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One Mother's Story

2/20/2013

 
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At the Mylan Blogger Summit, I had the pleasure of meeting some truly inspiring women.  One of these women was Jenny Sprague from Multiple Food Allergy Help.  I am very happy to be able to share her story with you.

Jenny is a stay at home mother of two beautiful boys.  Caleb is her oldest and will be seven in March and Jacob will be four in September.  Both of her children have food allergies.  At a year old, Caleb was diagnosed with allergies to dairy, peanuts and tree nuts.

Shortly after Caleb was diagnosed with a dairy allergy, Jenny learned that her son was also allergic to peanuts.  She found this out when she was snacking on celery and peanut butter while feeding Caleb in his high chair.  Caleb reached over and grabbed Jenny's snack.  Without even ingesting any of the celery and peanut butter, his face immediately swelled up.  He also developed a runny nose, a rash and wheezing.  Jenny panicked and didn't know what was going on.  She put him right into the tub and gave him a dose of Benadryl.  At the time Jenny didn't have an Epipen and thankfully Caleb was fine.  Jenny then had him tested for peanuts and tree nuts and he was allergic to both.

When Jenny would bring up her concerns to Caleb's doctors, they would blow all of them off and offer other excuses for what may be causing his issues.  They even refused to do allergy testing and they would not refer her to an allergist.  This is when Jenny sought out an allergist on her own.  Jenny said, "He had suffered his whole first year because I just did not know that he had allergies or that it was food causing all his woes."     

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Caleb's first peanut reaction prior to knowing he was allergic.
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Jacob having a reaction to peas at six months.
When Jenny had Jacob, she was much more aware of what to look for.  He had baby acne and eczema and by six months of age he was diagnosed with a long list of food allergies.  Just before turning two years old, Jacob was also diagnosed with Eosinophilic Esophagitis and bilateral kidney cancer, [Wilms], and Hemihypertrophy.  In Oct. 2012, he had to get a feeding tube and was placed on an elemental [formula] diet because he had developed allergies to so many foods.  He was allergic to meats, grains, milks and there was not enough food to support growth and nutrition. The only foods Jacob can now eat are cranberries, carrots, pears, cucumbers, Enjoy Life Chocolate and he is able to drink water.  Jenny said, "EoE is a maddening, frustrating disease.  Life is easier with the feeding tube. Thank goodness it's an option."  Jacob will soon have to be retested to make sure he hasn't developed new allergies to any of his "safe" foods. 

Jenny will never forget the time Jacob had his first anaphylaxis reaction.  It was in the hospital after having major surgery.  Jenny had given the hospital a list of Jacob's allergens and it was in her son's chart.  The morning after his surgery Jacob was given a tray of food containing wheat free and gluten free toast and juice.  He only had a little bite, a drink of juice and he didn't want anymore.  Shortly after, Jenny heard her son coughing and clearing his throat.  Her first thought was that his throat was irritated from being intubated during surgery.  Jenny then noticed welts flaring up everywhere on Jacob and she immediately called for a nurse to come help them.  The nurse grabbed an Epipen and gave him the shot.  Jenny recalls coaching the nurse because she was holding the Epipen incorrectly.  Jacob's breathing improved within seconds after receiving the shot of Epinephrine.  Jenny later found out that the cafeteria had changed distributors and the new gluten free bread had egg in it.  Jacob is allergic to egg.  Jenny said, "When it was done, I was relieved. If he had to have a reaction, it was the perfect place. I saw it, recognized what it was, knew what was needed, and was able to stay pretty calm through it.  I look at it as the perfect training run."

Jenny started a blog about two years ago called Multiple Food Allergy Help.  She wants to help other people that are in a similar situation and struggling with what to feed their children with multiple food allergies.
 
The most important thing Jenny has learned is to always be an advocate for your children.  If something is wrong, speak up and always trust your instincts.  She wishes and hopes that one day her younger son can outgrow some of his food allergies and be able to live a healthy life without needing a G-tube.  Jenny also hopes to raise her boys to be knowledgeable, responsible and careful when it comes to their food allergies.  She said, "I want my boys to advocate for themselves with confidence."  
      
Courage is like love; it must have hope for nourishment
–Napoleon Bonaparte

Get Up to $100 Off Your EpiPen Co Pay

2/20/2013

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This year marks the 25th anniversary of the U.S. Food and Drug Administration approval of
EpiPen® (epinephrine) Auto-Injector. In celebration of this anniversary and as part of our continued commitment to access, Mylan Specialty has developed a 25th Anniversary "$0 Co-Pay Offer". 

This is a great offer for those families who keep EpiPen 2-Pak or EpiPen Jr 2-Pak cartons in multiple locations, such as school, the babysitter’s, grandparents, home or the office.

The offer is available to both cash-paying and commercially insured patients. This  offer provides up to $100 off per EpiPen 2-Pak®. Certain restrictions apply. Patients can re-use the offer with an unlimited number of prescriptions until the coupon expiration date, December 31, 2013. The offer is valid on up to three EpiPen 2-Pak or EpiPen Jr 2-Pak® cartons per prescription. The co-pay card is available through physicians across the country this week. Patients can also contact Mylan Customer Service at 1-800-395-3376 with any questions, and can obtain additional information about the co-pay card at www.EpiPen.com or by clicking here.
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Auvi-Q Epinephrine Auto Injector

2/5/2013

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My husband came home this evening with the new Auvi-Q Epinephrine Auto Injector. This is the first and only epinephrine auto injector that actually talks you through the injection process.  I have to say that this little device is super cool.  The instructions are clear and it is so easy to use.  I love it!
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My son’s prescription on his EpiPen JR was expiring and I had planned on just getting new EpiPens, but our insurance deductible went up this year and so did the price of the EpiPens. 
So this is when I decided to take a closer look at the Auvi-Q.  To be honest, I only decided to try it because of the $25.00 coupon I printed off of their website. It states “Most insured patients pay no more than $25.00.”  The key word was “most” and then the fine print.  So I didn’t get it for $25.00, but I did get $60.00 off and it was still a little less than the EpiPen JR.  The coupon is also good for your two first prescriptions.  You can sign up for Auvi-Q Support Program here and then you will get the coupon.

If you do decide to get the Auvi-Q then you may have call around and speak to different pharmacies.  I called at least five and they had no clue what I was talking about.  I then decided to ask my fellow No Nuts Moms Group members and someone knew of a pharmacy close to my house that would order it for me.  It only took 24 hours for injectors to come in.

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To learn more about Auvi-Q go to their website. 
The Grateful Foodie did two great reviews of the Auvi-Q.  Read her two blogs here:
Inspiring- We Met the Auvi-Q and Will it Fit: Auvi-Q in Epi Pen Carriers?

Watch You Tube Demo:

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Tips and Steps to Successfully Managing your Food Allergies

2/2/2013

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Sloane Miller was a guest speaker at the Mylan Blogger Summit in New York City.  She provided us all with a lot of great tips and suggestions to successfully managing food allergies.

When you first get a food allergy diagnosis, whether it is yourself or your child, it can be overwhelming.  There is so much going on inside your head and it is hard to process all of the information.  I wish someone would have given me a detailed plan when my son was first diagnosed.  Sloane's first set of tips were to identify the issue, break it down and then tackle each issue one by one.  The end result will be that you can live life and not let anything hold you back.

You first need to understand the food allergy diagnosis.  One good way to start is to set up a consultation with a board certified allergist.  Be sure to create a full page of you or your child's health history.  This includes any food allergic reactions that happened prior to diagnosis.  Then there should be a second page with all your questions, which may include; what does this food diagnosis mean?  What do I need to avoid?  What is my Anaphylaxis Action Plan?  You need to have that "I know feeling" when you leave that office.

Communicating your food allergies with others can be a challenge, but it is very important to be clear, factual and firm.  Sloane Miller said, "You have nothing to prove."  "This is real, this is serious and this is how you take care of it."  You should never apologize for your food allergies.  I know this is something that we all tend to do, but this is not your fault or your choice.  Food allergies are real and serious.

Forming positive food relationships is very important.  Surround yourself with "safe" friends.  These are friends that never question your food allergies.  It is also good to have food allergy allies.  These are others that have food allergies themselves and can understand what you are going through.  The best place to start is a local support group.  Find one in your area here.

If you have a young child with a food allergy, it is very important to prepare your child. There are many online resources available for children that are age appropriate. As your child gets older, you need to continue to talk about their food allergies and make sure they are always prepared.  There may be certain things that they do not feel comfortable talking to you about, such as dating and kissing.  It may be easier for them to talk to their allergist about certain aspects of their food allergies.  It is a must that your child has a direct line of communication with their allergist.  When your child goes to the allergist, have them write down their questions.  This way they leave the office feeling like they got all of their questions answered and the parent also feels better knowing that their child isn't out there guessing and wondering.  A recent study done by Mylan revealed that only 47% of parents tell their teen that when going on dates, they should  tell their date about their life-threatening food allergy.    Read more here.  

If you are having a difficult time coping and managing you or your child's food allergies, try talking to a professional. There are excellent food allergy coaches and consultants out there that can help you get the food allergy confidence that you and your child need. Click here to see if a list food allergy coaches.  

Watch this video by Sloane Miller:
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    Lisa Rutter
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