Once I accepted my daughters allergy I began thinking about what it would be like for her to go to school. I knew she was going to need some sort of accommodations to attend a public school. Thankfully the majority of the ground work had been done for me.
So a 504 or Section 504 is a part of The Americans with Disabilities Act, basically stating that a person with a disability can not be excluded from a federally funded program, such as school. Ok so how does this apply to a child with a food allergy? A "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems.
A 504 is very inclusive and will help you spell out what steps need to be taken to make reasonable accommodations for your child. Notice I said "Reasonable". You can make any demands you want, and the school doesn't have to accept them. And in the very off chance it should go to court, the higher courts view reasonableness of the demands.
Most children with food allergies can very safely attend public school, with minimal interruption of the school program. My nieces attend a Peanut Free School, other options are allergy free tables, and the teacher or school can choose to make allergy free classrooms.
All of these things are possible as long a you communicate with the school. And I don't mean calling them the week before classes starts. Start an open line of communication before your child is even ready to be in class.
I began by looking up the school handbook, available online from most schools. I spoke with my neighbors, I called the school, and best of all I spoke with my daughters future teacher. If you can not speak with the teacher or nurse, I recommend writing them a letter and mailing it to the school. Tell them who you are, express your concerns, and be sure to leave them ways to get in contact with you.
I am a big supporter of having things in writing, so if its a 504, or an Emergency Action Plan, I recommend having something in writing. Remember 504's require prep-work and meeting with the key players, principal, nurse, teacher, teacher aids, 504 coordinator, and parents.
A great source that outlines 504 is http://foodallergyadvocate.com/?p=112
Thursday, July 31, 2014
Tuesday, July 29, 2014
Diagnosed Later In Life
I have meet two people who were diagnosed with a food allergy later in life. The first is my Mother and the second is my neighbor.
At around 40 years of age my Mother developed tingling around her lip and mouth when ever she had orange juice. It progressed to a rash and blister with brief contact, even secondhand contact. Being in the medical profession she realized that she had developed a food allergy and knew to stay away from her allergen. Some of the doctors she worked with didn't believe her until they gave her curry rice with orange zest, and she erupted with blister after one bite.
Her allergy was easily managed and avoided. She asks about fruity drinks and checks labels on her teas because orange is commonly used. She says, "I must have not been that big a fan of orange juice, because I don't even miss it."
My Mothers allergy began later in life and was very easily diagnosed as and allergy. But can you imagine spending your whole life with pain and discomfort in your stomach, because of something you ate for over 40 years, before ever knowing what it was? That was life for my neighbor Tom.
After another one of Tom's stomach episodes Susie,(his second wife) insisted that there was something wrong and took him to see a specialist. He was diagnosed with a gluten allergy and instructed on how to avoid his allergen. Susie being the amazing woman that she is, has learned to make everything gluten free. She even makes fresh bread, buns and pizza crust. She, like me, is happy that more products are becoming available on the market.
So many people think that food allergies are only happen to kids, but there don't. They are not developing in adults at the same rate as in children, but there still there. Just because you've suffered with something for the whole of your life doesn't meant it should be your norm.
If you think you have a food allergy see your doctor, ask to see a specialist if there not sure. a simple change in you diet can do wonders.
At around 40 years of age my Mother developed tingling around her lip and mouth when ever she had orange juice. It progressed to a rash and blister with brief contact, even secondhand contact. Being in the medical profession she realized that she had developed a food allergy and knew to stay away from her allergen. Some of the doctors she worked with didn't believe her until they gave her curry rice with orange zest, and she erupted with blister after one bite.
Her allergy was easily managed and avoided. She asks about fruity drinks and checks labels on her teas because orange is commonly used. She says, "I must have not been that big a fan of orange juice, because I don't even miss it."
My Mothers allergy began later in life and was very easily diagnosed as and allergy. But can you imagine spending your whole life with pain and discomfort in your stomach, because of something you ate for over 40 years, before ever knowing what it was? That was life for my neighbor Tom.
After another one of Tom's stomach episodes Susie,(his second wife) insisted that there was something wrong and took him to see a specialist. He was diagnosed with a gluten allergy and instructed on how to avoid his allergen. Susie being the amazing woman that she is, has learned to make everything gluten free. She even makes fresh bread, buns and pizza crust. She, like me, is happy that more products are becoming available on the market.
So many people think that food allergies are only happen to kids, but there don't. They are not developing in adults at the same rate as in children, but there still there. Just because you've suffered with something for the whole of your life doesn't meant it should be your norm.
If you think you have a food allergy see your doctor, ask to see a specialist if there not sure. a simple change in you diet can do wonders.
Sunday, July 27, 2014
Medical ID Bracelets
Medical ID Bracelets seem to be one of the topics that come up frequently. There are so many different types available, choosing the right one for you and your child can become very overwhelming.
Just to list of a few of the main types I came across. I found the traditional metal bracelet, the nylon webbing Velcro bracelet, and silicone bracelets. Each had their positive and negatives.
Traditional Metal Bracelets
The best thing about these bracelets is that they are easily identifiable as a medical alert bracelet. When seconds count this bracelet tells emergency medical staff that there is something of note. My biggest draw back was the price. Another draw back was that they are a fixed size. I did not want to get something my daughter would grow out of quickly or have to wait to fit into. So we decided against a traditional one for now.
Nylon Webbing Velcro Bracelets
The biggest benefit to these bracelets was that they came in a wide variety of colors and patterns. They were available with a Velcro closer or a clip and were somewhat adjustable. Great for growing kids that are going to need a little wiggle room. They were less expensive than the traditional bracelets. However, my little one like the sound of Velcro so much she would spend all day taking it off and then who knows where it would be. Not to mention if you get them wet they need to come off to dry out properly. I wore something very similar when I was in school, after a while they get a little ripe.
Silicon Bracelets
Silicone bracelets come in lots of colors, with an interchangeable ID tag or they can simply have your child's allergens printed directly on them. There are some with mix and match tabs that can list multiple allergens at once. Because of the recent popularity of silicon bracelets for awareness on so many issues, they are not always readily noticed as being for a medical alert. But they are very customizable, inexpensive, and come in a variety of sizes that include toddler. Once you have your interchangeable ID plate you can simply purchase larger bands as your child grows.
I personally chose to go with the silicon bracelet until such a time where my daughter could move to a more traditional bracelet of her choosing. Mostly because she was 18 months when I picked it out.
There are so many options I'm sure that there is one out there that is right for you and your child. And I encourage you if your child is old enough get them to participate. If they don't wear it, it can't help them, and they're more likely to wear it if they like it.
Just to list of a few of the main types I came across. I found the traditional metal bracelet, the nylon webbing Velcro bracelet, and silicone bracelets. Each had their positive and negatives.
Traditional Metal Bracelets
The best thing about these bracelets is that they are easily identifiable as a medical alert bracelet. When seconds count this bracelet tells emergency medical staff that there is something of note. My biggest draw back was the price. Another draw back was that they are a fixed size. I did not want to get something my daughter would grow out of quickly or have to wait to fit into. So we decided against a traditional one for now.
Nylon Webbing Velcro Bracelets
The biggest benefit to these bracelets was that they came in a wide variety of colors and patterns. They were available with a Velcro closer or a clip and were somewhat adjustable. Great for growing kids that are going to need a little wiggle room. They were less expensive than the traditional bracelets. However, my little one like the sound of Velcro so much she would spend all day taking it off and then who knows where it would be. Not to mention if you get them wet they need to come off to dry out properly. I wore something very similar when I was in school, after a while they get a little ripe.Silicon Bracelets
Silicone bracelets come in lots of colors, with an interchangeable ID tag or they can simply have your child's allergens printed directly on them. There are some with mix and match tabs that can list multiple allergens at once. Because of the recent popularity of silicon bracelets for awareness on so many issues, they are not always readily noticed as being for a medical alert. But they are very customizable, inexpensive, and come in a variety of sizes that include toddler. Once you have your interchangeable ID plate you can simply purchase larger bands as your child grows.
I personally chose to go with the silicon bracelet until such a time where my daughter could move to a more traditional bracelet of her choosing. Mostly because she was 18 months when I picked it out.
There are so many options I'm sure that there is one out there that is right for you and your child. And I encourage you if your child is old enough get them to participate. If they don't wear it, it can't help them, and they're more likely to wear it if they like it.
Time for a New EpiPen
After one year of carrying an Epi-Pen around it was time to get a new prescription.
We just happened to be going into the Doctor because we were sick again and I told the nurse that our Epi had expired. No problem, and she made a note. When the Doctor came in to see us she said, "Oh, I see she needs a new Epi too."
Let me just say that it is so great to have a primary that gets it and really is willing to help with our daughters overall health. She was even excited when I showed her my daughters medical ID bracelet.
Since we were sick we had to pick up our meds from the pharmacy. (Just an FYI, I made sure the pharmacy is aware of her allergy and it shows up on all of her papers.)
While picking up her medication, I asked about the Epi-Pen. She informed me that they were currently out of stock and would be requesting some with their next shipment. As a matter of fact I thinks it was the very next day that my Walgreens App went off telling me that my epi-pen was ready for pickup. When I clicked to check the price I nearly had a heart attack, it said it was over $400 dollars. I knew I had paid about $75 the year before, and I knew the insurance had made some changes, but I hadn't expected this.
I called the pharmacy immediately. Once I said who I was and started to say why I was calling, She said your calling about the price? Yes. I told her. She apologized for the confusion but they had yet to receive the order from the doctors office and the price I was seeing was the cash price. She assured me that once they received the order our insurance would be applied and the cost adjusted.
When I got off the phone I was awestruck how can anyone without insurance afford this life saving medication. And to need a new one every year, my heart really does go out to them.
To Help have Epi-Pens covered please click on the link.
We just happened to be going into the Doctor because we were sick again and I told the nurse that our Epi had expired. No problem, and she made a note. When the Doctor came in to see us she said, "Oh, I see she needs a new Epi too."
Let me just say that it is so great to have a primary that gets it and really is willing to help with our daughters overall health. She was even excited when I showed her my daughters medical ID bracelet.
Since we were sick we had to pick up our meds from the pharmacy. (Just an FYI, I made sure the pharmacy is aware of her allergy and it shows up on all of her papers.)
While picking up her medication, I asked about the Epi-Pen. She informed me that they were currently out of stock and would be requesting some with their next shipment. As a matter of fact I thinks it was the very next day that my Walgreens App went off telling me that my epi-pen was ready for pickup. When I clicked to check the price I nearly had a heart attack, it said it was over $400 dollars. I knew I had paid about $75 the year before, and I knew the insurance had made some changes, but I hadn't expected this.
I called the pharmacy immediately. Once I said who I was and started to say why I was calling, She said your calling about the price? Yes. I told her. She apologized for the confusion but they had yet to receive the order from the doctors office and the price I was seeing was the cash price. She assured me that once they received the order our insurance would be applied and the cost adjusted.
When I got off the phone I was awestruck how can anyone without insurance afford this life saving medication. And to need a new one every year, my heart really does go out to them.
To Help have Epi-Pens covered please click on the link.
Thursday, July 24, 2014
Allergy Cooking Class
In my search of Events near me, I stumbled across a cooking class being put on by one of the local Grocery stores.
The class was titled Allergy-Free Cooking, the description said:
Join Stefanie as she discusses products in the store that are allergy-free. Stefanie will also provide numerous allergy-free recipes and demonstrate how to make a few, too. If you are interested in learning more about how to cook without the top 8 most common food allergies (wheat, dairy, peanuts, tree nuts, egg, soy, fish, and shellfish). Please sign-up for this free class!
When I walked into that class there was a large display table covered with allergy-free food items, some of which I had heard of and others I had no idea existed. The demonstration area was prepped and ready to go. The observation table had a packet of recipe's and listings of allergy-free food items.
I took a seat and waited for the class to start. Stefanie arrived with freshly sliced allergy-free bread, which she passed around for everyone to try, it was delish. She then made eggless French Toast, I thought was amazing, my husband didn't like mine when I made it at home. He said the bananas made it too sweet. She also make Mac & Cheese, allergy-free, it didn't do it for me.
I was just so thrilled that there was even a class like this in our area.
French Bread
2 Tablespoons flax meal
1/3 Cup warm water
3 Cup gluten-free all-purpose flour with xanthan gum such as Domata
1 Tablespoon rapid rise yeast
2 Teaspoons salt
2 Cups warm water
3 Tablespoons olive oil
1 Tablespoon honey
Mix flax meal and water. Let stand for 10 minutes.
Combine flour, yeast and salt in a separate bowl. Add water, olive oil and honey. Stir thoroughly.
Add flax meal mixture and blend until thick. let stand for approximately 2 hours. Scoop dough out and from onto a lightly greased bread pan. Bake at 450 degrees F for 30-35 minutes. Remove from oven and let cool.
The class was titled Allergy-Free Cooking, the description said:
Join Stefanie as she discusses products in the store that are allergy-free. Stefanie will also provide numerous allergy-free recipes and demonstrate how to make a few, too. If you are interested in learning more about how to cook without the top 8 most common food allergies (wheat, dairy, peanuts, tree nuts, egg, soy, fish, and shellfish). Please sign-up for this free class!
When I walked into that class there was a large display table covered with allergy-free food items, some of which I had heard of and others I had no idea existed. The demonstration area was prepped and ready to go. The observation table had a packet of recipe's and listings of allergy-free food items.
I took a seat and waited for the class to start. Stefanie arrived with freshly sliced allergy-free bread, which she passed around for everyone to try, it was delish. She then made eggless French Toast, I thought was amazing, my husband didn't like mine when I made it at home. He said the bananas made it too sweet. She also make Mac & Cheese, allergy-free, it didn't do it for me.
I was just so thrilled that there was even a class like this in our area.
French Bread
2 Tablespoons flax meal
1/3 Cup warm water
3 Cup gluten-free all-purpose flour with xanthan gum such as Domata
1 Tablespoon rapid rise yeast
2 Teaspoons salt
2 Cups warm water
3 Tablespoons olive oil
1 Tablespoon honey
Mix flax meal and water. Let stand for 10 minutes.
Combine flour, yeast and salt in a separate bowl. Add water, olive oil and honey. Stir thoroughly.
Add flax meal mixture and blend until thick. let stand for approximately 2 hours. Scoop dough out and from onto a lightly greased bread pan. Bake at 450 degrees F for 30-35 minutes. Remove from oven and let cool.
A vacation with someone who dosen't get it.
So last month I found out that my one Aunt (the one who doesn't get it) was going to be house sitting for my other Aunt. Well in my Mothers telling me of this news she informs me she has taken the whole week off and would like me to drive in so that we can spend some time together. I told her I would think about it, but if I did come we would have to do it on the cheep, we couldn't afford to go out for every meal, which my Aunt was know to do. To this my mother agreed 100%.
When I mentioned it to my Husband he just gave me the look. You know the one where it says I know you really want to do this but I don't think you should, but your going to do it any way. Yeah, that one.
In my excitement to spend time with my Mother I began looking for things for us to do while visiting. I found out that the Shedd Aquarium was going to be having two free days while we were in, my mother agreed it was a wonderful idea. We quickly planed a lose menu for the week, and I copies a few recipes to take with. I was very optimistic it was going to be a great week.
When we arrived late Sunday afternoon, my Aunt had ordered pizza, my Mother had made a green and fruit salad, we all ate well that evening. After dinner my Mother and I took an inventory of the fridge to see what we needed to pickup and I showed her my recipes, we also removed the peanut butter from the fridge and cleaned the shelves. We made a shopping list and raided her house before hitting the grocery store.
I cooked most of the week and things were going rather well, until we had to go shopping. My daughter had received some birthday gifts that were too small and with out a gift recite I had to take them back to a Target and exchange them. My Aunt and my Mother insisted I return my things and they would start shopping with my daughter. Once the items were exchanged and I caught up with them they asked if I needed to get anything else. I told them that I needed new pj's but would have to try them on, we had been traveling so much lately I wanted a pair that weren't see-threw. So I left them and didn't see them again until we were checking out and heading home.
Once back at the house I was changing my daughter when I noticed the rash. It went from the back of her knees to the edge of her diaper, and she had been scratching. I asked if she had eaten anything. My Aunt said no, but that she had been scratching the whole time we were in the store. I told her this was her allergy rash and there was most likely something in the cart that she was sitting in. Her response was,"Oh, well she's just really sensitive." This after seen her reaction earlier in the week to a contaminated Oreo cookie.
I was in shock, my mouth was hanging there with nothing coming out. I had no response for a statement like that. When I posted the event on my Facebook group, some of the comments were down right hateful. She's my Aunt I love her, but I now know that I cannot trust her to be with my daughter, because she doesn't get it.
It's something I never expected from my own family. To have someone who just so doesn't get it. After discussing with my Husband we decided that seeing her at family functions was ok but that if it was going to be longer that a day or a short weekend, that was just going to be too much time and risk for our daughter.
When I mentioned it to my Husband he just gave me the look. You know the one where it says I know you really want to do this but I don't think you should, but your going to do it any way. Yeah, that one.
In my excitement to spend time with my Mother I began looking for things for us to do while visiting. I found out that the Shedd Aquarium was going to be having two free days while we were in, my mother agreed it was a wonderful idea. We quickly planed a lose menu for the week, and I copies a few recipes to take with. I was very optimistic it was going to be a great week.
When we arrived late Sunday afternoon, my Aunt had ordered pizza, my Mother had made a green and fruit salad, we all ate well that evening. After dinner my Mother and I took an inventory of the fridge to see what we needed to pickup and I showed her my recipes, we also removed the peanut butter from the fridge and cleaned the shelves. We made a shopping list and raided her house before hitting the grocery store.
I cooked most of the week and things were going rather well, until we had to go shopping. My daughter had received some birthday gifts that were too small and with out a gift recite I had to take them back to a Target and exchange them. My Aunt and my Mother insisted I return my things and they would start shopping with my daughter. Once the items were exchanged and I caught up with them they asked if I needed to get anything else. I told them that I needed new pj's but would have to try them on, we had been traveling so much lately I wanted a pair that weren't see-threw. So I left them and didn't see them again until we were checking out and heading home.
Once back at the house I was changing my daughter when I noticed the rash. It went from the back of her knees to the edge of her diaper, and she had been scratching. I asked if she had eaten anything. My Aunt said no, but that she had been scratching the whole time we were in the store. I told her this was her allergy rash and there was most likely something in the cart that she was sitting in. Her response was,"Oh, well she's just really sensitive." This after seen her reaction earlier in the week to a contaminated Oreo cookie.
I was in shock, my mouth was hanging there with nothing coming out. I had no response for a statement like that. When I posted the event on my Facebook group, some of the comments were down right hateful. She's my Aunt I love her, but I now know that I cannot trust her to be with my daughter, because she doesn't get it.
It's something I never expected from my own family. To have someone who just so doesn't get it. After discussing with my Husband we decided that seeing her at family functions was ok but that if it was going to be longer that a day or a short weekend, that was just going to be too much time and risk for our daughter.
Wednesday, July 23, 2014
My 5 Stages of Grief
I didn't believe it for quite some time but having a child who is diagnosed with a food allergy is just like being told that they have any other life effecting medical condition. And you are the one who needs to go through all the stages of grief in order to be present for your child.
I'm sure most of us are familiar with the 5 stages but just to clarify they are; 1.) Denial, 2.) Anger, 3.) Bargaining, 4.) Depression, and 5.) Acceptance.
My daughter was diagnosed over a year ago and I have just recently come to acceptance, so believe me it is a process.
Denial
When we were first given the diagnoses I was in shock, but I thought that I had a pretty good handle on it. She couldn't eat peanuts or peanut products, okay no biggie right. WRONG. I was at a point in the beginning of such denial and confusion that I cross contaminated my daughter several times. I never intentionally gave her peanut butter to see a reaction, but then I didn't have to.
My denial was so bad for so long that when we went to a birthday party January of this year, the mom there a nurse, asked, "Are you sure its okay to giver her M&M's, they say made in the same factory as peanuts?" I assured her it would be fine we had yet to have a cross contamination issue. Hearing that statement now just reminds me of how careless I was with my daughters health. And here was another mom with no allergy issues doing a better job of looking out for my child's inters then I was.
Anger
You better believe I was angry. Not a first it was rather something that built over time. (Just so you know I was never angry at my daughter just her allergy.) I was angry I couldn't make my traditional Christmas cookies, couldn't have peanut butter sandwiches, couldn't find a granola bar at the store that didn't involve nuts.
Bargaining
Maybe if I just have a little while she's sleeping, its not going to hurt her. Peanut M&M's are not okay but the regular ones will be fine. Maybe if there only made in the same factory it will be okay for her to eat. (By the way all of there are a NO, NO.)
Depression
The depression stage was interesting for me and thank goodness it did not last very long. It hit me one day over this past spring, it had been freezing cold and the television kept running commercials for Reese's Peanut Butter Cups, one of my favorites I might add. I turned to my husband and said she will never get to eat a Reese's Peanut Butter Cup, or cookies, or a Payday, and so many other things I listed off. He just looked at me as if I had gone mad. "Of course she can't eat those things they all have peanuts in them." I knew this on of course, but that day it washed over me like a wave. She will never get to experience these things and I cried. Not just because she couldn't have some candies, but for all those little childhood experience that would have to be altered just so for her to participate in them, for the fear and the constant vigilance that she would have to take on for the rest of her life. Knowing that this would follow her for all her days.
Acceptance
After I had my good cry I began reading, not just the handouts from the doctor, but websites, I watched online videos, listened to old webinars. And most influential of all I joined a support group on Facebook. I was learning, asking questions, and getting support, not just for the now but for the future. With my newly found education I began sharing, first with my Husband, then with family, and they with everyone. Every new person I meet and speak with I see as one more person I can teach about food allergies, and not just for my daughter's sake, but for the sake of anyone with a food allergy. It is a subject I feel needs more attention, education and understanding. I even plan to host a booth at our local fair to pass out pamphlets on allergy awareness.
I went from the mother of a food allergic child to an activist for food allergy awareness in the span of fourteen months. Here is to hoping that others have better luck reaching there acceptance stage.
I'm sure most of us are familiar with the 5 stages but just to clarify they are; 1.) Denial, 2.) Anger, 3.) Bargaining, 4.) Depression, and 5.) Acceptance.
My daughter was diagnosed over a year ago and I have just recently come to acceptance, so believe me it is a process.
Denial
When we were first given the diagnoses I was in shock, but I thought that I had a pretty good handle on it. She couldn't eat peanuts or peanut products, okay no biggie right. WRONG. I was at a point in the beginning of such denial and confusion that I cross contaminated my daughter several times. I never intentionally gave her peanut butter to see a reaction, but then I didn't have to.
My denial was so bad for so long that when we went to a birthday party January of this year, the mom there a nurse, asked, "Are you sure its okay to giver her M&M's, they say made in the same factory as peanuts?" I assured her it would be fine we had yet to have a cross contamination issue. Hearing that statement now just reminds me of how careless I was with my daughters health. And here was another mom with no allergy issues doing a better job of looking out for my child's inters then I was.
Anger
You better believe I was angry. Not a first it was rather something that built over time. (Just so you know I was never angry at my daughter just her allergy.) I was angry I couldn't make my traditional Christmas cookies, couldn't have peanut butter sandwiches, couldn't find a granola bar at the store that didn't involve nuts.
Bargaining
Maybe if I just have a little while she's sleeping, its not going to hurt her. Peanut M&M's are not okay but the regular ones will be fine. Maybe if there only made in the same factory it will be okay for her to eat. (By the way all of there are a NO, NO.)
Depression
The depression stage was interesting for me and thank goodness it did not last very long. It hit me one day over this past spring, it had been freezing cold and the television kept running commercials for Reese's Peanut Butter Cups, one of my favorites I might add. I turned to my husband and said she will never get to eat a Reese's Peanut Butter Cup, or cookies, or a Payday, and so many other things I listed off. He just looked at me as if I had gone mad. "Of course she can't eat those things they all have peanuts in them." I knew this on of course, but that day it washed over me like a wave. She will never get to experience these things and I cried. Not just because she couldn't have some candies, but for all those little childhood experience that would have to be altered just so for her to participate in them, for the fear and the constant vigilance that she would have to take on for the rest of her life. Knowing that this would follow her for all her days.
Acceptance
After I had my good cry I began reading, not just the handouts from the doctor, but websites, I watched online videos, listened to old webinars. And most influential of all I joined a support group on Facebook. I was learning, asking questions, and getting support, not just for the now but for the future. With my newly found education I began sharing, first with my Husband, then with family, and they with everyone. Every new person I meet and speak with I see as one more person I can teach about food allergies, and not just for my daughter's sake, but for the sake of anyone with a food allergy. It is a subject I feel needs more attention, education and understanding. I even plan to host a booth at our local fair to pass out pamphlets on allergy awareness.
I went from the mother of a food allergic child to an activist for food allergy awareness in the span of fourteen months. Here is to hoping that others have better luck reaching there acceptance stage.
Sunday, July 20, 2014
The Kindness of Friends :(
At the end of a wonderful camping weekend with friends and there families, it was time to pack up and go home. Some of the extra food was being divided and passed out to the individual families to take home. Mostly some toaster pastries and chunky peanut granola bars.
I took a case of what I thought was chocolate toaster pastries and loaded them into the truck. It wasn't until we got home and unpacked everything that I realized my mistake. The box my have said toaster pastries, but it was full of 12 boxes of chunky peanut granola bars. What in the world was I going to do with all of these.
Not being one to want to throw away perfectly good food I kept them as snacks for myself. You think I would have learned better. I put them up on a high shelf and had one every few days without an incident. I was starting to feel pretty proud of myself. This went on for quite sometime and there had been no problems. No cross contamination and I got to have and afternoon snack that was just for me.
Of course when you become to confident in a thing is when it all goes wrong. One afternoon after a nap I changed my daughter and sent her off to play. When it was time to change her again, I saw it. It was unmistakable. She had hives in the shape of my thumb print on her belly and was scratching it.
I just wanted to die, I had done it to her again. I gave her Benadryl and her steroid cream, and in a few hours it had cleared up.
After that we have tried to become a totally Peanut free house, it's just not worth the stress and the guilt, to know that your the one who made your child sick.
And we no longer accept food from friends, unless we absolutely know what is in it.
I took a case of what I thought was chocolate toaster pastries and loaded them into the truck. It wasn't until we got home and unpacked everything that I realized my mistake. The box my have said toaster pastries, but it was full of 12 boxes of chunky peanut granola bars. What in the world was I going to do with all of these.
Not being one to want to throw away perfectly good food I kept them as snacks for myself. You think I would have learned better. I put them up on a high shelf and had one every few days without an incident. I was starting to feel pretty proud of myself. This went on for quite sometime and there had been no problems. No cross contamination and I got to have and afternoon snack that was just for me.
Of course when you become to confident in a thing is when it all goes wrong. One afternoon after a nap I changed my daughter and sent her off to play. When it was time to change her again, I saw it. It was unmistakable. She had hives in the shape of my thumb print on her belly and was scratching it.
I just wanted to die, I had done it to her again. I gave her Benadryl and her steroid cream, and in a few hours it had cleared up.
After that we have tried to become a totally Peanut free house, it's just not worth the stress and the guilt, to know that your the one who made your child sick.
And we no longer accept food from friends, unless we absolutely know what is in it.
Saturday, July 19, 2014
My First Mess Up
Can I just say I LOVE PEANUTBUTTER!!! I love everything about it, the creamy or chunky texture. I like it melted on toast, in cookies, in candy, with or without jelly. I love peanut-butter.
Ok, now that we have established that you can see why I messed up. Sometime in our first fall after diagnosis. My Husband was helping with harvest again, and every time he went to the elevator he picked up more peanuts. Salted unshelled peanuts. At lunch time he came home and emptied his pockets into a small bowl for me. I waited until she was asleep and started in on the bowl. When the bowl was empty I threw the shells in the trash and washed the bowl, I washed my hands and rinsed my face and mouth.
When she woke up I made the mistake of kissing her. Her cheek turned red and started to get little hives. I ran into the kitchen to get her Benadryl. When I turned around she had pulled a peanut shell from the trash and was sucking on it. I totally freaked out, I took the shell from her ran her into the bathroom and washed her mouth out, and feed her the Benadryl.
I set her up with some toys, took out the trash, vacuumed the living room(where I had eaten the peanuts), and brushed my teeth and rinsed with mouth wash, I think I might have even changed my cloths.
And when it was all over I called my Husband and told him what I had done. He laughed at me, what else can you do in that situation. I told him No More Peanuts, I can't take the stress. So now when he comes home from the Farm, I make his strip at the back door and everything goes in the wash and he takes a shower.
But this was just the First.
Ok, now that we have established that you can see why I messed up. Sometime in our first fall after diagnosis. My Husband was helping with harvest again, and every time he went to the elevator he picked up more peanuts. Salted unshelled peanuts. At lunch time he came home and emptied his pockets into a small bowl for me. I waited until she was asleep and started in on the bowl. When the bowl was empty I threw the shells in the trash and washed the bowl, I washed my hands and rinsed my face and mouth.
When she woke up I made the mistake of kissing her. Her cheek turned red and started to get little hives. I ran into the kitchen to get her Benadryl. When I turned around she had pulled a peanut shell from the trash and was sucking on it. I totally freaked out, I took the shell from her ran her into the bathroom and washed her mouth out, and feed her the Benadryl.
I set her up with some toys, took out the trash, vacuumed the living room(where I had eaten the peanuts), and brushed my teeth and rinsed with mouth wash, I think I might have even changed my cloths.
And when it was all over I called my Husband and told him what I had done. He laughed at me, what else can you do in that situation. I told him No More Peanuts, I can't take the stress. So now when he comes home from the Farm, I make his strip at the back door and everything goes in the wash and he takes a shower.
But this was just the First.
Informing The Family
That very afternoon after the drive home from the Allergist, and reading all that information out loud in the car. We took to social media, which in our families means Facebook. All of our families are on and a good deal of friends.
So I posted the following message:
"We just wanted to let every
one know that our daughter is Very Allergic to Peanuts. We have been recommended to avoid all nut products because of the possible life threating nature of her allergy. She will always have an Epi-Pen with her and we would be happy to show you how one works if you are not familiar. We need your help to make sure she doesn't eat anything she shouldn't have. Thank you."
My Husband shared this message. It received no likes and 2 comments. One from my cousin who has her own food issues, and the other from a former coworker of mine.
Over the next several weeks we saw or spoke to various family members over the phone they all said that they had seen the post, but really had nothing more to say. I didn't know if they were indifferent to the whole thing or if they just didn't get it.
We were lucky to have some people that understood right off. My Mother, a nurse, totally got it. My Mother-in-law, allergic to fish, understood, but asked, "She's going to grow out of this right? Kids grow out of allergies." After we explained that if it had been anything else maybe, but not peanuts, she looked defeated but accepted.
I think the worst one was my Aunt. While talking to her over the phone one night she stated that she had seen the post. I explained how we found out and she asked, "But you breastfed her, why is she allergic? Your not allergic to peanut-butter, you've been eating it you whole life. She even asked if it was because she was an IVF baby." I wanted to slam the phone on her ear, but the effect is lost with smart phones, I can't hit the END button with the same effect.
So because of the lack of response and understanding we decided that our daughter would not be allowed to be unsupervised with anyone in the family. One of us needed to be with her at all times.
A fine plan until one of use messes up.
So I posted the following message:
"We just wanted to let every
one know that our daughter is Very Allergic to Peanuts. We have been recommended to avoid all nut products because of the possible life threating nature of her allergy. She will always have an Epi-Pen with her and we would be happy to show you how one works if you are not familiar. We need your help to make sure she doesn't eat anything she shouldn't have. Thank you."
My Husband shared this message. It received no likes and 2 comments. One from my cousin who has her own food issues, and the other from a former coworker of mine.
Over the next several weeks we saw or spoke to various family members over the phone they all said that they had seen the post, but really had nothing more to say. I didn't know if they were indifferent to the whole thing or if they just didn't get it.
We were lucky to have some people that understood right off. My Mother, a nurse, totally got it. My Mother-in-law, allergic to fish, understood, but asked, "She's going to grow out of this right? Kids grow out of allergies." After we explained that if it had been anything else maybe, but not peanuts, she looked defeated but accepted.
I think the worst one was my Aunt. While talking to her over the phone one night she stated that she had seen the post. I explained how we found out and she asked, "But you breastfed her, why is she allergic? Your not allergic to peanut-butter, you've been eating it you whole life. She even asked if it was because she was an IVF baby." I wanted to slam the phone on her ear, but the effect is lost with smart phones, I can't hit the END button with the same effect.
So because of the lack of response and understanding we decided that our daughter would not be allowed to be unsupervised with anyone in the family. One of us needed to be with her at all times.
A fine plan until one of use messes up.
Friday, July 18, 2014
The Allergist
About one week after our follow-up from the ER we were in the Allergist's office. We knew living out in the country we would have to drive over an hour away to see someone. We were sent to Allergy & Asthma of Illinois in Peoria, IL.
Once in the room we went over medical history, the questioner that we had filled out from the web site, and the allergy event itself. Our daughter was then tested for a peanut allergy, via skin scratch. Before the nurse left the room she was reacting. She set the time and stepped out to talk with the doctor. The doctor walked in and took a look at her and turned off the timer before it was half over, she had called the test, it was beyond apparent that she was highly allergic to peanuts.
We were given a Food Allergy Action Plan, and a packed of papers on how to read labels for peanuts. It was so very overwhelming I think, I just shut down for a while, or is that called denial.
Once in the room we went over medical history, the questioner that we had filled out from the web site, and the allergy event itself. Our daughter was then tested for a peanut allergy, via skin scratch. Before the nurse left the room she was reacting. She set the time and stepped out to talk with the doctor. The doctor walked in and took a look at her and turned off the timer before it was half over, she had called the test, it was beyond apparent that she was highly allergic to peanuts.
We were given a Food Allergy Action Plan, and a packed of papers on how to read labels for peanuts. It was so very overwhelming I think, I just shut down for a while, or is that called denial.
The Follow-Up
We had our Follow-Up that Monday the 13th.
The nurse had us explain the full story, as she took notes. We told our story again to the Doctor who was very concerned. She wanted us to follow-up with a pediatric allergist as soon as possible. She agreed that it could have been the peanut-butter, as I thought, but it could have also been something else.
She gave us a prescription for and epi-pen and told us to make sure we had Benadryl. We headed straight to the pharmacy and picked up her new medications.
Once home opened the epi-pens and began reading how to administer, I looked at there web page and checked with our insurance to see who we would mostly be referred to as an allergist.
The nurse had us explain the full story, as she took notes. We told our story again to the Doctor who was very concerned. She wanted us to follow-up with a pediatric allergist as soon as possible. She agreed that it could have been the peanut-butter, as I thought, but it could have also been something else.
She gave us a prescription for and epi-pen and told us to make sure we had Benadryl. We headed straight to the pharmacy and picked up her new medications.
Once home opened the epi-pens and began reading how to administer, I looked at there web page and checked with our insurance to see who we would mostly be referred to as an allergist.
The Big News!
It was Saturday May 11, 2013. Our Daughter had just turned 11 months old the week before and we had been trying all kinds of new foods.
While shopping, a store owner offered our daughter a cookie. She asked me if it was OK and I said yes. I had no real reason to think it was going to hurt her. She consumed the entire peanut-butter cookie. On the drive home she became fussy, but took her milk and fell asleep. When we arrived home my Husband took her from the car and started to change her. He called for me saying, "I think she has chickenpox!" The moment I saw her skin I knew they were hives and it could only have been the cookie. We dressed her and rushed her back into the car and started to the Hospital, which is 40 minutes away. I called the ER and explained to them what was going on, They asked if she was having trouble breathing? When I said, "No." They told me to keep any eye on her. I informed them that we lived over 40 minutes away and we were already on our way. The woman on the other end of the line finally told me to go ahead and bring her in.
When I got off the line my Husband asked me what that was all about. After I explained he said,"No Kidding we're bring her in!"
Once at the ER we were taken right in, there was no one else there. She was examined and give a liquid steroid and Benadryl to stop her scratching. The Doctor informed us that he did not want to have to give her epinephrine because of her age.
After two hours of observation we were sent home and told to follow-up with her primary care doctor.
While shopping, a store owner offered our daughter a cookie. She asked me if it was OK and I said yes. I had no real reason to think it was going to hurt her. She consumed the entire peanut-butter cookie. On the drive home she became fussy, but took her milk and fell asleep. When we arrived home my Husband took her from the car and started to change her. He called for me saying, "I think she has chickenpox!" The moment I saw her skin I knew they were hives and it could only have been the cookie. We dressed her and rushed her back into the car and started to the Hospital, which is 40 minutes away. I called the ER and explained to them what was going on, They asked if she was having trouble breathing? When I said, "No." They told me to keep any eye on her. I informed them that we lived over 40 minutes away and we were already on our way. The woman on the other end of the line finally told me to go ahead and bring her in.
When I got off the line my Husband asked me what that was all about. After I explained he said,"No Kidding we're bring her in!"
Once at the ER we were taken right in, there was no one else there. She was examined and give a liquid steroid and Benadryl to stop her scratching. The Doctor informed us that he did not want to have to give her epinephrine because of her age.
After two hours of observation we were sent home and told to follow-up with her primary care doctor.
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