This is the letter I sent our senators...
This will only take a second, you can use my letter below (just sub in your info for mine), & I'll include the important links....
This tells about what FAAN would like you to do:
http://www.foodallergy.org/Advocacy/FAAMA.html
This gives your senator:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
This tells more about the act:
http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=110_cong_bills&docid=f:s1232is.txt.pdf
December 27, 2007
The Honorable Kit Bond United States Senate Washington, DC 20510
Dear Senator Bond,
I was excited to learn that Senator Christopher Dodd asking is a sponsor of S. 1232, the Food Allergy and Anaphylaxis Management Act. I am confident Recently, you received a letter from asking you to join him as a sponsor & I am writing to ask that you would please consider co-sponsoring and supporting enactment of this bill.
I’m sure you’re aware that an estimated 2 million school-age children suffer from food allergies, for which there is no cure. Avoiding any and all products with allergy-causing ingredients is the only way to prevent potentially life-threatening reactions. Reactions often occur at school, including severe anaphylaxis, which can kill within minutes unless epinephrine is administered. Deaths from anaphylaxis are strongly associated with delays in the administration of epinephrine.
[My husband & I are both educators & have seen the growing trend of allergies among children. In the schools we’ve taught at, we’ve never seen an efficient system put into place. This is a scary feeling for both the eductor and the parent.]
The importance of managing life-threatening food allergies in the school setting has been recognized by the American Medical Association, the American Academy of Pediatrics, the National Association of School Nurses, and the American Academy of Allergy, Asthma and Immunology.
[Our 4-year old daughter suffers from a life-threatening allergy to milk. Had it not been for the fast acting epinephrine injection she received after a reaction this past summer, she might not be with us. I hate to think of when she begins school, unless some guidelines are set in place.]
Unfortunately, there are no consistent, standardized guidelines to help schools safely manage students with the disease.
S. 1232 would require the Secretary of Health and Human Services to develop and make available a voluntary policy to manage the risk of food allergy and anaphylaxis in schools. The bill would create a small program of incentive grants to assist local education agencies with adoption and implementation of food allergy management guidelines in the schools.
Passage of S. 1232 is critically important to ensure the safety of my child and the other 2 million food-allergic school-age children across the country. Please co-sponsor the bill and work for its passage.
I will be happy to talk with your staff about this important legislation and can be reached at [***-***-****].
Thank you for your consideration,
Amy Perry
Thursday, December 27, 2007
Thursday, November 15, 2007
ARTICLE: Correlation of initial food reactions to observed reactions on challenges
Three articles:
This article appeared in the June/July 2004 issue of Food Allergy News
Copyright 2004 The Food Allergy & Anaphylaxis Network
Research Update
Correlation of initial food reactions to observed reactions on challenges
Researchers investigated whether the organ system (i.e., the skin, the respiratory system, or the gastrointestinal tract) involved in an allergic reaction, or the specific food that caused it, could help to predict what future reactions would be like. They reviewed medical records of all children seen (approximately 3,000) in the Allergy Section at The Children’s Hospital of Philadelphia.
All of the children with a convincing history of food allergy and positive skin test results – a total of 1,769 patients – were offered an open challenge to confirm their food allergy. Researchers compared their initial reactions with the reactions that took place during the monitored open food challenge.
While it is more common for patients to have a similar reaction on re-exposure, researchers found that a mild reaction does not necessarily rule out a more severe reaction in later exposures.
Researchers also found that those with milk, egg, and peanut allergies were more likely than those with soy or wheat allergy to experience multiple-organ system reactions on subsequent exposure during the food challenge. Peanut also caused more multiple-organ system and anaphylactic reactions than it had previously.
Scientists also examined the patient records of individuals who underwent multiple food challenges. Researchers compared the foods that caused a reaction to the affected organ system.
They found that patients with allergy to egg were more likely to have reactions involving different organ systems the next time they were exposed to egg. Future reactions that involved more organ systems but were triggered by a food other than egg, were caused by a higher dosage of that food.
Source: Annals of Allergy, Asthma & Immunology, Vol. 92, No. 2.
This article appeared in the June/July 2004 issue of Food Allergy News
Copyright 2004 The Food Allergy & Anaphylaxis Network
Research Update
Correlation of initial food reactions to observed reactions on challenges
Researchers investigated whether the organ system (i.e., the skin, the respiratory system, or the gastrointestinal tract) involved in an allergic reaction, or the specific food that caused it, could help to predict what future reactions would be like. They reviewed medical records of all children seen (approximately 3,000) in the Allergy Section at The Children’s Hospital of Philadelphia.
All of the children with a convincing history of food allergy and positive skin test results – a total of 1,769 patients – were offered an open challenge to confirm their food allergy. Researchers compared their initial reactions with the reactions that took place during the monitored open food challenge.
While it is more common for patients to have a similar reaction on re-exposure, researchers found that a mild reaction does not necessarily rule out a more severe reaction in later exposures.
Researchers also found that those with milk, egg, and peanut allergies were more likely than those with soy or wheat allergy to experience multiple-organ system reactions on subsequent exposure during the food challenge. Peanut also caused more multiple-organ system and anaphylactic reactions than it had previously.
Scientists also examined the patient records of individuals who underwent multiple food challenges. Researchers compared the foods that caused a reaction to the affected organ system.
They found that patients with allergy to egg were more likely to have reactions involving different organ systems the next time they were exposed to egg. Future reactions that involved more organ systems but were triggered by a food other than egg, were caused by a higher dosage of that food.
Source: Annals of Allergy, Asthma & Immunology, Vol. 92, No. 2.
Tuesday, November 13, 2007
Friday, October 19, 2007
Happy Birthday to Everyone
So excited! That Aldi carries a cake mix & 'matching' icing that is safe for Flynn. It's milk free & you can even smell the soy oil in the icing. Aahh, a familiar & comforting smell for us.
Just extremely happy that I'm not having to shop at the whole foods & organic stores for everything. And a cheap brand to boot!
Let's here it for Baker's Choice -- woot!
Just extremely happy that I'm not having to shop at the whole foods & organic stores for everything. And a cheap brand to boot!
Let's here it for Baker's Choice -- woot!
Thursday, October 11, 2007
Some Non-Allergy Parents Just Don't Understand
I've been visiting a message board over at STLmoms blog.
I got drawn in & replied to a very ignorant post about peanut allergies.
A mom was "venting" because she "couldn't bring a peanut butter sandwich for my picky eater". She didn't understand why several hundred kids couldn't bring peanut butter just because of a few allergy kids. Besides she said, what would it hurt?
Of course this infuriated me. I thought, how selfish could she be? And mostly, how ignorant?!
It took me back to the days at our old church, where the Children's Director didn't want to ban milk in Flynn's class. She plainly told me, "I just can't ask that of the volunteers" when I asked her to pass a rule that the parents not bring milk into the room. I ended up volunteering on one Sunday, Jeff on another, and the on the other 2 Sundays, we had to keep her with us... bored & loud in church.
I reached the point that I couldn't understand how a church preaching about God's love was failing to show it in a very simple way. In their 2 year old class.
So we decided to look into other options....that's where we found our new church. They extended so much love to Flynn, they changed rules, passed a no-milk rule, began buying only safe snacks for her, and changed everything they could to make it safe for little Flynn to belong.
That my friends, is more like it. God's love. Jesus wasn't afraid to offend the majority, for one. Let me point out how he felt about the religious leaders...and how he overlooked their disapproval in order to heal the sick & love the rejected.
Okay, enough preaching. Back to the stlmoms board.
After the dumb mom posted her reactions & how she couldn't dream of not sending a peanut butter sandwich, a few posts followed which gently pointed out the selfishness.
Here is one. I think it is excellent:
In Nov. 2005, a mom named Lisa Turner, whose children do not have food allergies, posted the letter below on the Kids with Food Allergies (KWFA) forum. She gave permission for anyone to use it should they need it. I think it's powerful because it's written by a parent who initially was very upset that her family would have to change its life a bit to accommodate others, and then -- because she educated herself -- came around to see why it was necessary.
*******************************************
Dear Parents and Guardians:
I am writing this letter to you because your school has decided to implement a ban on peanuts, tree nuts, and/or other foods that have been associated with life-threatening allergies, and I know the initial reaction you may have regarding such a ban. I am the mother of a little girl who started school this year. About two weeks before school started I read in a local newspaper that the school she will be attending has decided to put such a ban into effect.
My first reaction was one of shock, but it quickly turned into complete ANGER! I couldn’t believe that the school would actually do something that drastic because ONE child had an allergy. Since when did the misfortunes of one dictate the rule for the majority?
I rallied support together, I wrote to the newspapers, I called television stations, and I put up posters expressing my outrage and encouraging parents who felt the same way to attend the next school board meeting and “let our voices be heard”. I even drafted up petitions to have the members of the school board removed so that a new school board could be elected, one that looked out for the needs of every child instead of just one. After all, nobody was going to tell me that I couldn’t send my picky eater to school with a peanut butter sandwich!
Then I went online to get some ammunition. What I got however, was something completely different. I got an education. I stumbled across a site for people with life-threatening allergies and the parents of children with life-threatening allergies. The first thing I found out was that, although rare, it is a lot more common than I had realized, but being angry I posted my question, "Do you really think that a ban is necessary?"
I used all my arguments. If a child is allergic to bees, do you keep all the kids in at recess? If a child is in a wheel chair, do you build a ramp or tear out the stairs? I mean after all, there are other allergies out there, and there is no way to guarantee that the school will be completely free from these foods, so where do you draw the line?
At first I wasn’t open at all to hear their reply, I was just venting, but then I really started reading what they had to say, and it was then that I started learning. You see… I put my daughter on the bus for the first time in her life. I was afraid she wouldn’t find her classroom. I was afraid she would forget to raise her hand before she spoke. I was afraid she would get on the wrong bus coming home, but what I wasn’t afraid of was that I would get a call from the school saying that my daughter wouldn’t be coming home; she is being rushed to the hospital by ambulance because of a common, everyday peanut butter sandwich.
It was then that I realized what these parents are going though. Some don’t have the luxury of worrying about little things. These parents aren’t trying to take anything away from our kids; they are trying to keep their kids safe. I looked back at my initial reaction so I could figure out what had made me so mad, and when I was completely honest with myself, I found the answer. I was mad because I was going to be inconvenienced. I was willing to put a child’s life in danger so my daughter could eat a sandwich, and what did that say about me? I mean, if I saw a dog attacking any child wouldn’t I do whatever I could to protect that child? And if that is the case, why am I so opposed to eliminating peanut butter from 5 meals out of the 21 she will have in the course of a week?
The fact of the matter is you don’t keep all the kids in at recess, but you don’t put a child with a bee sting allergy in a lunchroom full of bees either.
The fact is EVERY child is entitled to a “free and appropriate public education in a least restrictive environment”, translated that means the school has a legal responsibility to provide a safe learning environment for ALL children, and where do you draw the line? You draw the line when the unique needs of the community served by the school have been met.
It’s not easy to put your child in the hands of strangers when you know that many of them may have just eaten, or are bringing to lunch, the same thing that is poison to your child, and many of these parents would home school if they could, but just like you and I, sometimes that is not an option. The parents of children with life-threatening allergies don’t expect us all to learn this overnight, and they don’t expect us to shop for our children as if they had this allergy, and while they know that the school will never be completely free from these foods, one less sandwich, or one less snack containing these foods being brought into the schools, will be one less risk to their child’s life.
I am not saying that it hasn’t been a struggle at times, but you have to ask yourselves… Is convenience really more important than life?
In my book, that answer is no, so any small inconvenience I have is worth it.
Sincerely, Lisa Turner
I got drawn in & replied to a very ignorant post about peanut allergies.
A mom was "venting" because she "couldn't bring a peanut butter sandwich for my picky eater". She didn't understand why several hundred kids couldn't bring peanut butter just because of a few allergy kids. Besides she said, what would it hurt?
Of course this infuriated me. I thought, how selfish could she be? And mostly, how ignorant?!
It took me back to the days at our old church, where the Children's Director didn't want to ban milk in Flynn's class. She plainly told me, "I just can't ask that of the volunteers" when I asked her to pass a rule that the parents not bring milk into the room. I ended up volunteering on one Sunday, Jeff on another, and the on the other 2 Sundays, we had to keep her with us... bored & loud in church.
I reached the point that I couldn't understand how a church preaching about God's love was failing to show it in a very simple way. In their 2 year old class.
So we decided to look into other options....that's where we found our new church. They extended so much love to Flynn, they changed rules, passed a no-milk rule, began buying only safe snacks for her, and changed everything they could to make it safe for little Flynn to belong.
That my friends, is more like it. God's love. Jesus wasn't afraid to offend the majority, for one. Let me point out how he felt about the religious leaders...and how he overlooked their disapproval in order to heal the sick & love the rejected.
Okay, enough preaching. Back to the stlmoms board.
After the dumb mom posted her reactions & how she couldn't dream of not sending a peanut butter sandwich, a few posts followed which gently pointed out the selfishness.
Here is one. I think it is excellent:
In Nov. 2005, a mom named Lisa Turner, whose children do not have food allergies, posted the letter below on the Kids with Food Allergies (KWFA) forum. She gave permission for anyone to use it should they need it. I think it's powerful because it's written by a parent who initially was very upset that her family would have to change its life a bit to accommodate others, and then -- because she educated herself -- came around to see why it was necessary.
*******************************************
Dear Parents and Guardians:
I am writing this letter to you because your school has decided to implement a ban on peanuts, tree nuts, and/or other foods that have been associated with life-threatening allergies, and I know the initial reaction you may have regarding such a ban. I am the mother of a little girl who started school this year. About two weeks before school started I read in a local newspaper that the school she will be attending has decided to put such a ban into effect.
My first reaction was one of shock, but it quickly turned into complete ANGER! I couldn’t believe that the school would actually do something that drastic because ONE child had an allergy. Since when did the misfortunes of one dictate the rule for the majority?
I rallied support together, I wrote to the newspapers, I called television stations, and I put up posters expressing my outrage and encouraging parents who felt the same way to attend the next school board meeting and “let our voices be heard”. I even drafted up petitions to have the members of the school board removed so that a new school board could be elected, one that looked out for the needs of every child instead of just one. After all, nobody was going to tell me that I couldn’t send my picky eater to school with a peanut butter sandwich!
Then I went online to get some ammunition. What I got however, was something completely different. I got an education. I stumbled across a site for people with life-threatening allergies and the parents of children with life-threatening allergies. The first thing I found out was that, although rare, it is a lot more common than I had realized, but being angry I posted my question, "Do you really think that a ban is necessary?"
I used all my arguments. If a child is allergic to bees, do you keep all the kids in at recess? If a child is in a wheel chair, do you build a ramp or tear out the stairs? I mean after all, there are other allergies out there, and there is no way to guarantee that the school will be completely free from these foods, so where do you draw the line?
At first I wasn’t open at all to hear their reply, I was just venting, but then I really started reading what they had to say, and it was then that I started learning. You see… I put my daughter on the bus for the first time in her life. I was afraid she wouldn’t find her classroom. I was afraid she would forget to raise her hand before she spoke. I was afraid she would get on the wrong bus coming home, but what I wasn’t afraid of was that I would get a call from the school saying that my daughter wouldn’t be coming home; she is being rushed to the hospital by ambulance because of a common, everyday peanut butter sandwich.
It was then that I realized what these parents are going though. Some don’t have the luxury of worrying about little things. These parents aren’t trying to take anything away from our kids; they are trying to keep their kids safe. I looked back at my initial reaction so I could figure out what had made me so mad, and when I was completely honest with myself, I found the answer. I was mad because I was going to be inconvenienced. I was willing to put a child’s life in danger so my daughter could eat a sandwich, and what did that say about me? I mean, if I saw a dog attacking any child wouldn’t I do whatever I could to protect that child? And if that is the case, why am I so opposed to eliminating peanut butter from 5 meals out of the 21 she will have in the course of a week?
The fact of the matter is you don’t keep all the kids in at recess, but you don’t put a child with a bee sting allergy in a lunchroom full of bees either.
The fact is EVERY child is entitled to a “free and appropriate public education in a least restrictive environment”, translated that means the school has a legal responsibility to provide a safe learning environment for ALL children, and where do you draw the line? You draw the line when the unique needs of the community served by the school have been met.
It’s not easy to put your child in the hands of strangers when you know that many of them may have just eaten, or are bringing to lunch, the same thing that is poison to your child, and many of these parents would home school if they could, but just like you and I, sometimes that is not an option. The parents of children with life-threatening allergies don’t expect us all to learn this overnight, and they don’t expect us to shop for our children as if they had this allergy, and while they know that the school will never be completely free from these foods, one less sandwich, or one less snack containing these foods being brought into the schools, will be one less risk to their child’s life.
I am not saying that it hasn’t been a struggle at times, but you have to ask yourselves… Is convenience really more important than life?
In my book, that answer is no, so any small inconvenience I have is worth it.
Sincerely, Lisa Turner
Tuesday, October 2, 2007
How a Child Might Describe a Reaction
Children have unique ways of describing their experiences and perceptions, including
allergic reactions. Precious time is lost when adults do not immediately recognize that a
reaction is occurring or don’t understand what the children might be telling them.
The following text contains examples of the words a child might use to describe a
reaction.
In addition, know that sometimes children, especially very young ones, will put their
hands in their mouths, or pull or scratch at their tongues, in response to a reaction. Also,
children’s voices may change (i.e., become hoarse or squeaky), and they may slur their
words.
If you suspect your child is having an allergic reaction, follow your doctor’s instructions.
• This food’s too spicy.
• My tongue is hot (or burning).
• It feels like something’s poking my tongue.
• My tongue (or mouth) is tingling (or burning).
• My tongue (or mouth) itches.
• It (my tongue) feels like there is hair on it.
• My mouth feels funny.
• There’s a frog in my throat.
• There’s something stuck in my throat.
• My tongue feels full (or heavy).
• My lips feel tight.
• It feels like there are bugs in there (to describe itchy ears).
• It [my throat] feels thick.
• It feels like a bump is on the back of my tongue [throat].
Food Allergy News, Vol. 13, No. 2. ©2003 The Food Allergy &
Anaphylaxis Network. All rights reserved.
allergic reactions. Precious time is lost when adults do not immediately recognize that a
reaction is occurring or don’t understand what the children might be telling them.
The following text contains examples of the words a child might use to describe a
reaction.
In addition, know that sometimes children, especially very young ones, will put their
hands in their mouths, or pull or scratch at their tongues, in response to a reaction. Also,
children’s voices may change (i.e., become hoarse or squeaky), and they may slur their
words.
If you suspect your child is having an allergic reaction, follow your doctor’s instructions.
• This food’s too spicy.
• My tongue is hot (or burning).
• It feels like something’s poking my tongue.
• My tongue (or mouth) is tingling (or burning).
• My tongue (or mouth) itches.
• It (my tongue) feels like there is hair on it.
• My mouth feels funny.
• There’s a frog in my throat.
• There’s something stuck in my throat.
• My tongue feels full (or heavy).
• My lips feel tight.
• It feels like there are bugs in there (to describe itchy ears).
• It [my throat] feels thick.
• It feels like a bump is on the back of my tongue [throat].
Food Allergy News, Vol. 13, No. 2. ©2003 The Food Allergy &
Anaphylaxis Network. All rights reserved.
Tuesday, September 11, 2007
When The Moon Hits Your Eye
Like a big dairy-free pizza pie...
That's amore!
Flynn's Dairy-Free Pizza Pie:
Pillsbury pizza crust
contadina tomato sauce
soy cheese (sliced, cut into squares)
California pitted black olives
Hormel pepperoni slices
Using 2 8" cake pans, Flynn spreads the crust out into the bottom of the greased pan
She then pours & smooths out the tomato sauce
she takes the squares of cheese that mommy cut & spreads them evenly
she then does the same with the cut olives *cut by mommy
she takes the whole package of pepperoni & distributes it as well.
Repeat in 2nd pan.
Mommy puts it in the hot oven (350 degrees)
Mommy gets it out about 10 mis later
Yummy!!
That's amore!(and a dirty oven)
While the pizza pies baked,
Flynn & Gabe made a pizza that can not be eaten (well, Gabe might beg to differ)
Flynn's Dairy-Free Pizza Pie:
Pillsbury pizza crust
contadina tomato sauce
soy cheese (sliced, cut into squares)
California pitted black olives
Hormel pepperoni slices
Using 2 8" cake pans, Flynn spreads the crust out into the bottom of the greased pan
She then pours & smooths out the tomato sauce
she takes the squares of cheese that mommy cut & spreads them evenly
she then does the same with the cut olives *cut by mommy
she takes the whole package of pepperoni & distributes it as well.
Repeat in 2nd pan.
Mommy puts it in the hot oven (350 degrees)
Mommy gets it out about 10 mis later
Yummy!!
Friday, August 24, 2007
Experiences with Restaurants
Hopefully soon, I will be posting some experiences, both good & bad, that we've recently had with restaurants.
I think it says a lot about a company's customer service, when they deal with a situation like ours.
I will first talk about eating at Bob Evans last night & the great experience we had there.
I think it says a lot about a company's customer service, when they deal with a situation like ours.
I will first talk about eating at Bob Evans last night & the great experience we had there.
Monday, June 11, 2007
It's Official... I'm Human
It's not easy to be the parent of an allergy kid.
NO ONE knows, until they experience it first-hand.
And before I share my screw up, I feel the need to defend my own honor by sharing just how careful I really am....
When eating dinner, I typically eat w/ my right hand, to reserve my left hand (clean) to deal w/ Flynn, her food, her cup, etc.
I label her cup & Gabe's w/ a "G" or an "F", for when Papa, Nana, Grammy, Aunt G, or Hannah babysits.
I read labels once, twice or several times.
I forgo some parties or situations where I feel she might not be kept safe.
I put my career on hold, as working full time would force us to put the kids (Flynn) in a group setting where she might not be kept safe.
I'm her advocate in certain situations like church... for example, we quit the last church we attended because they wouldn't make her classroom a milk-free zone, as the children's director, "[couldn't] ask that of [her] volunteers".
I read everything I can get my eyes on.
We try our hardest to educate Flynn on her allergy, but try just as hard to make her feel like she's "normal" & doesn't miss out on too much.
I'm a clean freak when dealing w/ milk. If I'm giving Gabe his milk cup/refilling it, I wipe the counter off after his lid touches it.
I hover over her in group situations.
And everyone who is around my Flynn-parenting, can attest that we are careful, to a fault. It's almost neurotic how we behave around her.
So, can you imagine that last night, I made the first & worst mistake I've ever made with her....
We went to Delaney's birthday party at Woody's Cafe (a chuck e cheese type of place)... so I had planned to not only bring her her own dinner (plain hamburger happy meal), but I wanted to be sure to bring a special dessert/snack for her to eat while everyone else ate cake.
P.S. I'm on steroids for an allergic skin reaction (to what I'm not sure), and am on a high dose of prednazone, to which I'm blaming any not-myself-ness....
The other day I had the kids (way too close to naptime) at Dierbergs trying to do a quick shopping trip. Gabe was throwing a fit, he was tired & hungry & bored. He was trying to cliff dive from the shopping cart. People were staring, Flynn was laughing & I was sweating.
On the end cap, I spotted the cutest animal crackers. They were iced & sprinkled & were calling for me to buy them, as the funnest b'day cake alternative.
Remember how I mentioned my meticulous behavior when it comes to label reading?...So I picked them up, at the very bottom was the allergy warning (a practice that the FDA tried to pass by Dec '05) which informed me that the only allergies were peanuts.
I've NEVER by the way, just took their word for it, I've always read each & every ingredient myself to see if any of the 40-something milk-based ingredients are in the food.
But I didn't. I don't know why. Maybe the roids. Maybe Gabe's ability to rush me. I don't know.... Maybe I figured I'd read closely at home?
I didn't.
I grabbed them last nite & I put them in a container for her to eat at the party.
And she did.
Then she ran off into the ball pit & started playing.
About 10 minutes later, she ran up to me & was crying, and sneezing & clawing at her throat & skin.She was clearly having a reaction....but to what? I had no idea. I sat her in a chair, grabbed her bag, and started medicating her....benadry, albuterol...Then, as God sent him, up walked a doctor, a friend of the Frosts & he quick got involved.
Not long after, she started to drool & show signs of airway closure.
I knew it in the back of my mind, but Lee pointed out the obvious....the EPI PEN.
I hate the epi pen....altho there are several situatons where she probably SHOULD have had it, I didn't....cuz I'm scared. It's A TON of adrenaline, a shot of a chemical that will open your vessels, your airway, you name it.
That's when I lost it.... you know that I'm typically a calm & collected person when it comes to her health, but I knew this was the worst she has been.
He gave her the shot....and we jumped in the car....
**************************************
We passed a cop who I yelled out my window to for a police escort.... Dr Lee from behind me yelled out that he was a physician & that Flynn was having an allergic reaction.....but apparently it was donut break in a matter of minutes (sorry to my friends & family whom are policemen & take offense to that), as he declined.Fine. I turned on the flashers & floored it, pealing away from the cop so he could get back to pasting the big orange sticker on the stalled car (apparently far more important than saving a life).
We blew through red lights & stop signs & in probably 2 mins, I skidded into the ER entrance.
Dr Lee grabbed Flynn & her bag, I grabbed Gabe, and off we ran.
Thanking God a millionth time for Lee, who ran in w/ Flynn, again announced his profession, & what was going on. They ran us back to a room, where in a matter of milliseconds, there were 3 or 4 people in the room.
It was bizarre.
It was surreal.
It was my little girl coming close to death.
**********************************************
I write through tears as I reminsce the way I felt. Jeff was at home 30 minutes away & I was so scared. I realize at times like that just how much I rely on him...and thank God that I'm fortunate enough to have a husband who is an equal partner in parenting.
**********************************************
They gave Flynn another shot of epinephrine, more antihistamine, and started her on oxygen & albuterol, and something else that I'm forgetting. They put leads on her chest, to monitor her heart (that epinephrine is some crazy stuff), and she had a "glow toe" (blood ox pulse thing on her toe).
Her swelling started going down. But we spent the rest of the night under close observation with regular intervals of meds.
Can I tell you what a stud this girl is? Other than crying from the epi pen (which I would do too), she didn't cry. She never showed fear. She is amazing.When I was holding her cheek to mine while she got the epi pen, we talked again about the lesson that meant so much to her a few weeks ago.... the book of Joshua: God is with us always. He never leaves us. I'll tell you that I needed it as much as she did. Maybe more.
I wish I could be more like her. She never doubts it. She's quick to remind me that God made "the earth, the planet we live on" & that Jesus lives in our hearts. When she looked at me through her swollen eyes last night, she reminded me that it was okay.
This morning, while we drove to my parents to get Gabe, she called up to Jeff, "I wanna be a teacher when I get big, just like you." Even though her professions of choice are fleeting, it didn't keep Jeff & I from getting teary-eyed.
And I think she could be a doctor.
But God's definitely got something special planned for her.
NO ONE knows, until they experience it first-hand.
And before I share my screw up, I feel the need to defend my own honor by sharing just how careful I really am....
When eating dinner, I typically eat w/ my right hand, to reserve my left hand (clean) to deal w/ Flynn, her food, her cup, etc.
I label her cup & Gabe's w/ a "G" or an "F", for when Papa, Nana, Grammy, Aunt G, or Hannah babysits.
I read labels once, twice or several times.
I forgo some parties or situations where I feel she might not be kept safe.
I put my career on hold, as working full time would force us to put the kids (Flynn) in a group setting where she might not be kept safe.
I'm her advocate in certain situations like church... for example, we quit the last church we attended because they wouldn't make her classroom a milk-free zone, as the children's director, "[couldn't] ask that of [her] volunteers".
I read everything I can get my eyes on.
We try our hardest to educate Flynn on her allergy, but try just as hard to make her feel like she's "normal" & doesn't miss out on too much.
I'm a clean freak when dealing w/ milk. If I'm giving Gabe his milk cup/refilling it, I wipe the counter off after his lid touches it.
I hover over her in group situations.
And everyone who is around my Flynn-parenting, can attest that we are careful, to a fault. It's almost neurotic how we behave around her.
So, can you imagine that last night, I made the first & worst mistake I've ever made with her....
We went to Delaney's birthday party at Woody's Cafe (a chuck e cheese type of place)... so I had planned to not only bring her her own dinner (plain hamburger happy meal), but I wanted to be sure to bring a special dessert/snack for her to eat while everyone else ate cake.
P.S. I'm on steroids for an allergic skin reaction (to what I'm not sure), and am on a high dose of prednazone, to which I'm blaming any not-myself-ness....
The other day I had the kids (way too close to naptime) at Dierbergs trying to do a quick shopping trip. Gabe was throwing a fit, he was tired & hungry & bored. He was trying to cliff dive from the shopping cart. People were staring, Flynn was laughing & I was sweating.
On the end cap, I spotted the cutest animal crackers. They were iced & sprinkled & were calling for me to buy them, as the funnest b'day cake alternative.
Remember how I mentioned my meticulous behavior when it comes to label reading?...So I picked them up, at the very bottom was the allergy warning (a practice that the FDA tried to pass by Dec '05) which informed me that the only allergies were peanuts.
I've NEVER by the way, just took their word for it, I've always read each & every ingredient myself to see if any of the 40-something milk-based ingredients are in the food.
But I didn't. I don't know why. Maybe the roids. Maybe Gabe's ability to rush me. I don't know.... Maybe I figured I'd read closely at home?
I didn't.
I grabbed them last nite & I put them in a container for her to eat at the party.
And she did.
Then she ran off into the ball pit & started playing.
About 10 minutes later, she ran up to me & was crying, and sneezing & clawing at her throat & skin.She was clearly having a reaction....but to what? I had no idea. I sat her in a chair, grabbed her bag, and started medicating her....benadry, albuterol...Then, as God sent him, up walked a doctor, a friend of the Frosts & he quick got involved.
Not long after, she started to drool & show signs of airway closure.
I knew it in the back of my mind, but Lee pointed out the obvious....the EPI PEN.
I hate the epi pen....altho there are several situatons where she probably SHOULD have had it, I didn't....cuz I'm scared. It's A TON of adrenaline, a shot of a chemical that will open your vessels, your airway, you name it.
That's when I lost it.... you know that I'm typically a calm & collected person when it comes to her health, but I knew this was the worst she has been.
He gave her the shot....and we jumped in the car....
**************************************
We passed a cop who I yelled out my window to for a police escort.... Dr Lee from behind me yelled out that he was a physician & that Flynn was having an allergic reaction.....but apparently it was donut break in a matter of minutes (sorry to my friends & family whom are policemen & take offense to that), as he declined.Fine. I turned on the flashers & floored it, pealing away from the cop so he could get back to pasting the big orange sticker on the stalled car (apparently far more important than saving a life).
We blew through red lights & stop signs & in probably 2 mins, I skidded into the ER entrance.
Dr Lee grabbed Flynn & her bag, I grabbed Gabe, and off we ran.
Thanking God a millionth time for Lee, who ran in w/ Flynn, again announced his profession, & what was going on. They ran us back to a room, where in a matter of milliseconds, there were 3 or 4 people in the room.
It was bizarre.
It was surreal.
It was my little girl coming close to death.
**********************************************
I write through tears as I reminsce the way I felt. Jeff was at home 30 minutes away & I was so scared. I realize at times like that just how much I rely on him...and thank God that I'm fortunate enough to have a husband who is an equal partner in parenting.
**********************************************
They gave Flynn another shot of epinephrine, more antihistamine, and started her on oxygen & albuterol, and something else that I'm forgetting. They put leads on her chest, to monitor her heart (that epinephrine is some crazy stuff), and she had a "glow toe" (blood ox pulse thing on her toe).
Her swelling started going down. But we spent the rest of the night under close observation with regular intervals of meds.
Can I tell you what a stud this girl is? Other than crying from the epi pen (which I would do too), she didn't cry. She never showed fear. She is amazing.When I was holding her cheek to mine while she got the epi pen, we talked again about the lesson that meant so much to her a few weeks ago.... the book of Joshua: God is with us always. He never leaves us. I'll tell you that I needed it as much as she did. Maybe more.
I wish I could be more like her. She never doubts it. She's quick to remind me that God made "the earth, the planet we live on" & that Jesus lives in our hearts. When she looked at me through her swollen eyes last night, she reminded me that it was okay.
This morning, while we drove to my parents to get Gabe, she called up to Jeff, "I wanna be a teacher when I get big, just like you." Even though her professions of choice are fleeting, it didn't keep Jeff & I from getting teary-eyed.
And I think she could be a doctor.
But God's definitely got something special planned for her.
Monday, May 21, 2007
13 FACTS ABOUT FOOD ALLERGIES
13 Facts about Food Allergies:
1. Scientists are reporting an increase in food allergies over the past decade. In particular, peanut allergies among young children doubled between 1997 and 2002.
2. Approximately 12 million Americans suffer from food allergies, with 6.9 million allergic to seafood and 3.3 million allergic to peanuts or tree nuts.
3. Food allergy is the leading cause of anaphylaxis (a severe allergic reaction) outside the hospital setting.
4. Eight foods account for 90% of all reactions in the U.S.: milk, eggs, peanuts, tree nuts (walnuts, almonds, cashews, pistachios, pecans, etc.), wheat, soy, fish, and shellfish.
5. There is no cure for food allergy. Strict avoidance of the allergy-causing food is the only way to prevent a reaction.
6. Food allergic reactions result in over 30,000 emergency room visits each year.
7. It is estimated that between 150 and 200 people die annually from anaphylaxis to food; including children and young adults.
8. Approximately 2.2 million school-aged children have food allergy.
9. One in every 17 children under the age of 3 has food allergy.
10. Milk allergy is one of the most common in young infants, with 2-3% of children under three years of age allergic to cow's milk proteins.
11. Trace amounts of a food allergen can cause a reaction. Patients should be on guard for hidden ingredients (such as milk or peanuts) in unsuspected places such as candy, baked goods, trail mixes, sauces, desserts, and gravies, just to name a few.
12. Medications can even contain dairy (Prevacid Solutabs is one example).
13. Virtually all infants who develop cow's milk allergy do so in the first year of life, with about 80% ‘outgrowing' their milk allergy by their fifth birthday. Nearly 25% of these milk-allergic infants retain their sensitivity into the second decade of life, and 35% go on to develop other food allergies.
1. Scientists are reporting an increase in food allergies over the past decade. In particular, peanut allergies among young children doubled between 1997 and 2002.
2. Approximately 12 million Americans suffer from food allergies, with 6.9 million allergic to seafood and 3.3 million allergic to peanuts or tree nuts.
3. Food allergy is the leading cause of anaphylaxis (a severe allergic reaction) outside the hospital setting.
4. Eight foods account for 90% of all reactions in the U.S.: milk, eggs, peanuts, tree nuts (walnuts, almonds, cashews, pistachios, pecans, etc.), wheat, soy, fish, and shellfish.
5. There is no cure for food allergy. Strict avoidance of the allergy-causing food is the only way to prevent a reaction.
6. Food allergic reactions result in over 30,000 emergency room visits each year.
7. It is estimated that between 150 and 200 people die annually from anaphylaxis to food; including children and young adults.
8. Approximately 2.2 million school-aged children have food allergy.
9. One in every 17 children under the age of 3 has food allergy.
10. Milk allergy is one of the most common in young infants, with 2-3% of children under three years of age allergic to cow's milk proteins.
11. Trace amounts of a food allergen can cause a reaction. Patients should be on guard for hidden ingredients (such as milk or peanuts) in unsuspected places such as candy, baked goods, trail mixes, sauces, desserts, and gravies, just to name a few.
12. Medications can even contain dairy (Prevacid Solutabs is one example).
13. Virtually all infants who develop cow's milk allergy do so in the first year of life, with about 80% ‘outgrowing' their milk allergy by their fifth birthday. Nearly 25% of these milk-allergic infants retain their sensitivity into the second decade of life, and 35% go on to develop other food allergies.
Thursday, April 19, 2007
Getting More Recognized
I guess a huge part of me is mucho relieved that allergies are getting some exposure.
Another huge part of me worries even moreso, about Flynn attending public school.
And a huge part of that last part, will pray harder than I ever have... that she'll outgrow this ugly thing.
Tuesday, January 30, 2007
Milk Allergy Summary
I had a few moms ask for info re milk allergy...how we discovered it...what we do now. And here's what I compiled based on our experience. I send this to anyone who wants just a little info...
Milk Allergy Info
An allergy to a cow’s milk protein is much more serious than most people imagine. It is NOT lactose intolerance!! (I get people saying that all the time). It is when a person has an allergic reaction (be it rash, vomiting, anaphylaxis, etc.) to ingesting (or in Flynn’s case just coming in contact with) a substance (food or drink) which contains a cow’s milk protein. A severe allergic reaction could end up as serious as an anaphylactic reaction (her stopping breathing or even worse).
I’ve read that 50% of babies outgrow the milk allergy by two. Flynn was tested most recently at 27 mos & on a scale of 1-4, had a 4+. She is supposed to be tested every 6 mos, but because they have such a hard time putting a line in her vein (they ended up cutting her finger & squeezing the blood out), we’re opting to test her yearly instead. We PRAY she’ll outgrow this.
Ours has been a learning experience. We didn’t personally know anyone w/ a milk allergy, so it wasn’t even something in the back of our mind. At 6 mos, for the first time she was given formula (combined with breast milk) & had a horrid reaction. Again, totally unaware of what it could be, we UNDER-reacted (later learned she should’ve been given an EPI-pen & taken to the ER). I wasn’t w/ her, but she sneezed, swelled, wheezed, & eventually vomited. This happened 2x more before we made a connection. Our HORRIBLE pediatrician (we’ve since switched back to our original one), said that it wasn’t indicative of an allergy & try lactose free (WRONG!). He also didn’t recommend an allergist (wrong again!). I figured out the allergy – even in foods, when she ate Gerber graduates meat sticks. They contain whey & after eating just one, her face was filled w/ welts.
It’s still so bad that last year, Jeff ate an ice cream sandwich & failed to wash his hands afterward. He picked her up from the bath & everywhere his hands touched her, left red spots with white bumps.
The most frustrating thing is trying to find a variety of foods that are safe. I didn’t wean her from the breast until 14 mos (I couldn't continue to nurse as I was entering the 2nd trimester of pregnancy). When I wasn’t w/ her, she got NUTRAMIGEN (a very broken down formula & expensive!!) Now she drinks SILK. It’s the mildest tasting soy milk (in my opinion) & I can cook w/ it (as a sub for reg. milk) & Jeff / I don’t notice.
A very helpful source when it comes to this, is the vegan website (never thought I’d say my 1-yr old was a vegan!!)
http://www.peta.org/accidentallyVegan/
This list, combined w/ some other foods that I know are safe, is the list I carry w/ me (particularly when grocery shopping).
An allergy to a cow’s milk protein is much more serious than most people imagine. It is NOT lactose intolerance!! (I get people saying that all the time). It is when a person has an allergic reaction (be it rash, vomiting, anaphylaxis, etc.) to ingesting (or in Flynn’s case just coming in contact with) a substance (food or drink) which contains a cow’s milk protein. A severe allergic reaction could end up as serious as an anaphylactic reaction (her stopping breathing or even worse).
I’ve read that 50% of babies outgrow the milk allergy by two. Flynn was tested most recently at 27 mos & on a scale of 1-4, had a 4+. She is supposed to be tested every 6 mos, but because they have such a hard time putting a line in her vein (they ended up cutting her finger & squeezing the blood out), we’re opting to test her yearly instead. We PRAY she’ll outgrow this.
Ours has been a learning experience. We didn’t personally know anyone w/ a milk allergy, so it wasn’t even something in the back of our mind. At 6 mos, for the first time she was given formula (combined with breast milk) & had a horrid reaction. Again, totally unaware of what it could be, we UNDER-reacted (later learned she should’ve been given an EPI-pen & taken to the ER). I wasn’t w/ her, but she sneezed, swelled, wheezed, & eventually vomited. This happened 2x more before we made a connection. Our HORRIBLE pediatrician (we’ve since switched back to our original one), said that it wasn’t indicative of an allergy & try lactose free (WRONG!). He also didn’t recommend an allergist (wrong again!). I figured out the allergy – even in foods, when she ate Gerber graduates meat sticks. They contain whey & after eating just one, her face was filled w/ welts.
It’s still so bad that last year, Jeff ate an ice cream sandwich & failed to wash his hands afterward. He picked her up from the bath & everywhere his hands touched her, left red spots with white bumps.
The most frustrating thing is trying to find a variety of foods that are safe. I didn’t wean her from the breast until 14 mos (I couldn't continue to nurse as I was entering the 2nd trimester of pregnancy). When I wasn’t w/ her, she got NUTRAMIGEN (a very broken down formula & expensive!!) Now she drinks SILK. It’s the mildest tasting soy milk (in my opinion) & I can cook w/ it (as a sub for reg. milk) & Jeff / I don’t notice.
A very helpful source when it comes to this, is the vegan website (never thought I’d say my 1-yr old was a vegan!!)
http://www.peta.org/accidentallyVegan/
This list, combined w/ some other foods that I know are safe, is the list I carry w/ me (particularly when grocery shopping).
I love our pediatrician, she's awesome, however sometimes I feel like I know more about this situation than her. I'm sure this is untrue, but when she asked if we wanted to do a milk challenge (giving a sample of milk in a controlled environment), I remembered that she doesn't realize how serious this is for Flynn.
You are your child's advocate & basically no one can be trusted, including ME! Thankful only to God, I have never screwed up. But I am the only one. You can't cross-contaminate, use the same utensils or allowher to touch ANYTHING milk-related. You must wash your face & hands anytime you've eaten dairy, or else not touch or kiss her! This is easy for the family to forget.
Beware of employees at healthfood stores, who appear to be knowledgeable on the subject. When Flynn was 2, we gave her rice cheese from THE NATURAL WAY. The employee there, advised Jeff to purchase this & give it to Flynn. It contained a milk ingredient & after a TINY corner of the sliced cheese, Flynn began to drool & wheeze. When I contacted them later, they simply sent a letter of apology (they didn’t even refund our $5 spend on the cheese!!).
What we finally ended up doing was always carrying a can of CAMPBELL’S CHUNKY chicken noodle soup in her diaper bag. That way, wherever we end up (friends or family), we know we have a safe meal for her to eat. We also rely heavily on McD’s plain hamburgers. Their fries are safe for her as well.
Beware of employees at healthfood stores, who appear to be knowledgeable on the subject. When Flynn was 2, we gave her rice cheese from THE NATURAL WAY. The employee there, advised Jeff to purchase this & give it to Flynn. It contained a milk ingredient & after a TINY corner of the sliced cheese, Flynn began to drool & wheeze. When I contacted them later, they simply sent a letter of apology (they didn’t even refund our $5 spend on the cheese!!).
What we finally ended up doing was always carrying a can of CAMPBELL’S CHUNKY chicken noodle soup in her diaper bag. That way, wherever we end up (friends or family), we know we have a safe meal for her to eat. We also rely heavily on McD’s plain hamburgers. Their fries are safe for her as well.
I'm happy to answer any questions based on our experience. I would've loved a resource like this while I was going through the initiation of this. Good Luck!
Helpful Websites:
http://kidshealth.org/parent/misc/milkallergy_cutout.html (this page is great to print out & pass out to the people who might be caring for your milk allergy child)
http://kidshealth.org/parent/nutrition_fit/nutrition/milk_allergy_diet.html
http://www.wegmans.com/health/nutrition/MilkAllergy.asp (this kinda explains the kosher symbol & how that helps us)
http://www.med.umich.edu/1libr/pa/pa_milkall_hhg.htm (after looking @ this particular page, a little helpful hint, we ask the deli counter if they’ll hand slice us some meat for Flynn – they’re usually understanding)
http://www.allergicchild.com/default.htm (a page by parents of 2 allergic kids)
http://messageboards.ivillage.com/iv-ppallergies (a message board I found helpful)
*Amy’s disclaimer: I am in no way a medical professional nor have I had formal training on this matter. Please consult your child’s pediatrician before trying any of my ideas.
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