Today I saw this series of photographs called the face of anaphylaxis. A mom of a milk allergic boy photographed how scary and life threatening a milk allergy really can be. I feel so lucky when I see this because we have never had to deal with a reaction this serious. Bo has had an anaphylactic reaction where I had to use the epi-pen, call 911 and spend the afternoon in the ER while they monitored Bo but the epi-pen made everything better and Bo’s reaction never worsened. I can’t even fathom how difficult it would be to have your child on a ventilator because of a milk reaction. That is one brave mother, family and little boy.
This series reminded me of some photos I had on my phone. Ever since Bo’s anaphylactic reaction I have wanted to make it a point to try to take a picture of Bo when he has any kind of reaction. I have to say that it is really hard to remember to take a picture when you’re in full on panic mode….but now that we have been doing this for almost 2 years I think I am starting to get better at managing my anxiety in the moment and in the last few months I have remembered to snap a picture of Bo once I knew he was getting better because the Benadryl appeared to be working. I thought these photos would be handy for a few reasons but one main reason I wanted to have them was so that I could show other care takers what to look for or what a reaction can look like for Bo.
The photo on the bottom right is a NORMAL/NO REACTION photo of Bo so that you have something to compare the other photos to. These were all pretty mild reactions and were just treated with Benadryl. We also have NO idea what caused any of these reactions. If it’s hard to tell in some of them his eyes are red, bloodshot and his nose is running…some of the first signs (along w/hives) that he is having a reaction.
A couple of weeks ago when we were at ECFE one of the teachers mentioned that they gave the kids goldfish for snack but that they didn’t give any to Bo. She said this to me pretty nonchalantly and it was at the end of class as we were trying to gather the kids, coats, all their stuff and head out the door so I was rather distracted and it didn’t fully sink in – the fact that she just said that other kids were given goldfish at snack time. Then I left with Bo, walked down the hallway and noticed he was rubbing his eyes and one of them was bloodshot. By the time we made it across the parking lot and into the car he was sneezing and rubbing his eyes….that’s when the one teachers comment finally sunk in – Bo was at the same table as other kids who were eating goldfish (all goldfish contain dairy) and he must be reacting to that. Luckily I was able to react right away, gave him Benadryl, took him home and gave him a bath and the reaction calmed down. I was frustrated and disappointed because we had so many successful weeks of being at ECFE and being reaction free and I just felt totally bummed that this happened. I was conflicted about what to do because honestly it just sounded so overwhelming to have to call the teacher, ask her about the goldfish and explain to her again that Bo is so allergic to dairy that he can’t even touch it. After discussing with my husband I knew it was best to call the lead teacher to discuss with her, plus, I wanted to do another session of ECFE and was hoping to take class with the same teachers because I had felt so good about how they had handled his allergies. When I called and spoke with her she did say that she was giving other kids goldfish and she was soooo sorry because she didn’t realize that Bo couldn’t even touch/be around dairy she just thought he was safe as long as he didn’t ingest it. I am not trying to blame the teacher at all and I know she feels absolutely horrible but this was a good reminder for me that I need to be really clear about Bo’s allergies, his sensitivity to even touching those foods, and that I maybe need to talk about it or bring it up multiple times so that his caregivers do not forget. I know I explained to the staff that he was allergic, even to the touch, but I also know that those teachers have so many kids with so many different needs and that it’s a lot to remember each kids specific situation/need.
I spoke with this teacher again at our class today and asked her for advice/suggestions on things I could do when I am leaving Bo in the care of others outside of our house – the other big concern I have right now is leaving him in the sunday school at church. I asked if it would be helpful if I put a sticker on him every time that listed his allergies, my thought on this was that if an adult saw that he was sneezing and rubbing his eyes and then noticed his sticker maybe it would trigger them to call me or it would just be a reminder for them that this is the little boy with the severe allergies, his teacher thought this would be a good idea, and she also said to me “don’t be afraid to scare the hell out of the teacher!” I was sort of relieved to hear this coming from a Teacher. I never want to offend or bombard someone by telling them so much information but I am realizing more and more how much I need to constantly remind people and talk about Bo’s specific needs. She also suggested always leaving a written action plan. This prompted me to look online for other action plans mom’s have created for their kids and the ones I was finding were almost too detailed and too much information for someone to sort through at a time of panic or in an emergency . I just wanted something basic that was very clear and easy to follow. I think I found just the answer and I am feeling so good about having this product to leave for those who are caring for Bo. Medpax – what a great idea! This product is a container that will hold all of BO’s medications that we keep with us at all times (Epi-pen, Benadryl & Inhaler) and also has a very simple and clear action plan along with Bo’s picture on the front of the case.
If you have a food allergic kid and have a different ‘action plan’ that you leave with caregivers – what do you use? I would love to hear how other people handle this. Has anyone used a Medipax. I’ll have to write again after we’ve used it for a bit and will let you know what we think.
I’m going to start blogging about our life with an almost two year old who has severe food allergies. Keeping bo safe and feeding him is a constant challenge and something that has really changed our lives. I feel like there are not enough stories/blogs about families dealing with this similar situation so I have decided that I will try to document what is working for us in our lives, what is not, and hopefully this can be a place where anyone dealing with the same thing (or even not) can share their thoughts or suggestions because we are ALWAYS looking for ideas on how best to cope.
My son, Bo, is allergic to DAIRY, EGG and NUTS. We found out about his allergies when he was about 3/4 months old. We have had the most experience with Bo reacting to dairy and have found that allergy to be the most difficult to work around. If you would like to know more about our story, Bo’s allergies, or past experiences – please feel free to contact me at firstname.lastname@example.org.
On this blog I will also keep a tab that lists some of the “safe” foods that we use. I am hoping that this will be a good resource for any other families with allergies looking for ideas and also a place for our families and friends to get ideas of what bo CAN actually eat! If you are a family dealing with similar allergies and have other food/snack ideas I would LOVE to hear them.
Thank you for taking the time to read this and thank you so much to those of you who accomodate and support us! We know it’s not easy.