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 EpiPen was injected and where a second dose of epinephrine was given to him. 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. Natalie writes about food allergies via her blog at Behind the Reaction.
- 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.
- 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?