make mistakes too, and they would actually like her...just a thought.
SIDE NOTE: I have told Molly that under no circumstance is she to be rude or unkind. I don't expect her to be overly friendly, because she seems to intimidated by this woman, but I will not tolerate her being rude. If their is a problem from here on out she is to go to the office or go to the bathroom and call me on her cell phone. I am also considering having these instructions put into a 504 plan, just so she feels more comfortable because this is causing her anxiety.
Wednesday, May 6, 2015
WWMD? (What Would Mom Do?)
I haven't written in a while. Life is just busy, busy. It's difficult to keep up with blogging and manage a house with three little girls! I also have realized some of our OIT experiences are hard to write about as they are very emotional for me. I hate feelings of conflict and this is a underlying emotion for me during this process. All though Molly is doing well in the program, I always come back to that underlying feeling of "more is more." I promise I will update y'all later...because oit isn't what this blog is about today.
Recently we had an incident at school. Molly is in a peanut/treenut free classroom. She has her own desk in each classroom because the kids do bring peanut butter to lunch. She has her own designated table in the cafeteria and no one is allowed to eat peanut butter at her table. I provide wet wipes to the classrooms so if kids have been eating peanuts or treenuts at lunch they can wipe their hands. Her teachers encourage the kids to wash their hands often. Her regular teachers, nurse, secretaries, principal are fabulous this year. I couldn't ask for better people.
On this particular sunny day in Texas, Molly had a substitute teacher in one of her classes. The substitute was eating peanut butter in the classroom. Molly's friends saw this and became concerned. They know the rules and that peanut butter is not allowed in the classroom. They have also seen Molly leave school in an ambulance this year, so they know peanuts and tree nuts can make Molly really, really sick. Being the awesome, awesome kids they are, they decide to let the teacher know that Molly has a serious peanut allergy and peanuts aren't allowed in the classroom. Again, let me say- THESE KIDS ARE THE BEST!!! A little girl goes to the desk, because they want to keep Molly as far from the peanut butter as possible and explains the situation to the substitute teacher. I will paraphrase the response because I wasn't there, but have heard what she said from multiple kids at this point, "I'm an adult. I am not allergic to peanuts. I think I can take care of myself, go sit back down."
I'll give you a minute to close your gaping mouth because I'm sure even non food allergic people are like I-cannot-beleive-she-said-that-to-a-child-trying-to-protect-another-child...yep, I was shocked too.
SO- fast forward to after school and Molly and her bestie are telling me about their day as I'm getting the kids off the bus- and her bestie blurts this story out to me and I'm irritated. I ask Molly what she did at that point. And her response was most upsetting to me. "I sat their mom, I sat and worried and hoped she wouldn't touch me or I wouldn't have to go up to the desk." Then, I started asking her questions- why didn't she ask to go to the bathroom and then go get another one of her regular teachers? Why didn't she go to the nurse? Why didn't she call or text me? Her response: "I was afraid and scarred I would get in trouble because I was telling on an adult."
I was sad and angry that my child feels this way. Adults make mistakes. This was a huge mistake!!!
Molly and I had a long discussion about keeping herself safe. She should have spoken up. If the adult doesn't listen, find another adult who will, even if that means leaving the classroom without permission, If all else fails, she needs to call me, and I will contact an adult or remove her from the situation.
The next day, the teacher who had been absent and her regular classroom teacher contacted me to apologize for the situation and to let me know it would never happen again. None of the kids told any of the other regular teachers that day. It wasn't until the next day that they mentioned it. They all new the situation was wrong, but an adult told them they were the ones who were wrong. Another little girl in the class told the regular teacher that she had thought about going to get the math teacher but was afraid of getting in trouble. Fear of getting in trouble stopped my child from protecting herself. Fear of getting in trouble stopped the other kids from telling that someone was breaking a serious safety rule.
The regular classroom teacher talked to all of the kids. She told them protecting a life trumps getting in trouble, even if the person who is breaking a rule is an adult. She told them they wouldn't be in trouble. The school nurse told Molly that if this ever happens again or she is unsafe to ask to go to the bathroom, if she isn't allowed, she just politely leaves and finds another adult.
I requested that the little girl who spoke up for Molly gets a reward or some kind of recognition. It's hard enough to do the right thing when you are 10, and I wanted her to know that speaking up is always the right thing if you are protecting someone from danger. The teachers made sure she was recognized and rewarded.
I also asked that the substitute apologize to Molly and the other girl for being rude and uncaring, as well as insensitive. This has not happened. I was made aware that the substitute had been spoken to by the principal and others, and that she was sorry, and her excuse was "kids try to push your buttons when you are a substitute." This woman is going to be a full time teacher next year. I hope she has learned from this you do need to listen to kids, and yes, they do push buttons, but you need to confirm or deny things of importance, like oh you know, life threatening food allergies.
So this is where WWMD? comes in to play. Do I push for an apology? I'm not asking that she be fired, I'm not trying to ruin her career, and I haven't even said STAY AWAY FROM MY KID!!! I just want her to tell Molly that she is sorry, and I want her to tell the little girl that she was rude to sorry as well. I want my child and her classmates to know that adults don't always get it right. Adults make mistakes. Sometimes HUGE mistakes that have HUGE consequences. Luckily, this mistake did not have a huge consequence, but it could have. I want these kids to see that even when you unknowingly make a mistake, you should still take ownership of it and say you are sorry.
I know by asking the internet world what you think I'm opening myself up for criticism. I want to state a few things that as a food allergy mama I have heard a gazillion times...
-I am not preparing her for the real world by keeping her away from peanuts and making others accommodate her needs. I disagree. I am trying to keep her safe. School isn't the real world. In the real world, if you are in a situation at where the food isn't safe, you can get up and move. You can ask a coworker not to eat peanuts at your desk. WE have been in situations before as a family at sporting events and movies where those around us were eating peanuts. We don't ask them to move, we move. We can control that situation. School is different and it's mandatory and the federal government considers food allergies to be covered under ADA,IDEA, and Section 504 so legally, she is protected by law.
-It can't be that serious. It is. She is an OIT program (desentization) because we want to make things safe for her. She has had a known peanut allergy since she was 6 months old and I got peanut butter on her from a bagel I was eating and she had a very serious reaction. We were referred to a pediatric allergist and given and epi pen. She has had numerous ER trips due to her food allergies. We actually moved to TEXAS from INDIANA so she could participate in a program that treats foods allergies and makes them better.
-Why don't you home school her? So you want me to make her live in the real world but home school her and keep her away from her peers and what most normal kids do, which is go to school?? We try our best to teach her how to live and protect herself. She self carries Auvi-Q. She knows how to give it to herself and has. She knows if she doesn't know what is in it she can't eat it. She asks questions and reads food labels and if she isn't sure and can't reach mom, she doesn't eat it. She carries wet wipes with her where ever she goes and asks her friends and family to use them if necessary. We are talking more and more about leaving an unsafe area. As I said before we are doing OIT to desensitize her to nuts and tree nuts, but we have not been given a green light by her allergist to stop worrying yet and to stop precautions to keep her her safe.
So, as a mom what would you do if it was your child?
Recently we had an incident at school. Molly is in a peanut/treenut free classroom. She has her own desk in each classroom because the kids do bring peanut butter to lunch. She has her own designated table in the cafeteria and no one is allowed to eat peanut butter at her table. I provide wet wipes to the classrooms so if kids have been eating peanuts or treenuts at lunch they can wipe their hands. Her teachers encourage the kids to wash their hands often. Her regular teachers, nurse, secretaries, principal are fabulous this year. I couldn't ask for better people.
On this particular sunny day in Texas, Molly had a substitute teacher in one of her classes. The substitute was eating peanut butter in the classroom. Molly's friends saw this and became concerned. They know the rules and that peanut butter is not allowed in the classroom. They have also seen Molly leave school in an ambulance this year, so they know peanuts and tree nuts can make Molly really, really sick. Being the awesome, awesome kids they are, they decide to let the teacher know that Molly has a serious peanut allergy and peanuts aren't allowed in the classroom. Again, let me say- THESE KIDS ARE THE BEST!!! A little girl goes to the desk, because they want to keep Molly as far from the peanut butter as possible and explains the situation to the substitute teacher. I will paraphrase the response because I wasn't there, but have heard what she said from multiple kids at this point, "I'm an adult. I am not allergic to peanuts. I think I can take care of myself, go sit back down."
I'll give you a minute to close your gaping mouth because I'm sure even non food allergic people are like I-cannot-beleive-she-said-that-to-a-child-trying-to-protect-another-child...yep, I was shocked too.
SO- fast forward to after school and Molly and her bestie are telling me about their day as I'm getting the kids off the bus- and her bestie blurts this story out to me and I'm irritated. I ask Molly what she did at that point. And her response was most upsetting to me. "I sat their mom, I sat and worried and hoped she wouldn't touch me or I wouldn't have to go up to the desk." Then, I started asking her questions- why didn't she ask to go to the bathroom and then go get another one of her regular teachers? Why didn't she go to the nurse? Why didn't she call or text me? Her response: "I was afraid and scarred I would get in trouble because I was telling on an adult."
I was sad and angry that my child feels this way. Adults make mistakes. This was a huge mistake!!!
Molly and I had a long discussion about keeping herself safe. She should have spoken up. If the adult doesn't listen, find another adult who will, even if that means leaving the classroom without permission, If all else fails, she needs to call me, and I will contact an adult or remove her from the situation.
The next day, the teacher who had been absent and her regular classroom teacher contacted me to apologize for the situation and to let me know it would never happen again. None of the kids told any of the other regular teachers that day. It wasn't until the next day that they mentioned it. They all new the situation was wrong, but an adult told them they were the ones who were wrong. Another little girl in the class told the regular teacher that she had thought about going to get the math teacher but was afraid of getting in trouble. Fear of getting in trouble stopped my child from protecting herself. Fear of getting in trouble stopped the other kids from telling that someone was breaking a serious safety rule.
The regular classroom teacher talked to all of the kids. She told them protecting a life trumps getting in trouble, even if the person who is breaking a rule is an adult. She told them they wouldn't be in trouble. The school nurse told Molly that if this ever happens again or she is unsafe to ask to go to the bathroom, if she isn't allowed, she just politely leaves and finds another adult.
I requested that the little girl who spoke up for Molly gets a reward or some kind of recognition. It's hard enough to do the right thing when you are 10, and I wanted her to know that speaking up is always the right thing if you are protecting someone from danger. The teachers made sure she was recognized and rewarded.
I also asked that the substitute apologize to Molly and the other girl for being rude and uncaring, as well as insensitive. This has not happened. I was made aware that the substitute had been spoken to by the principal and others, and that she was sorry, and her excuse was "kids try to push your buttons when you are a substitute." This woman is going to be a full time teacher next year. I hope she has learned from this you do need to listen to kids, and yes, they do push buttons, but you need to confirm or deny things of importance, like oh you know, life threatening food allergies.
So this is where WWMD? comes in to play. Do I push for an apology? I'm not asking that she be fired, I'm not trying to ruin her career, and I haven't even said STAY AWAY FROM MY KID!!! I just want her to tell Molly that she is sorry, and I want her to tell the little girl that she was rude to sorry as well. I want my child and her classmates to know that adults don't always get it right. Adults make mistakes. Sometimes HUGE mistakes that have HUGE consequences. Luckily, this mistake did not have a huge consequence, but it could have. I want these kids to see that even when you unknowingly make a mistake, you should still take ownership of it and say you are sorry.
I know by asking the internet world what you think I'm opening myself up for criticism. I want to state a few things that as a food allergy mama I have heard a gazillion times...
-I am not preparing her for the real world by keeping her away from peanuts and making others accommodate her needs. I disagree. I am trying to keep her safe. School isn't the real world. In the real world, if you are in a situation at where the food isn't safe, you can get up and move. You can ask a coworker not to eat peanuts at your desk. WE have been in situations before as a family at sporting events and movies where those around us were eating peanuts. We don't ask them to move, we move. We can control that situation. School is different and it's mandatory and the federal government considers food allergies to be covered under ADA,IDEA, and Section 504 so legally, she is protected by law.
-It can't be that serious. It is. She is an OIT program (desentization) because we want to make things safe for her. She has had a known peanut allergy since she was 6 months old and I got peanut butter on her from a bagel I was eating and she had a very serious reaction. We were referred to a pediatric allergist and given and epi pen. She has had numerous ER trips due to her food allergies. We actually moved to TEXAS from INDIANA so she could participate in a program that treats foods allergies and makes them better.
-Why don't you home school her? So you want me to make her live in the real world but home school her and keep her away from her peers and what most normal kids do, which is go to school?? We try our best to teach her how to live and protect herself. She self carries Auvi-Q. She knows how to give it to herself and has. She knows if she doesn't know what is in it she can't eat it. She asks questions and reads food labels and if she isn't sure and can't reach mom, she doesn't eat it. She carries wet wipes with her where ever she goes and asks her friends and family to use them if necessary. We are talking more and more about leaving an unsafe area. As I said before we are doing OIT to desensitize her to nuts and tree nuts, but we have not been given a green light by her allergist to stop worrying yet and to stop precautions to keep her her safe.
So, as a mom what would you do if it was your child?
 |
| My Molly being a silly, normal 10 year old |
Sunday, August 24, 2014
Reflections: Face of Food Allergies
The responses written to The No Nut Traveler in reference to the article that appeared on Yahoo were absolutely appalling. All that was being asked was for fair and consistent policies from the airlines in regards to traveling with nut allergies. No one was asking for anything unreasonable. Being able to BREATHE and LIVE isn't an "entitlement" as some like to call it. Unfortunately for people like my daughter, others often feel that their right to eat whatever they want whenever they want wherever they want trumps her right to LIVE. Guess what? IT DOES NOT. HUMAN LIFE COMES FIRST. ALWAYS. I cannot believe I have spent two days even blogging about this??!! Isn't this common sense?!?!
After reflecting on yesterday's blog, I decided that food allergies need a face. I am hoping that giving a face to food allergies will help others to recognize that people with food allergies are people YOU probably see and come in contact with everyday. I hope that putting a face with food allergies will show that the negative and rude responses ARE PERSONAL to us- that these allergies are truly life and death. These people with food allergies are our families, children, co-workers, friends, and neighbors. Food allergies could easily effect you or your family- the face in the picture could be you or your child.
I am asking that if you are comfortable sharing a picture of your loved one with a food allergy on social media, you do so and pass it on :-) I shared my beautiful picture of Molly on Twitter, using the hashtag #faceoffoodallergies
After reflecting on yesterday's blog, I decided that food allergies need a face. I am hoping that giving a face to food allergies will help others to recognize that people with food allergies are people YOU probably see and come in contact with everyday. I hope that putting a face with food allergies will show that the negative and rude responses ARE PERSONAL to us- that these allergies are truly life and death. These people with food allergies are our families, children, co-workers, friends, and neighbors. Food allergies could easily effect you or your family- the face in the picture could be you or your child.
I am asking that if you are comfortable sharing a picture of your loved one with a food allergy on social media, you do so and pass it on :-) I shared my beautiful picture of Molly on Twitter, using the hashtag #faceoffoodallergies
Saturday, August 23, 2014
FLYING in MY SHOES
I decided to blog today not about OIT but about food allergies and airlines. This is something that does effect Molly AND I won't lie, it's difficult to fly. This topic has recently received global exposure because two beautiful little girls with food allergies had reactions on planes. My heart goes out to their families because I understand that feeling of terror when you realize your child is having a reaction that requires epinephrine. I cannot imagine the feeling of terror and panic they must have felt not only from the reaction but from knowing that you are on a plane and you cannot immediately remove your child and get them the medical attention they require in the Emergency Room.
The No Nut Traveler has been speaking out on this issue since an airline company was not only rude but spoke in a very inappropriate manner in front of her son. As a food allergy mama myself, I know that we DO NOT in fact need the airline staff to remind us that yes, our children's allergies COULD in fact KILL them. We pretty much had that covered the first time we saw one of our children struggling to breathe because they were exposed to peanut or nut. We had that covered as they are gasping or wheezing, covered with hives and we our using our Epi-pens or Auvi-Q's and rushing to inject them with life saving epinephrine, calling 9-1-1, and praying it's enough to save their lives. Yeah, I guess you could say we kind of figured out that a simple little nut could kill them the hard way. For me, that moment was when my daughter was 7months old and I got a small smear of peanut butter on her skin from a bagel I was eating...a few minutes later we are in the ER because she couldn't breathe, developed a mark on her skin where the peanut butter had been similar to a cigarette burn, hives, and swollen puffy eyes. We left the ER that day with a prescription for an Epi-pen and a changed life. HOW COULD SOMETHING SO SMALL- SO COMMON- come so close to causing death to my little girl?
So- now that we have that covered I want to address the responses to this article:
https://www.yahoo.com/travel/airlines-and-nut-allergies-95399512052.html?soc_src=mags
First and foremost- all though I know it might be a slight inconvenience, I hope that you can respect that a person's right to live trumps your right to eat nuts wherever you want always. PERIOD. END OF SUBJECT.
Epi-pens and Auvi-Q's are temporary solutions. Sometimes they don't work. Sometimes CHILDREN and adults die. They have to be given quickly after exposure and require immediate medical care in an Emergency Room. At the ER most likely we will get more Epi, steroids, antihistamines, nebulizer treatments, oxygen, and hopefully that will be enough to overcome the allergy exposure.
I am not flying to inconvenience you or anybody else. This past year, we had to fly for my daughter to receive medical treatment for her food allergies. Sometimes we have emergencies, deaths in the family, rush medical appointments and we have to fly. Since we have a global economy, it is not uncommon for ALL people, including those with food allergies to fly. Sometimes we just have to fly because we need to get where we need to go too.
I hate to fly- and I hate to fly even more with my daughter's nut allergies. We alert the airline that she has nut allergies and carries and epi auto injector when booking flights. We were told to alert the agent at the desk on arrival, have notes from your doctor, original prescription labels on her auto-injectors. We did all this. And were told, there is NOTHING I can do about nuts on the plane, we don't serve peanuts <<insert desk agent eye roll>> OK. I, as her mom, can wipe down seats and put a blanket on them. I can do things to make her "more safe.". BUT please don't be rude to me--I am not asking you personally to do anything just to be aware-- AIRLINES serve food just like restaurants and we ALWAYS tell our server that we have peanut and nut allergies-- if there is food-- speak up!! When you are in the air- unable to get to a hospital wouldn't it be good for the flight attendant to know that she carries and Epi auto injector just in case she needs it??!?? I am training her to be responsible with her food allergies- she will be grown up someday and I won't be there by here side all the time. She needs to know how to keep herself safe and how to SPEAK UP for herself. So please, keep your rude remarks to yourself.
Most airlines that still serve snacks could offer an alternative to peanuts or nuts. Some already do. Most food allergy families carry tons of yummy alternative snacks and would share our prepackaged safe snacks with you so you don't eat that snickers bar and cause someone to have a serious allergic reaction.
And as for the comments about how families suffering from food allergies live their lives, most of us make accommodations in our lives that YOU would NEVER, IN A MILLION YEARS, think about. We read every food label every time at least three times, we can tell you at least 2 other words that mean hidden peanut or nuts on food labels, we know where to buy safe substitutes for most things, we have moved seats at baseballs games and other sporting events so that we don't inconvenience you if you are eating nuts, we wipe down seats, toys, and playground equipment not because we are helicopter moms, but because your child just ate peanut butter and put xx in his or her mouth or didn't wash his or her hands and has visible peanut butter and then touched the movie seat next to my daughter... we don't eat out without careful planning and we don't go to Chikfilet, or Five Guys, or Texas Roadhouse. We ask about oils and what's in things-- we ask about cross contamination. We don't go to bakeries or donut shops. Trips and vacations require months of planning for safe accommodations, restaurants and activities-- our lives require lots of planning- and PRAYER, because we take chances everyday, because FOOD is everywhere- and to us something like a peanut or walnuts or cashew--or even a cookie or sandwich could harm our children.
As far as nut allergies and the plane- all we are asking is for consistent rules and minor accommodations. Everyone should have the RIGHT to be safe when traveling on a plane. END OF SUBJECT.
The No Nut Traveler has been speaking out on this issue since an airline company was not only rude but spoke in a very inappropriate manner in front of her son. As a food allergy mama myself, I know that we DO NOT in fact need the airline staff to remind us that yes, our children's allergies COULD in fact KILL them. We pretty much had that covered the first time we saw one of our children struggling to breathe because they were exposed to peanut or nut. We had that covered as they are gasping or wheezing, covered with hives and we our using our Epi-pens or Auvi-Q's and rushing to inject them with life saving epinephrine, calling 9-1-1, and praying it's enough to save their lives. Yeah, I guess you could say we kind of figured out that a simple little nut could kill them the hard way. For me, that moment was when my daughter was 7months old and I got a small smear of peanut butter on her skin from a bagel I was eating...a few minutes later we are in the ER because she couldn't breathe, developed a mark on her skin where the peanut butter had been similar to a cigarette burn, hives, and swollen puffy eyes. We left the ER that day with a prescription for an Epi-pen and a changed life. HOW COULD SOMETHING SO SMALL- SO COMMON- come so close to causing death to my little girl?
So- now that we have that covered I want to address the responses to this article:
https://www.yahoo.com/travel/airlines-and-nut-allergies-95399512052.html?soc_src=mags
First and foremost- all though I know it might be a slight inconvenience, I hope that you can respect that a person's right to live trumps your right to eat nuts wherever you want always. PERIOD. END OF SUBJECT.
Epi-pens and Auvi-Q's are temporary solutions. Sometimes they don't work. Sometimes CHILDREN and adults die. They have to be given quickly after exposure and require immediate medical care in an Emergency Room. At the ER most likely we will get more Epi, steroids, antihistamines, nebulizer treatments, oxygen, and hopefully that will be enough to overcome the allergy exposure.
I am not flying to inconvenience you or anybody else. This past year, we had to fly for my daughter to receive medical treatment for her food allergies. Sometimes we have emergencies, deaths in the family, rush medical appointments and we have to fly. Since we have a global economy, it is not uncommon for ALL people, including those with food allergies to fly. Sometimes we just have to fly because we need to get where we need to go too.
I hate to fly- and I hate to fly even more with my daughter's nut allergies. We alert the airline that she has nut allergies and carries and epi auto injector when booking flights. We were told to alert the agent at the desk on arrival, have notes from your doctor, original prescription labels on her auto-injectors. We did all this. And were told, there is NOTHING I can do about nuts on the plane, we don't serve peanuts <<insert desk agent eye roll>> OK. I, as her mom, can wipe down seats and put a blanket on them. I can do things to make her "more safe.". BUT please don't be rude to me--I am not asking you personally to do anything just to be aware-- AIRLINES serve food just like restaurants and we ALWAYS tell our server that we have peanut and nut allergies-- if there is food-- speak up!! When you are in the air- unable to get to a hospital wouldn't it be good for the flight attendant to know that she carries and Epi auto injector just in case she needs it??!?? I am training her to be responsible with her food allergies- she will be grown up someday and I won't be there by here side all the time. She needs to know how to keep herself safe and how to SPEAK UP for herself. So please, keep your rude remarks to yourself.
Most airlines that still serve snacks could offer an alternative to peanuts or nuts. Some already do. Most food allergy families carry tons of yummy alternative snacks and would share our prepackaged safe snacks with you so you don't eat that snickers bar and cause someone to have a serious allergic reaction.
And as for the comments about how families suffering from food allergies live their lives, most of us make accommodations in our lives that YOU would NEVER, IN A MILLION YEARS, think about. We read every food label every time at least three times, we can tell you at least 2 other words that mean hidden peanut or nuts on food labels, we know where to buy safe substitutes for most things, we have moved seats at baseballs games and other sporting events so that we don't inconvenience you if you are eating nuts, we wipe down seats, toys, and playground equipment not because we are helicopter moms, but because your child just ate peanut butter and put xx in his or her mouth or didn't wash his or her hands and has visible peanut butter and then touched the movie seat next to my daughter... we don't eat out without careful planning and we don't go to Chikfilet, or Five Guys, or Texas Roadhouse. We ask about oils and what's in things-- we ask about cross contamination. We don't go to bakeries or donut shops. Trips and vacations require months of planning for safe accommodations, restaurants and activities-- our lives require lots of planning- and PRAYER, because we take chances everyday, because FOOD is everywhere- and to us something like a peanut or walnuts or cashew--or even a cookie or sandwich could harm our children.
As far as nut allergies and the plane- all we are asking is for consistent rules and minor accommodations. Everyone should have the RIGHT to be safe when traveling on a plane. END OF SUBJECT.
Molly sitting at the airport waiting to board our flight
Thursday, August 21, 2014
...and we're back LIVE from the LONE STAR state
We are back- finally! Sorry it's taken so long to update everyone. Unfortunately, it took 3 months to get internet service in our new home. It was a complete nightmare, lots of tears have been shed over internet access and the lack there of- but now it's over and AT&T FINALLY came through.
Molly is doing well with updosing. We have had only had one set back and it was actually this week. This week we progressed to eating one whole cashew. I'm not sure if it was nerves or if she just wasn't ready yet, but the cashew caused her to vomit. So we tried a 2nd dose and again Molly immediately started vomiting. After talking to Dr. Sugerman, we decided the best course of action would be to go back a dose, back to the capsules of cashew flour and not the whole nut. Molly has taken that dose with no issue today so hopefully we are back on the upswing of OIT.
Molly does not like the taste or texture of nuts. There is question to what will Molly's limit of nuts be because she will have to eat a certain number of nuts EVERYDAY. EVERYDAY F-O-R-E-V-E-R everyday. And since she is de-sensitizing to cashew, peanut, and walnut, that means it's just isn't one type of nuts, it's all three. As of right now, it looks like 4 of each nut *might* be our magic number. As a mom I'm not sure how I feel about this, because it will still limit what she eats. She will have protection if she accidentally has a bite of a peanut butter cookie and won't have anaphylaxis, but she won't be able to sit down with a payday bar or eat a piece of pecan pie. Maybe the later items were just my yearnings for her to have a "normal" life. I'm not sure they even really matter, because she HATES nuts- the texture, the taste, the smell so she has NO desire to eat a payday bar or pecan pie. And, at the end of the day, protection against anaphylaxis is our main goal of de-sentization/OIT. The verdict is still out on what our final nut number will be, and ultimately it will be what Molly can tolerate AND what keeps her safe.
Molly is doing well with updosing. We have had only had one set back and it was actually this week. This week we progressed to eating one whole cashew. I'm not sure if it was nerves or if she just wasn't ready yet, but the cashew caused her to vomit. So we tried a 2nd dose and again Molly immediately started vomiting. After talking to Dr. Sugerman, we decided the best course of action would be to go back a dose, back to the capsules of cashew flour and not the whole nut. Molly has taken that dose with no issue today so hopefully we are back on the upswing of OIT.
Molly does not like the taste or texture of nuts. There is question to what will Molly's limit of nuts be because she will have to eat a certain number of nuts EVERYDAY. EVERYDAY F-O-R-E-V-E-R everyday. And since she is de-sensitizing to cashew, peanut, and walnut, that means it's just isn't one type of nuts, it's all three. As of right now, it looks like 4 of each nut *might* be our magic number. As a mom I'm not sure how I feel about this, because it will still limit what she eats. She will have protection if she accidentally has a bite of a peanut butter cookie and won't have anaphylaxis, but she won't be able to sit down with a payday bar or eat a piece of pecan pie. Maybe the later items were just my yearnings for her to have a "normal" life. I'm not sure they even really matter, because she HATES nuts- the texture, the taste, the smell so she has NO desire to eat a payday bar or pecan pie. And, at the end of the day, protection against anaphylaxis is our main goal of de-sentization/OIT. The verdict is still out on what our final nut number will be, and ultimately it will be what Molly can tolerate AND what keeps her safe.
Thursday, April 3, 2014
Spring Break- Deep in the Heart of Texas
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| Matt, Sophia, Molly and Gabrielle at the River Walk in San Antonia, TX |
Molly and I flew into DFW the Thursday before spring break so she could up dose on that Friday and the Friday of spring break. She did great the first week, but the 2nd week she had hives and an eczema outbreak so the staff at Dallas Allergy and Immunology was very cautious and decided not to increase her dose. Molly had also had some changes in her pft (pulmonary funtion test) so they tweaked her asthma medications a little. They also reinforced the importance of wet wrapping (a treatment used for moderate to severe eczema, this is a good description: itchy little world: wet wrapping ) during eczema flairs on thickened skin common at the wrists, knees, elbows, and ankles.
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| Molly's increasing OIT dose |
Even though I was slightly frustrated that Molly could not increase her dose on the 2nd visit, it was a great trip and I really appreciate the cautious and concerned staff. I was worried that Molly would not be able to updose if her spring allergies and eczema issues continued. I was reassured by our wonderful physician's assistant, Joanna, that since this is the first time they have seen her broken out, they needed to be cautious and she might be able to updose next time even if she is still having an outbreak. We have a hard time with Molly's eczema and allergies in the spring. Even with daily and sometimes twice daily Zyrtec and daily Nasonex, we have to give benadryl for break through allergies.
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| Dallas Allergy and Asthma waiting area for OIT. Fun things for the kids to do while they wait. |
After our first visit for OIT, the rest of the family came down for vacation. We decided to take a trip to San Antonio. It was AMAZING! It may have been one of the best trips I've taken. The River Walk was beautiful. There was so much to do downtown and in walking distance. We went to the River Walk, the Alamo, the Buckhorn Saloon and museums. We ate out every night, going to the Rainforest Cafe and Toscana, both were concerned and accommodating with Molly's food allergies. We also ate lunch at the Buckhorn Saloon with no problems. We stayed at Hilton's Home 2 in downtown San Antonio. It was great because it has a kitchen with full refrigerator so it was easy to store Molly's OIT solutions. They had a continental breakfast, and were able to provide allergen information about the foods. Molly was able to eat several items on the breakfast bar without any problems.
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| Matt, Molly, Sophia, and Gabrielle at the Alamo. |
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| Molly and Sophia at the Buckhorn Saloon |
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| Gabrielle riding a LONGHORN at the Fort Worth Stock Yard. |
However, we were able to make an evening appointment with the sales representative.
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| Sophia posing with her doll at the American Girl Store Salon. |
Our trip to the American Girl Store was absolutely amazing. Sophi was so surprised. First, we went shopping. All three girls got new dolls and a few accessories. Then we had our birthday party at the bistro. I have to say this is the BEST restaurant I have ever been to in regards to food allergies- there are NO NUTS or PEANUTS! The food is also delicious. We each ordered an appetizer and main course. Then for dessert, they brought out a pink and white birthday cake. It was beautiful. We sang happy birthday to Sophi but had our cake boxed to go because the dolls the big girls brought with them (Ruthie and Julie) had appointments in the doll salon, which is very similar to a salon that you and I would go to.
We ended the day by going to look at several newly built houses and houses being built in Princeton, TX. AND...we bought a new house! It is close to completion and we will hopefully close by the end of April!
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| The new house in Texas :-) |
So, for now, we have returned to Indiana. There are lots of exciting and new events in our future, so make sure you subscribe to my blog so you can keep up with all of our progress :-)
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