Apologies and thank yous!

To the parent with the perfectly healthy child, to the parent whose child does not have food allergies, to the parent who doesn’t watch your child like a hawk before, during, and after meals, to the parent who does not have to inconvenience others because of your child’s issues:

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 APOLOGY

I am sorry that my child’s medical needs inconvenience you.  I am sorry that you are limited in your choices for your child’s lunch.  I am sorry that our school constantly sends out reminders about which foods can and cannot be brought to school.  I am sorry that you are sometimes late for work due to the long lines at drop-off in the morning due to the school-enforced rule that everyone wash their hands.  And I’m sorry that I can often sound harsh and repetitive when talking to you over and over about my child’s allergies, the dangers surrounding him daily, and my expectations of you as a fellow parent.  I know you are bombarded with demands from your life.  I know that you may have your own unknown issues going on.  I know life may be difficult for you because of other issues, and I’m sorry.

I will continue to be an advocate for my child, working to bring awareness to this issue in order to protect him and many others facing this scary issue; however, I promise to work on my delivery.  I promise to respect your feelings and come at you in a better way than my renowned attack-dog-like method.  I ask for your respect and understanding as well and hope that we can find a way to collaborate and find a solution that works for everyone.

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THANK YOU

Thank you for checking in on me after my son’s hive breakout.  Thank you for the prayers sent our way each day.  Thank you for your quick actions when he reacts while in your care.  Thank you for calling/texting to ask what you can fix or bring to a party or class event.  Thank you for noticing the difficulties that come with having a child with food allergies even though your child does not.  Thank you for teaching your child kindness and respect when dealing with my child’s allergy.

While there are many out there who complain and criticize our situation, you are there, supporting us, reminding us that there are still kind people in the world.  You encourage us not to bubble our child up and never let him out of the house, out of our sight.  You make my children and me feel welcome in your home. You give me hope for our lives.  I know because of people like you we can survive food allergies, cope with them, and hopefully one day over come them.

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~Lacey

All it takes is one

From Soup to Nuts Allergy Free

One call, one email, one concerned parent, that’s all it takes to affect change for those with food allergies.

About a month ago, I sent an email in to the Tybee Island City Council expressing my concern for the fact that people carelessly discard food items like peanut shells on the beach.  I never expected the quick responses I have received.

Despite the fact that food items like peanut shells are biodegradable, discarding them in the sand is still considered litter.  By pointing out how dangerous food items can be for those with food allergies, we have given the local police force a new angle when approaching beach-goers who litter.

To get the word out, Tybee Island City Council has suggested developing a PSA to be aired on their government television channel and possibly other local news channels.  This is the exciting piece.  The daunting, more nerve-wrecking piece is the fact that we will probably need to raise funds in order to make this a reality.  We are talking about $5000.

So this mom has started looking at fundraising ideas, reaching out to other local moms, and is hoping that I can turn the concerns of one mom into the action of many moms.  Stay tuned for our  journey.

~Lacey

 

Tips for getting an affordable Epi-pen

Food allergies are scary, exhausting, and difficult to manage.  From the first reaction, the doctors’ appointments and testing, the food-purge, and the education and advocation of others, there are so many bases you have to cover, and so many discussions around each.  However, people often forget to mention the costs.

When I worked in a Medication Assistance program, we often used a pharmacy resource call RXOutreach that sold expensive medications to patients who were no more than FPL.  Unfortunately, looking now they are charging $200 for a pack of two as well.

Those who don’t have insurance and are no more than 200% of the FPL are eligible for Mylan’s Prescription Assistance Program (PAP); however, the paperwork required and turnaround time for processing could be 2 months or more.  The application has to be printed and mailed in with financial documentation, proof of no insurance, and a prescription from your doctor.  The application can be printed here: mylan-epipen-frm

In one of my online support groups, citizens from Canada have suggested having your doctor send in your script to a Canadian pharmacy and have it mailed to you.  The cost would then be between $5 and $20.  This could take a month to receive.  My only concerns with this is knowing whether or not the pharmacy you use is legit and the fact they are not FDA monitored/approved.

If you have insurance, do not fear; there is still an option for you. Mylan also offers a My EpiPen Savings Card, boasting a $0 copay for 6 pens for those with insurance.   This, of course, comes with an asterisk.  The card only covers $300, so if your insurance still expects you to pay $300, then that is your responsibility.  Lauren Reiniger has a blog post about her own struggles with the cost of Epi-pens despite the fact that she has insurance: “The EpiPen Might Save My Life, But Not Before it Breaks My Bank“.

Unfortunately, there are those who cannot wait for a prescription from Canada or the drug company, those who aren’t eligible for prescription savings, and those with no money, so what choice do they have?  Is it fair that they should take the chance, risk their life?  The issue of food allergies already has so many added costs, it doesn’t make sense that this one life saving drug should be so inaccessible to those who really need it.

~Lacey

*Permission granted by Lauren Reiniger to mention/link to the post “The EpiPen Might Save My Life, But Not Before it Breaks My Bank“.

Beach: a fun vacation getaway or food allergy mom’s worse nightmare?

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Going to the beach, spending a day in the sun, waves and the sand, and digging for sea shells is typically a fun time even for those who live there.  My son, DR, loves the sand.  Living in Savannah, Ga, we are 20 minutes from the beautiful beach of Tybee Island.  On family days, we drive down to allow DR the freedom of running through the sand, splashing in the waves, and looking for buried treasure.  One on trip he even found this perfectly preserved dry seahorse.

Unfortunately, one trip to the beach ended all of our fun.  During this last trip he was digging through the sand and came across a mound of peanut shells.  My heart fell into my stomach.  We snatched him up and left immediately.  I have seen hundreds of people eating peanuts at the beach, and never thought anything of it.  But now I realized that it is a very common occurrence to just throw the empty shells on the sand.

Peanuts are a natural product, and the shells will eventually deteriorate over time.  For a while after this beach trip, I assumed that this was not considered littering since it was a natural item; however, the fact that we could not visit the beach because of this  bothered me.  So I recently reached out to the city council of Tybee Island, just suggesting that they post signs asking people to be thoughtful of those with food allergies and not just throw their food items on the ground.  The council’s response was quick and enlightening:  Peanut shells ARE actually considered a form of littering and warrants a ticket if caught.

I did some online-digging of Tybee Island policies, and nowhere did I find anything actually saying this is a form of littering.  The most detailed description of Tybee Island Beach Rules and Regulations* comes from Savannah.com*.  It does list food and fruit peelings as litter items which should make people think of peanuts as trash and litter, but like I pointed out before, even as a mother to a child with a severe peanut allergy I thought it was perfectly common and acceptable to throw empty peanut shells on the beach.

So what needs to be done to correct this false mindset?  I believe Tybee Island City Council is working towards a solution, but I think us moms of children with food allergies need to help.  Not just in this instant, any opportunity that presents itself to be an educator and advocate for the food allergy cause.  If we want to stop living in fear of food allergies, we need to take a stand and put into place policies and structures in our communities to make life safer and fun for everyone.

As I work with Tybee Island City Council toward a solution that benefits all I will post updates.

~Lacey

*Permission granted to link to Savannah.com

10 phrases allergy moms “love” to hear

  1. How allergic is your child?  When I tell someone my child has a food allergy, I’m telling them so that my child can avoid the allergen.  It doesn’t matter “how” allergic he is.  He doesn’t need the food, and we don’t need the agony of an allergic reaction.
  2. Is he really allergic or do you just not want him to have sweets? Of course I don’t want to constantly shove sweets down my child’s throat, but just because he can’t have certain foods does not mean I don’t let him have sweets.  Besides, why would you ask a mother (whether or not she has a child with food allergies) if you can give her child sweets?  Why can’t you offer my child an apple or even better a non-food item like stickers?
  3. I feel bad that he can’t have the same food as other kids.  I don’t want him to feel left out.  Most moms of children with food allergies come prepared with alternative options for their children.  While the children may feel a little left out from not getting to eat certain foods it is far better than the alternative of them eating the foods and having a reaction.
  4. Ugh…my life is so inconvenienced by your child’s food allergy.  Why do daycares, schools, airplanes and public buildings have to be peanut free?  First, if you seriously can’t wait until you get home to eat your peanut items, then maybe you have a bit of an issue?  Second, the severity of some allergies like peanuts differ from person to person.  Some people react just by touching an item that someone who had peanuts earlier touched.  It’s like with the flu.  If you have the flu virus you shouldn’t be bringing it out into public where it can hurt others.  Just keep your peanuts and your flu at home and to yourself.
  5. How long has it been since your child has tried this food? Maybe he’s built up a tolerance.  Yes, some people may grow out of their food allergies, but some of them may get worse.  Currently, there is no way to know either way.   There are some research efforts underway to see if there is a cure for food allergies.  No, we will not test his tolerance right now in a non-medical environment without his doctor’s consent just because you want to see if he reacts.  I can tell you that I am probably losing my tolerance for you.
  6. You must have eaten too much of that food during your pregnancy or while you were breastfeeding! You must be ignorant. Thank you for blaming me for my child’s medical condition though. Bless your heart. Do your own research and know that we blame ourselves enough for our children’s reactions without others trying to blame us too.
  7. Giving them a little bite won’t hurt. Right, and neither will letting them hold a rattlesnake. To allergy moms those two things are equal. Both could kill our child. Let me say that again to make it clear: ONE BITE COULD KILL MY CHILD. I’m not willing to take that chance. You shouldn’t be either. Killing people is frowned upon last time I checked.
  8. Oh, they’ll grow out of it. We actually want this. We desperately want our child to grow out of their food allergies. For them and for us. Unfortunately we don’t know if that will happen. Neither does my child’s allergist. I’m so glad you know though.
  9. It was processed in a plant/on a conveyor belt/on a counter top with the allergen, but it doesn’t have the allergen in it.  It should be safe. If it wasn’t potentially dangerous, then why do the products have to tell you they were processed near the allergen?  What if your favorite food item said processed by someone who had the flu or TB?  Would you feel comfortable chancing contamination?
  10. This one we will never hear said to our face. We’ve heard others say it about other allergy moms when they don’t realize we are listening or don’t realize we are also allergy moms. They’re just doing it for attention, I doubt their child even HAS a food allergy. Don’t be this person. This person is not a nice person to be. Please know that we are not seeking attention. Most of us HATE having to ask what ingredients are in everything when we are at a restaurant, a person’s house, on vacation, etc. I don’t like inconveniencing people. I hate it. I’m a southern girl to my core and I love making people feel at ease. I’m way out of my comfort zone when I have to seek people out to ask questions. I will do it for my child’s safety EVERY SINGLE TIME no matter how uncomfortable it makes me. I can assure you if I could take it away from them I would in a heartbeat.

This post is not intended for people who genuinely care about our children’s safety. If you are asking us questions that are intended to really help our child or if you are wanting to know details so that you can make them or give them a safe treat we welcome that. We always know your intentions as soon as you speak though. We can tell when you are a caring person and when you’re just trying to be a busybody or a tush.

~Hope & Lacey~

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It takes a village

When you send your child out into the world, you worry that they may not be cared for as you expect.  When your child has a food allergy, this fear is amplified by 1000.  I have struggled with this a lot lately as I’ve seen mothers and fathers post about the inconvenience food allergies cause them and their child(ren). For a parent of a child with severe food allergies the memory of that first hive break out or the unresponsiveness of the first anaphylactic reaction is enough to worry anyone. Knowing that there are school policies in place for lunch and specific foods allowed gives me enough peace of mind to not just keep my child at home – and yes, this was a comment a parent made: “All kids with food allergies should have to be home-schooled.”  I posted something similar to this on my Facebook page and was shocked to see parents who agreed with the statement or believed that kids with food allergies should be segregated.

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This issue even affected our decision in which school to place our child, as parents from the one he was going to attend started cyber ranting when the administration sent out a reminder that certain types of food were not allowed as part of school policy. These were not new policies that had been made for my child; these were already in place when we applied, but as I saw parent after parent complain about the “issue” I realized that in order to protect my child we could not go to this school.

I never wish a food allergy on anyone, especially a child, but I hope the world becomes more understanding of the dangers that lurk for those who do suffer from one.

 

~Lacey