High School Freshman in Coma

A 14 year old, high school freshman girl is in a coma after going into anaphylactic shock. The coma is a result of delayed CPR and an extended period of time without oxygen flowing to her brain. There are plans later this week for her to undergo surgery so that a feeding tube can be inserted.

Apparently, she was hanging out with some friends after school and they were eating Kellogg's Crunchy Nut cereal for a snack. The words "peanut" or "nutty" appear about 20 times on the cereal box. She did know the severity of her allergy. There is no mention of an epinephrine pen anywhere in the article. Her dad mentions that Benadryl had worked on past minor allergic episodes to MSG and preservatives.  Here's the link if you'd like to read the full story and see the Fox News video clip interviewing the girls father.

I really don't know how to comment. It's a very tragic tale that brings up more questions than answers.  I can say this though.  It's a perfect example of one of the main reasons that my husband and I decided to pursue the peanut clinical trial at Duke, and why we're putting Abigail as well as our family through repeated 290 mile round trips to the Duke Clinical Research Unit, multiple blood and skin tests and a daily regiment of drops for 3 years.  We were very concerned of what would happen when our very strong-willed, opinionated daughter reached the pre-teen and teenage years and was no longer under the constant supervision of either ourselves or another adult.  My husband agrees.  Ironically, when I told him about this girl in Phoenix and the tragedy, his first comment was, "that's why we are in the clinical trial."  What a blessing this trial is for our family, and we pray that the results bless many in return.

A mom wrote on a food allergy message board that she trains all of her teenage daughter's close friends on the signs of an allergic reaction and the administration of an EpiPen.  Prior to letting her daughter go anywhere with her friends, she makes sure that they are all aware of where the EpiPen is and asks that they make sure it doesn't get left behind in the car.  What a great tip.

In the meantime, we need to keep this young girl and her family in our prayers.  I can't imagine what they must be going through or how much they are suffering.

Allergic Reaction Anxiety

More than 12 million adults and children suffer from a food allergy.  Many are life-threatening, meaning that if they ingest, or in some cases are just exposed to a certain food, their body goes into extreme defense mode.  It causes their blood pressure to drop leaving the brain starving for oxygen and inflammation in the lungs to occur causing severe shortness of breath.  These people, including my daughter, have to consider every food they eat.  Everywhere they go, they bravely carry an epinephrine device with the understanding that at some point in time, a needle might be jabbed in their thigh.  They have parents and loved-ones that are super vigilant, sometimes to the point they feel suffocated and crippled.  In some circumstances, they're isolated and even blamed for causing inconveniences for others.  They've been told that they're blowing their allergy out of proportion and even labeled "disabled" by the Americans with Disabilities Act.

Many food allergy sufferers take their life-threatening allergy in stride, controlling it rather than letting it control them.  Abigail, at 7 and having not experienced a severe reaction, is mostly just upset that she can't eat the foods she wants.  As her parent, though, I've worked extremely hard to make it that way...to give her the right level of "anxiety".  Her dad and I read the labels although she knows how and when to question.  We carry her Epi-Pen, but she for the most part, confirms that we have it.  We discuss all the details of her allergy with her care-givers and create a safe environment for her, but she'll also not hesitate to ask if she's uncertain. She's not ostracized at school because she's matter of fact about her allergy.  She doesn't have to eat by herself but she does make sure that none of her lunch buddies are eating anything with peanuts.  She's not denied special treats on special occasions because there's always a yummy alternative (thanks to me).  And, thanks to the Duke Clinical Trial, we also are blessed to be able to give her something else...a light at the end of the tunnel, the possibility that in several years (just in time for those independent teenage years), she can eat what she wants without the fear of a severe allergic reaction.

But, what about those children that have actually suffered a life-threatening reaction requiring epinephrine and come away emotionally scarred?  Or, are the only child in their school that suffers from a severe food allergy and are feeling isolated?  What about those that are blamed by other kids for not being able to bring a peanut butter and jelly sandwich for lunch?  Even worse, what about being told that it's all in your head...that your allergy can't be as serious as it's made out to be? Regardless of whether you can take it in stride or not, the bottom line is, these kids live with a fear of dying on a daily basis.  Abigail may be well-adjusted (with her allergy) now, but what if circumstances change?

According to a study conducted at the University of Southampton, the quality of life suffers for these children.  The study suggests that "children with peanut allergy have a worse quality of life than those living with insulin-dependent diabetes."  They found that the children with peanut allergies felt more threatened by potential hazards within their environment, felt more restricted by their allergy regarding physical activities, and more worried about being away from home. In contrast, the children with diabetes were more upset about their “restricted” diet, and none mentioned a fear of dying.

That's just the children.  Being a parent of a child with a life-threatening allergy is no walk in the park either.  And, we have the added burden of not projecting our fears onto our children.  There's a good article on the Kids with Food Allergies website.  Titled "Raising a well-adjusted child who happens to have a food allergy", it gives several steps to do just that.  A few include, never let them see you sweat, make your home a safe haven, don't let food allergies define your child and don't make your life revolve around food.

As mentioned in my last post, Abigail has had bouts of anxiety over the last year.  It typically shows up at night around bedtime and manifests itself as a belly ache.  When I ask if it's related to her allergy or participating in the clinical trial, her answer is always an adamant "no".  It could be her age.  It could be school although she does well. I've been doing some research and there is a link between having anxiety as a result of consuming a food that one is allergic too.  That's the next topic.

An EpiPen Experience

Let me first start out by thanking the mom that is allowing me to post about her family's recent experience requiring an EpiPen.  She originally shared her story with members of the Parents of Allergic Kids Yahoo Group.  There is some really good lessons that I'd like to share with my readers so I asked if I could also publish her experience on my blog.  Here's her story:

"My son had an allergic reaction which resulted in the use of the epipen. This is only the second time that he has needed the epipen in his 13 years.

But the good news is: the EPIPEN WORKS!!!!

My son is allergic to peanut, treenut, dairy, egg, sesame, mustard. We also avoid fish and shellfish. The reaction occurred at a restaurant we visit quite regularly…the manager knows us and they get his food started when they see us walk in. The reaction started when he took bites of chicken and carrot and had some of his drink…so, we're not sure where the contamination was.

His tongue and throat felt itchy and his throat started feeling clogged. He took Benadryl. I asked him if maybe he was feeling itchy and had a lot of mucous because he had stopped his Zyrtek (in anticipation of upcoming allergy skin test) - this happens to him sometimes. He said that he knew he was having a reaction because the water felt like it was barely trickling down his throat…he said that it was like it went into his throat but it was going down one drop at a time. On way to hospital by this time. I kept telling him to drink his water…wanting to monitor his swallowing plus hoping to get the Benadryl in his system faster. He said he thought he might be a little better so I thought the Benadryl might be working. Then, 1-2 minutes later, he said that all of the sudden he feels like there is something huge stuck in his throat and like someone is sticking a knife in the bottom of his throat. Pulled over and did Epipen.

Last time he needed the Epipen, I was holding the Epipen and my husband was coaching me to "do it." This time, I was telling my husband to do the Epipen.  When you're the one holding the Epipen - it's difficult to convince yourself that you need to give the shot. Soon after he had the Epipen, my son described the feeling to me as 'all the stuff in my throat is dissolving and now I can swallow.'

Normally - the appropriate protocol is to call 911 after giving the Epipen. We were close enough to Levine Children's Hospital and the Epipen was obviously working so we drove there and I called to alert the ER that we were on our way. They kept us until it had been 4 hours since the "incident" and also gave him oral steroid.

Of course, ask your doctor for the best individual action plan because I'm not qualified to give this kind of "advice." But, I learned recently (since the reaction) that at the first sign of any throat symptoms - give the Epipen. I had always thought that you should start with Benadryl. However, the Epipen is not scary, does not hurt and works quickly and effectively.

One thing the hospital didn't tell us…which I think they maybe should have…was to keep Benadryl in his system for a while. That evening, he looked and felt terrible - pale, shaky, nauseous - so I called our pediatrician just to get reassurance that all of these symptoms are expected side effects of meds. since it was already about 7 hrs. since Epipen and 5 hours since oral steroid. The pediatrician said she suspected that he was feeling side effects of meds - probably steroid - and she also told me to give him another dose of Benadryl.  After she suggested that…I remembered that we got that same recommendation after his reaction 3 years ago. However, at hospital discharge, they did not tell us to give a follow-up dose of Benadryl…wonder why that wasn't part of their protocol."

I really hate that she and her family had to experience this, but I'm so glad she shared.  The part describing what her son was feeling as his throat was swelling was particularly moving, but also very helpful if I ever needed to help Abigail identify what she was experiencing.  A few take-aways: 1. No matter how many times you frequent a restaurant or purchase what you feel is a safe food brand, for people with severe food allergies, there is always a risk.  I feel most confident with manufacturers that label a food allergen if there's  even a small risk of cross-contamination, and of course, if I prepare the food myself.  2.  Always carry an EpiPen and do not hesitate to use it if the situation calls for it.  Our doctor at Duke told us that if in doubt (obviously there's no doubt if someone is having difficulty breathing) the best way to tell if you should use an EpiPen is if multiple systems are reacting.  For instance, if you are experiencing hives (a skin reaction) and vomiting (a stomach reaction), use the EpiPen and then call 911.  3.  I had not heard about continuing to use Benadryl even after leaving the hospital.  It's good advise.

I truly believe that the best way to arm yourself and loved ones against the life-threatening effects of a food allergy is knowledge.  Thanks to this mom for giving us another lesson.

EpiPen Practice

You may have already heard of or even done this, and I just might be behind the times, but when a parent at a recent PAK meeting made this suggestion, I couldn't believe that it isn't something recommended by doctors and educators everywhere. It was suggested that parents and allergic children carefully, and with full adult supervision, practice administering a shot of epinephrine using an expired EpiPen and an orange. I thought this was a fabulous idea and had 3 expired pens in the top of my pantry. They've been there for some time waiting to be taken to the pediatricians office for disposal. What a great use for them!

This last Sunday afternoon, Abigail, her daddy and I all got to practice. That poor orange was full of holes by the time we got finished. We recorded Abigail's experience to share with our readers. I should note that prior to recording, we sat down with Abigail and discussed in detail each of the steps and explained how careful she should be with the needle. We also made sure that she understood that epinephrine is not something to mess with and should only be injected when she could not breathe (like she would anyway...it's a needle right?). When she finished her practice shot, she made the comment that she liked doing it and that she wanted to do it again. I guess that's better than being freaked out by the whole experience and wanting nothing to do with her EpiPens. Of course, after seeing the needle, we all developed a slightly better appreciation of the seriousness of what she so casually carries around.

Right now, she carries 2 EpiPen Jr. Auto-Injectors, 3 antihistamine tablets, an instruction sheet and medical release form in a cute monogrammed bag. It goes with us every time we head out the door. That bag has been handed to more people than I can count: Sunday School teachers, coaches, camp directors, friends' moms on play dates, grandparents, etc. After 4 years, it's now just second nature. I keep another set of EpiPen Jrs. at home in the kitchen and during the school year, a set are kept in her classroom and go with her teacher to lunch, to Specials, to the playground and on field trips. There is also antihistamine medicine (liquid and chewable) in the pantry and upstairs in the medicine cabinet. And, until I know with 100% certainty that my 2 year old son is not also allergic, I keep one of those new, very convenient, single dosage Benadryl spoons in his diaper bag. Wish those had been available when Abigail was a toddler. Back then I had to carry a sticky bottle and a dosage cup.

At a recent visit to Duke, we got a new prescription for the adult EpiPens. At 47 pounds, Abigail is right on the edge for the weight requirements. It's still recommended that she carry two pens. Evidently, 35% of reactions require a second injection. It's even possible to have a secondary reaction an hour or so after the first. The Center for Anaphylactic Support provides some other good information as well as offers a free EpiPen expiration date reminder service and a $5.00 EpiPen rebate.

I ran into a mom the other day at church whose daughter recently finished the clinical trial at Duke using peanut flour. The daughter is now eating peanuts daily to maintain her tolerance. How exciting! Anyway, the mom didn't have EpiPens in her purse and she said it felt really weird. I just pray that I have that problem too!!