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Posts tagged ‘anaphylactic shock’

Confession: I Overlooked a Suspected Allergen In an Ingredient List

I feel really lucky at this moment because I made a mistake, a HUGE mistake. Thankfully, Tristan is ok.

A little background: We think Tristan has an allergy to almonds. He used to drink almond milk daily and was incredibly itchy. After stopping the milk, the itching stopped. So, now, as far I as I know, he hasn’t had almonds for about a year. No, I take that back, he tried a bite of yogurt made from almonds the other day (completely dairy free) and he got a little pink around his mouth, so he didn’t have any more. I avoid almonds now because I just don’t know if he could have developed a more severe reaction to them, like he did with dairy not long ago. Blood and skin testing was always negative, like most everything else – even for his anaphylaxis to dairy. Read more

After an Anaphylactic Reaction – The Road to Recovery

It’s been just over two weeks since Tristan’s first anaphylactic reaction. Since then I’ve realized a few things and learned even more from all the supportive comments and words of encouragement from all of you (which I am extremely grateful for! Thank you!).

1) False negatives with food allergy tests are more common than you’d think. There are tons of people out there, who like Tristan, react negatively in food allergy tests, but indeed have food allergies. I was really surprised by how many of you commented that you’d received false negative results as well. Incredible! Why isn’t allergy testing more accurate?!!! Think of the children and adults going misdiagnosed (false negatives and false positives)! Grrr!! I wish in-clinic food challenges were more supported by physicians – it’s not called the Gold Standard in allergy diagnosis for nothing.

2) It takes some time to recover emotionally and physically from an anaphylactic episode. For at least one week I kept having flash backs to that night. I’d relive certain moments in my head, but the worst was visualizing (again and again) my son – swollen, blue, covered in hives, and unable to get enough air. I’m sure I will never, ever completely be free of those horrifying images. I’ve been hugging my son a little tighter and looking at him more appreciatively lately, thankful that I still have him in my life.

It’s also common to have additional allergic reactions, although usually on a smaller scale, after anaphylaxis. We’re lucky this didn’t happen with Tristan, but he did experience pain in his thigh and butt in the area where the epinephrine was injected. The soreness was the worst just under one week later, walking was quite painful for him.

3) It’s not always easy to talk about it. Tristan (just about to turn five-years-old) does not want to talk about his anaphylaxis. In fact, he tells me exactly that when I try to get him to open up about what happened. I did want to make sure he didn’t blame himself in any way for his allergic reaction, so I asked him and he assured me he knew it wasn’t his fault, but that it was my fault. Oh. Well. Yes, he was right. He said it in a way that wasn’t blaming me, but more simply that I was responsible. So, we talked about that (for as long as he would, which was not long) as I wanted him to know, without a shadow of a doubt, that mama did NOT know he was going to react that way. If I did I would have NEVER given him that cheese. He seemed to really understand and agree. Phew.

If you have trouble getting your children to open up about their food allergies or anaphylactic reaction, here are some great tips from Natalie, who suffers from multiple food allergies and has experienced anaphylaxis many times.

  • Try to get them talking while doing something they enjoy. Turn what your child likes doing into an opportunity to open up and talk about it. For instance, if he likes anything artsy, try drawing with him. Try drawing the ambulance or the hospital and prompt your child in that way. If the child is really into trucks you could set up a time and go by your local fire station and they can show him their trucks and how they know when they need to go help someone, etc. You could give them a heads up about what had happened and have them talk to your child about how brave he was. It may be really exciting for your child and provide them with the opportunity to talk about how brave he was even though it was scary!

I followed Natalie’s advice and took Tristan to visit the firemen who came to our house as first responders on the night of his anaphylactic reaction. I called ahead to the station to find out when the men who were on call that night would be available for us to meet with them. Tristan and I baked them cookies (allergy-free of course!) and took a little tour of the fire station.

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visitig our heroes

  • Connect with other with food allergies. Another idea is to find someone in the area who has gone through the same thing. I know in our area there are different support groups for food allergies and if you are able to find one you could find a food allergy buddy. FAAN has a list of support groups here and Kids with Food Allergies has a wonderful online support system. It’s a great way for parents to get together and discuss the stresses of managing food allergies as well. Often times I wish there was more of a community and connection between the kids though. I still get frustrated when people try to relate to me after a reaction because they don’t know what it feels like. The feelings during a reaction are hard to explain and overwhelming!  If you can find someone for him to relate to it may really help.

After Tristan’s reaction, I started reaching out to other parents in our area to start a play group for kid’s with food allergies. It will be a sort of support group for the parents and a great way for kids with food allergies to connect with other children going through the same thing. I cannot wait for our first meet-up!

  • Give them time to heal. Parents process allergic reactions much differently than children do, so be careful of how frequently you bring up the experience with your children. With food allergies it is such a fine line with the amount of information you give to children. Of course as they grow up, you want them to know that food allergies are extremely serious and can make them very, very sick, but you certainly don’t want them to fear eating.

I completely agree with Natalie about not wanting our children to live in fear of eating. Thankfully my little guy is quite the foodie already, but I know fears can manifest at the drop of the hat, so his eating habits are something I will keep a close eye on. I want him to be well aware of his food restrictions, but I certainly don’t want him to develop any eating disorders or anxieties about food. And I don’t ever want him to feel left out because of his food allergies. Definitely a tough balance and one that will take lots of practice.

How was your or your child’s recovery from anaphylaxis? What helped you get through the emotional and physical aspects?

It’s Just Not Worth the Risk: Our Anaphylactic Experience

Last night was the worst night of my life. It was the night of my son’s first anaphylactic reaction.

Looking back now, it all seems like a nightmare – blurry, but terrifying all the same. I’ve been thinking about how I’d write this post throughout the day. How to begin, what details to include/avoid, etc. I’ve settled on brutal honesty and to start from the beginning, with a short history of my son, Tristan’s, allergies to date. Read more

How to Manage and Enjoy Living with Allergies

My next guest approached me and wanted to write something for the blog. I think we can all learn from one another so I was happy to have her share her experiences with us. After reading her piece I was really taken aback. I found it very well written and quite informative. I also found it really interesting to read advice from someone who has lived with food allergies their entire life. Daniela is an inspiration. I can only hope my son is able to learn to manage his allergies and live his life to the full extent that Daniela has.

Read more

Top 10 Misconceptions About Food Allergies

Hi, my name is Missie, and my daughter is allergic to peanuts.  People are very emotional about food allergies, especially in regards to children with food allergies.  We, the parents of kids with food allergies, want to feel that our kids are safe when we send them off to school.  On the other side, parents whose children do not have food allergies often feel that accommodations for our children will somehow compromise their child’s education.  This is because there is an overwhelming amount of myths surrounding food allergies.

The truth is that so many kids have food allergies now, that almost every school is bound to have this issue come up.  Children with food allergies already have so many limitations on their lives, it would be so great if we could increase awareness and perhaps some schools, restaurants, airlines, hotels, etc… would start putting in policies that would help include us.  Most of all, I would really like to tell the word about the below, which I believe to be the top 10 myths about food allergies.

Myth:  The allergic food needs to be eaten to have a reaction.

Truth: Children (and adults) have had reactions just from touching the allergen (and then touching their eyes, nose, or mouth, just as we all get sick from germs) or from breathing in particles in the air (for example, chopping and roasting nuts puts particles in the air).

Myth:  Food is safe if it doesn’t contain peanuts as an ingredient.

Truth:  Cross-contamination is one of the main cause of reactions.  For example, if a line in a factory makes a peanut-containing food on it and then produces a non-peanut food on the same line, that can cause the non-peanut containing food to have trace particles inside it.

Myth:  Visible amounts of peanuts need to be eaten to cause a reaction.

Truth:  Tiny protein particles, invisible to the naked eye, can cause life-threatening reactions.

Myth:  Food allergies can be mild.

Truth:  Yes, reactions can be mild, but even if someone has experienced mild reactions (such as a rash) in the past, they can still have an anaphylactic response to the next exposure.  Allergies are unpredictable.  Here are some possible reactions to exposure to peanuts:  rash, vomiting, diarrhea, drop in blood pressure, swelling, losing the ability to breath (which will cause death if not treated immediately).

Myth:  Food allergies and food intolerance are the same.

Truth:  Food intolerance is due to a lack of a digestive enzyme.  Food allergy is a reaction from the immune system and is much more dangerous.

Myth:  As long as you don’t introduce a food to a child at too young of an age, and no one in your family has food allergies, your child will not develop one.

Truth:  Nobody knows what causes food allergies.  Also, even if no one in your family has ever had a food allergy, your child could develop one (as in our case).  No one is safe from food allergies.  They can even develop as an adult to a food you’ve eaten your whole life.

Myth:  Food allergies are rare.

Truth:  At least 8% of American children have a food allergy (Gupta, 2011).  That may seem like a small amount, but it makes it statistically likely that all schools will have at least one allergic child.

Myth:  There is a cure for food allergies.

Truth:  We are still waiting for that precious day.

Myth:  Food allergies are outgrown.

Truth:  Some are.  Some aren’t.  Only about 20% of kids with peanut allergy will outgrow it.

Myth:  EpiPens always cure the reaction.

Truth:  The purpose of the EpiPen is to buy time until the ambulance comes.  One injection may not be enough to save a person’s life.

Hosting a Child with a Food Allergy – What You Need to Know

I found this short, but informational piece in Parents Magazine. It’s for any parent who hosts a child with a food allergy at their house.

Parents/Hosts….

You should know how to use an EpiPen in case a child has a serious allergic reaction (called anaphylaxis) while in your care. Carol Jones, RN, nurse coordinator with the Allergy and Asthma Network Mothers of Asthmatics, gives instructions.

Before the playdate, ask what the child’s first reaction is. Usually it’s hives, flushing, rash, or swollen lips or eyes. It’s crucial to inject the EpiPen before the tongue or throat swells.

Remove the cap and grasp the pen in your fist, needle-end down. Press it firmly against the child’s outer thigh – you can go right through the pant leg – until you hear a click. Count to 20 and pull it out.

Call 911. Lay him or her down with the feet elevated while you’re waiting for the ambulance. If he or she can’t breathe, administer CPR.

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