When the Quote is the Everyday Struggle of an Allergy Parent!
“We have nothing to fear, but fear itself.” – Franklin D. Roosevelt
When the quote is our everyday struggle! This quote just hits home for many reasons. As an allergy Mom this is life, fear! I have fear when I’m up, fear when I’m asleep, fear seems to just be there at all times of the day and night. It’s the fear of something happening. The fear that if you blink something can happen. It is everywhere, it is all around you with every reach, and around every corner. It never goes away and always has you on your toes.
Every person has a different amount of fear they feel. I can only speak about what I feel. I can only imagine if this is how I feel, how do the people with deadly allergies feel. I mean at the end of the day it is their lives that are at risk every day. I think if my daughter's allergy wasn’t contact too, I wouldn’t be so fearful. It would be easier to manage if she was just ingestion. And no, I’m not saying ingestion people have it easy at all. To be clear what I’m saying is it’s a lot easier to only have to worry about swallowing something than swallowing and touching something will give you anaphylaxis. The poor people who have ingestion, contact and air reactions, those are the people who we should feel bad for and send out all the extra healing energy we can!
Here is my story, and I will tell it the best I can from my point of view. When we went for my daughter’s year-old visit, I thought it would be like any other visit. Discussion with the doctor about how she is doing, milestones, what to expect next you know all that jazz. And it was for the most part, I remember her saying ok Mom, you can now introduce her to peanut butter in a very small amount. She stated no bigger than pea sized and just once and waited to see how she would do. I won’t lie on the way out I was thinking all things peanut butter, like cookies, pie, sandwiches, English muffins, and the list can go on. However, life had a very different idea of what should and shouldn’t play a role in my daughters’ life. I took her home and decided to give her peanut butter tasting a try. She was fussy that day, so it probably wasn’t the best day to introduce her. I got a very small amount of peanut butter on my finger and swabbed her mouth. Well, that was like stirring a hornet’s nest! She immediately started to scream, rub her chin which then started to turn pink. But I really didn’t think much of it because well she was rubbing her chin; she was a crank pot all day and let’s be honest I have zero experience with food allergies and reactions. So, I decided I would give it another go the next morning and see if she reacted differently. The next morning, I took another small amount of peanut butter and swabbed her mouth, immediately she started to scream, two red racing stripes showed up on her chin, her hand where the saliva dropped was now all bubbled up and angry, and angry hives are appearing all over her body, and her lips are swollen. And all I can think is oh my God, what is happening, I must get her to her pediatrician! I panicked, snatched her up and drove quickly to her pediatrician’s office where they kindly met me and snatched her from me to do their thing and stop the reaction! One of the nurses had me stay with her and calmed me down, explained what was happening, and got me to compose myself and get into a good headspace again. It was something that needed to be done to make me pause so that I could be there 100% for my daughter.
Obviously, we didn’t need any bloodwork to confirm she is allergic to peanuts and highly allergic at that. We did, however, do a blood test and the results came back she is level 5 and anaphylactic. So, the precautionary Epi-pen Jr. we left with would be what we needed to always carry. She was originally diagnosed with PN and TN allergies and we were sent to an allergist so we could be given information and start building a relationship with them, in case we needed to see them in the future. They did want to do a food challenge on almonds because she barely registered and they wanted to make sure that it was safe and if it was to have her consuming it daily. To which we did the almond challenge and she passed. Happy moment there, one less thing to worry about! So, for the next three years of yearly blood tests, she always came back PN high, and a few TN’s were high.
Then finally in 2020 her blood results came back she was no longer allergic to any tree nuts! Talk about tears and happiness! We have not tried it out yet, I wanted two years of negative results before we try to eat some tree nuts. Plus, we were in the middle of a pandemic and the last place I want my child to be in the epi center of the virus. With her results the door opened wider to what we could now consume and do shared lines with TN’s. Things were looking up, that is for sure. And it sparked hope that maybe, just maybe she would outgrow the PN allergy too. In 2021 we tested again at her annual and the results came back once again negative for all TN’s, there was my 2 years in a row I asked for! The downside is she still tested at a level 5 for PN, and the markers aren’t promising at all that she will outgrow her allergy. This is disheartening but we also keep hope that she will outgrow her allergy and live a happy life without worry. I’ve had people ask me why I’m still holding onto hope when it probably won’t happen and my answer is always the same, miracles happen every day!
I will say we do not see an allergist as we don’t see a reason too. We can manage her food allergy by just speaking to her pediatrician who is very knowledgeable. And being that it’s a food allergy it basically just comes down to not consuming or in our case or apply anything that could be made on shared lines or same facilities. I am constantly sending out emails or calling on the phone, or doing both if I was left questioning the person whom I spoke to. Because my daughter’s allergy is so high we follow the no shared lines or facilities advice. It took a very long time to find certain products or companies who are allergen friendly. You would not believe how many things peanuts are in or are made on the same lines. And to be honest it is not just food it is also in HBA products and hygiene products. I felt as if it was a lonely, dark and desolate road we were on. And still today 8 years of managing this allergy it still feels that way. I think what makes it worse is when people just don’t understand or should I say believe how serious it is. I’ve heard people state it’s all in their head, nothing is wrong, or it isn’t that bad. So, we have learned who to stay away from those types of people and what we need to do in certain situations to stay safe. My daughter carries her own Epi now and she knows how to administer if she ever needs to.
I must give a lot of credit to becoming more open to doing things, trying things and just living in the world to my partner. She has been a voice for my daughter to help me see past my fears. She has helped my daughter have a lot of firsts in her life, and I can’t guarantee she would have had all those experiences if it was still just us. She has helped me work through my anxiety when it comes, and she absolutely keeps me grounded as we are experiencing things for the first few times. It is so important to have a great support system in life and we have such a wonderful one with my partner, my parents, brother, sister and friends who all understand my daughter’s allergy, understand how important it is to keep her safe and always have an eye out and ask questions. They all understand how important it is for her to have as close to a “normal” life as she can have. And I think they understand my anxiety, they will never fully understand it unless they live it, but I appreciate all of them so much.
I have been talking to my partner about starting therapy. I know umm, she said the T word! Yes, yes I did and I will say it a lot more too. Carrying around all this anxiety and stress is not healthy. And always unloading it on the people you love isn’t good either, even they need a break! Talking to a therapist is a good way to help us, the parents gain more coping strategies. It can also help us to pass those skills onto our allergy children. Think of the anxiety we have gets passed to the already anxiety ridden child. Not cool, we must do something as parents to not only help our children but also help ourselves. After all, in order to be the best parents we can be, we need to be in a good mental health place. It is a lot of stress to carry around worrying about our children’s safety all the time, so taking time out of life to sit and speak to a licensed therapist is ok. I’m looking forward to starting to be honest!
There are so many new tests and therapies out for people with food allergies, it is a good time to have them instead of a decade or two ago where it would’ve been a pat on the back and good luck! We are in a time with allergen friendly companies, better component testing that breaks it down, OIT therapies and new shot therapy (I need to research this one, I only saw it last week and haven’t really investigated it). I hope one day if my daughter doesn’t outgrow this PN allergy that she can get into OIT therapy and one day be able to eat a peanut without a reaction! I mean I think we need to start putting out in the Universe what we want instead of what scares us! Every parent has different paths they are taking with their children to keep them safe. And instead of tearing each other down, we need to support each other and build each other up. I have seen posts on social media where people are just treacherous for no reason at all. I have seen people tear down a mom who asks a question. I mean what is the point of that, aren’t we in a SUPPORT GROUP? Instead of ripping people apart go back to the saying we grew up with, “If you can’t say anything nice, don’t say anything at all”. There is no harm in just letting people do them and you just doing you. If it works for their family and you would never be comfortable with it, that is ok! We don’t have to agree on the same things, we just need to be polite and go through life without being a bully, pushing our thoughts and beliefs on people, or thinking we have a right to force people to do it our way.
I’m going to wrap this all up because I don’t really want to ramble and repeat things about the everyday struggle of an allergy parent, let’s just do the best we can, build up our fellow allergy parents, get some therapy, and most of all love our littles who have it worse than us! We literally are all in this together, and who can understand an allergy parent better than another allergy parent!!
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