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First time using the Epi-Pen and the Anxiety that has followed

Posted on January 18th, 2015 by Alison | Posted in Babies & Kids, Emotions, Food Allergies, Peanuts/Nuts Allergy | Read 9 Comments - Add Your Own »

epi pen injectionI finally used the Epi-Pen on my daughter after eight years of managing her food allergies. I used it because I had to. I used it because she asked me to.

We were in Mexico, at a place we visit every year. My daughter is extremely responsible about her food allergies, and carries her “kit” (containing two Epi-Pens, Benadryl and asthma inhaler) with her everywhere she goes, even to the pool. I also had an extra Epi-Pen with me on the trip, so we had three in our possession. The story of BJ Hom is always in the back of my mind when we travel to Mexico — it was there that this young man had an anaphylactic reaction to peanuts but the family did not have an Epi-Pen with them (he had only suffered from hives in the past so they didn’t think it could get more serious than that). We are prepared for an accident in case our vigilance about reading labels, asking questions, and avoiding uncertain foods fails.

On that afternoon at the pool, she selected a popsicle out of a popsicle cart. It had ingredients on the label, both in English and in Spanish. It was a coconut popsicle, containing coconut, cream, milk, sugar, and some additives. Nothing she hadn’t eaten before. Within minutes she came to me and told me that she didn’t feel right. As she was telling me, a large hive appeared on the skin in the lower corner of her mouth. I knew this wasn’t good. Her face had lost its color and dull, dark streaks appeared under her eyes. She said her throat felt “bumpy.” We pulled the Benadryl out of her kit and she took one, and then another. Hives popped out on her stomach, and then on her back.

That day, by our good fortune, my father was hanging out at the kid pool with us. He is a retired pediatrician and I was so glad he was right there at that moment. I showed him the hives. He suggested we head back to the room where he had prednisone in his medicine bag. Prednisone is a corticosteroid that can help reduce swelling caused by allergic reactions, but it is not an immediate treatment since it comes in pill form and takes a little while to have an effect. When we arrived at the hotel room, he gave her a dose of prednisone, but as she held on tight to her epi-pen kit, she said to me, “Mom, I want the shot.”

I looked at my dad and he and I both nodded – let’s do it.

Now, I have to admit that for all of these years I have had a fear of giving the Epi-Pen. I know my allergy mom friends have done it, I know it saves lives, my pediatrician has scolded me for not giving it in a couple of close-calls… I have no explanation for my anxiety about putting this shot in my daughter’s leg. (Perhaps I was scarred by the giant epinephrine shot scene in Pulp Fiction? But it did save Uma Thurman’s character’s life, so…)

I asked my dad to give her the shot. I sat on a bed next to my daughter, while he was on the other side of her and stuck the Epi-Pen in her leg. She was looking at me, away from the shot, and said, “That was it?” It felt like barely a pinch to her. Within minutes, the hive on her face disappeared, her color came back and she was breathing easy. She was a little worried about her rapid heart beat, but we assured her that it was the medicine taking effect and that was normal.

Normally when you give an Epi-Pen, you are advised to go to the hospital or call 911. Sometimes one Epi-Pen isn’t enough, or it is given too late to reverse the symptoms. According to the Epi-Pen website “Get emergency medical help right away. You may need further medical attention. You may need a second EpiPen Auto-Injector should symptoms persist or recur. More than two sequential doses of epinephrine for a single episode should only be administered by a healthcare provider.”

Because we were in Mexico, and we had another Epi-Pen, and my dad was there, and she already had prednisone and benadryl in her system, we monitored her at the hotel. And she was fine. And then I let myself cry.

Since then, her anxiety has risen to a new level. She abstained from eating dinner, even a bowl of rice, while our family was out at a restaurant with friends one night. She refused to go to a volleyball tournament because I was not the one driving the carpool and I wouldn’t arrive until later. Luckily, the mom driving the carpool was a trained nurse and carries an Epi-Pen, but even that almost didn’t convince her. So, this is a new chapter in our lives — the Anxiety Chapter. She strives for independence and freedom, but is weighed down by her fears. I wonder how long this chapter will last.


How to Get $0 Co-Pay for Epi-Pen or Auvi-Q

Posted on January 11th, 2014 by Alison | Posted in Food Allergies, Saving Money/Sales | Read 2 Comments - Add Your Own »

Did you know that you can get your Epi-Pens or your Auvi-Q (new brand of epinephrine auto-injector) for free? Both companies are offering a $0 Co-Pay program. I wasn’t aware of these programs until a friend told me – before that I was paying over $100 each time I needed to get a refill, which adds up when you need one for school, one for home, and one more to be safe! Plus, they expire every year, so you are forced to get new ones and dump the old.

Here’s how it works:

The Epi-Pen $0 Co-Pay Offer:

What is it?

It’s a savings offer that you can print or store on your smartphone. The EpiPen® $0 Co-Pay Offer helps eligible patients save on out-of-pocket costs for up to $100 per each EpiPen 2-Pak carton. It will cover up to 3 EpiPen 2-Pak cartons per prescription fill. Just present your card at the pharmacy each time you drop off or refill your prescription.

Use it again and again.

Your EpiPen $0 co-pay card is reusable for each prescription through December 31, 2014. It’s good for up to three EpiPen 2-Pak or EpiPen Jr 2-Pak cartons at a time, so you can have several EpiPen 2-Pak cartons available in different locations.

Patient Instructions*: Present your card along with a valid prescription for EpiPen® (epinephrine) Auto-Injectors 2-Pak carton or EpiPen Jr (epinephrine) Auto-Injectors 2-Pak carton. Maximum benefit of $100 per EpiPen 2-Pak® carton where applicable. This offer may be used on up to three EpiPen 2-Pak cartons per prescription. This offer can be used an unlimited number of times until the offer expires on 12/31/2014.

For more information, visit the Epi-Pen Co-Pay Offer page.

The Auvi-Q $0 Co-Pay Offer:

Eligible Patients: Maximum benefit of $100 per two‑pack of Auvi‑Q, up to a maximum of three two‑packs per prescription. This offer can be used an unlimited number of times until 12/31/2014. Prescriber ID# required on prescription. This offer is not valid for prescriptions covered by or submitted for reimbursement under Medicaid, Medicare, or similar federal or state programs including any state medical pharmaceutical assistance program.

Patient Instructions: If prescription is covered by insurance, you may need to notify the insurance carrier of redemption of this copay card. Patient not eligible if prescriptions are paid in part or full by any state or federally funded programs, including, but not limited to, Medicare or Medicaid. In order to redeem this card you must have a valid prescription for Auvi‑Q.

For more information, visit the Auvi-Q Co-Pay Offer page.


New Summer Camp for Kids with Food Allergies

Posted on January 29th, 2013 by Alison | Posted in Babies & Kids, Camp, Food Allergies | Read 3 Comments - Add Your Own »

I am happy to announce that there is a new summer camp in Oregon for kids with food allergies. As far as I know, it is the only one of its kind. When I told my daughter about how she wouldn’t have to worry about the food if she went to a camp like this, she said wide-eyed, “It would be like I didn’t have food allergies!” Yes, my love, it would. I don’t think she’s quite ready for sleep-away camp this year (she’s 8), but I want to support this wonderful camp so that when she’s ready, she has this option.

Here is the email I received about the camp:

I am happy to let you know that Camp Blue Spruce, a worry-free camp for kids with food allergies, is now accepting campers for its 2013 session, August 18-23. Loads of fun activities and Oregon’s great outdoors will make Camp Blue Spruce the highlight of the summer for children with and without food allergies.

We are excited about holding our first session this summer. Camp Blue Spruce will be like any other summer camp EXCEPT the food will be prepared without any of the top 8 food allergens, gluten or sesame. Up to 56 kids will be able to sit down at the table and eat all the foods that are being served — a simple gift for these children, who are rarely able to eat what everyone else is eating.  Kids attending Camp Blue Spruce will have a true camp experience without the worry and anxiety they experience daily with their food allergies. Camp Blue Spruce parents can be worry-free, too!

There are a few things you can do to help make this summer a success:

  1. Register your child for camp. Visit www.campbluespruce.org for the application. Registrations are arriving already, so sign up today!
  2. Encourage your friends with and without food allergies and sensitivities to register. We have reduced the cost for 2013 to make thecamp available to more kids.
  3. Let us know if you can leave postcards at your doctor’s office, naturopath, favorite food store, bakery, library or school. If you have other ways to spread the word, please let us know.
  4. Make a charitable contribution to Camp Blue Spruce. We cannot launch this camp solely with camp fee revenue. Your tax-deductible contribution will do three important things – promote the camp, provide scholarships to campers who are unable to pay the entire camp fee, and help cover essential camp costs. Donations can be mailed to: Camp Blue Spruce, 3519 NE 15th, #225, Portland, OR 97212.

Thank you for your interest and support of Camp Blue Spruce! Please call or email if you have any questions. We look forward to hearing from you.

Sincerely,
Louise Tippens
Camp Blue Spruce Board President
503-726-8886
info@campbluespruce.org

I really hope this camp is a success!


My daughter has a new allergy and you might be surprised at this one

Posted on May 21st, 2012 by Alison | Posted in Food Allergies, Peanuts/Nuts Allergy | Read 60 Comments - Add Your Own »

Lentil Allergy Reaction

About a month ago, I gave my daughter a new soup to try: Amy’s Lentil Soup. It is delicious with quality ingredients and she ate it up one day after school, before gymnastics. I added cooked rice to it and it made a great powerhouse snack! The next week I made it for her dinner, again with rice. I think she ate two bowls, she liked it so much. Then it all went downhill…

Within a minute of finishing the soup, her voice changed and she began to have trouble breathing. She was having an asthmatic reaction. No hives, no redness, but she instantly didn’t feel well and wanted to go to bed (it was still early). I immediately gave her Benadryl and as we headed to her bedroom, she said, “Mom, bring my emergency kit.”

Because I grew up with asthma, I recognized the asthmatic breathing she was experiencing, and got an inhaler that we had been prescribed by our pediatrician but had never used. I thought to myself, “If this doesn’t work, I’ll use the Epi.” And I was racking my brain as to why she was having this reaction, though my instinct told me it was lentils since everything else in the meal was foods she had had many times before. I also knew that lentils are a legume and since she is allergic to peanuts which are also legumes, I thought there could be a connection.

After a few puffs on the inhaler, her breathing began to normalize, but slowly. Eventually her breathing was clear as she fell to sleep, exhausted by what her body had just been through. Now I know that many doctors and knowledgeable food allergy people would have advised using the Epi Pen right away, but there’s still part of me that is scared to use it, and I felt that I should try the other medications first. Luckily they worked.

Once she was asleep, I headed to the computer for answers. Sure enough I found myself in peanut allergy forums where moms were discussing the other legumes that their children were allergic to. It seemed that lentils and chickpeas were the most common legumes that peanut-allergic kids reacted to. Several of the forum members quoted the statistic of 20% of peanut allergic children being allergic to lentils or other legumes (but my allergist thinks this statistic is too high). I had never considered that lentils could be a problem, but here I was now realizing that she was probably allergic to them. I lost it. I mean I really lost it. I cried — hard. My husband was out of town and I felt alone with this knowledge and I couldn’t get a handle on my emotions. Luckily I was able to call another mom with allergic kids who could understand what I was feeling. She talked me down, but mostly just listened and was there for me on the other end of the line.

The next day I made an appointment with the allergist to test for the lentil allergy. We couldn’t get in until weeks later and I was told to avoid lentils until we could do the testing. Last Friday was the day. That morning, I called Amy’s Kitchen. I figured I should know every ingredient in that soup before we went in, and “spices” was listed as the last ingredient. Here is where I give a big plug for Amy’s: I have always loved this company and now I like it even more. The customer service person (key word here: person) understood my needs and immediately escalated my call. Though companies don’t always like to share their ingredients, because it’s like giving away their recipe, she did tell me what the “spices” in the soup were so that I could have that information to best take care of my child.

That afternoon I took my daughter to the allergist. I brought the lentil soup in one container and straight lentils that I had cooked in another container. They literally put the suspected allergens into the skin on the back to see if there is a reaction. The doctor used a commercial lentil solution for testing also. We tested a few other things while we were there too.

The results: she reacted strongly to both the lentil soup and the straight lentils. Those are the two top left wheals on her back in the picture. She did not react to the commercial lentil extract, leading both the allergist and me to believe that fresh lentils are certainly more potent and allergenic than their extract. The third wheal you see in the picture is the positive control — they purposely give histamine to make sure the person will react to something if allergic (if someone has taken antihistamines, it can affect the test). The other pricks were to rule out other ingredients in the soup (celery, for example) and retesting some other allergens.

My daughter was a trooper through the whole thing, but in the car on the way home it hit her that there is yet another food she is not allowed to have and that she has to watch out for. It breaks my heart. I hope they find a cure for food allergies in her lifetime!







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