Sunday, March 2, 2014

Back in Time - Food Allergy Reaction Video

I recently found a 35 second video of my son having a mild allergic reaction on the day before his first birthday. I find the video hard to watch because it's a painful reminder of what we went through during the first 21 months of his life.  This wasn't just a one time occurrence, he reacted this way frequently, morning, noon, and night, to foods he ate and to my breast milk (food I ate).  Back then I just couldn't understand how food could cause him so much pain and discomfort.  At the time of this video we were both avoiding wheat, dairy, nuts, soy, and egg but the reactions continued.  

You can see in the video that he's in obvious discomfort; screaming, scratching at his head, and rubbing his face on my shirt.  His mouth and chin are covered in hives and he has scrapes on his face from his nails.  The poor kid was basically screaming for help, he couldn't talk, he couldn't tell me how it felt and I was doing everything I possibly could to help him, but at the time nothing was working.

Allergic Reaction from Elizabeth DiBurro on Vimeo.

I recorded this video to show to his doctors because I wanted them to have a full understanding of what I meant by "discomfort".  I wanted to be taken seriously and I wanted answers.  

Why am I sharing it?

I know we're not alone.  I know that there are parents out there that can relate to this video.  I know there are moms out there that are going through something similar with their babies and are at a loss of what to do.  I know that when we were going though this time, I went to the internet to do my own research and found it very helpful.  I'm also sharing this video because maybe it's a way for people who do not understand allergies to relate to those who do.  Maybe they will remember this little boy and show compassion and empathy towards the next person they meet who suffers from or parents a child with food allergies.  

Do you want to know another reason why I am sharing it?

Because it shows how far we've come.  My son is now six years old and although he still has food allergies, he no longer has reactions like in the video.  He no longer wakes up in the night screaming and scratching his head.  He no longer suffers from eczema.  The days of him screeching in obvious discomfort and scratching at his body until he bleeds are a thing from the past.  

This video is not just about what an allergic reaction can look like, it's about giving people hope that it can get better.  

If I could could go back in time and talk with that mom, 

what would I say?

First, I would give her a huge hug.  I would tell her: be patient, you will get answers.  You will find a way to make his life comfortable.  He will not continue to have these reactions.  You will find a new "normal" where everyone in the family is genuinely happy.  All of this won't be given to you, you have to make it happen.  You are much stronger than you think you are and this difficult part of your life will someday only be a memory.  I promise you that it will get better.

I would also like to tell her that education is the power but do not believe everything you read.  The internet is a double-edged sword.  You can find an article, a post, a video, a tweet that supports any argument but that doesn't make it fact.  Base your decisions about raising a child with food allergies on facts, not fear, and use your best judgement.  Every family that lives with food allergies has different experiences, different allergens, and different opinions.  Respect their choices and know that we all can do things differently, without judgement, based on what works best for us.  Also, it is okay to change your mind, your opinion, and your ways if something doesn't work for you or if your education on the matter differs.  Don't allow your ego or your fear to stop you from making changes that will better your child's life.

There's one last thing I'd like to tell that mom...You will come across many people that just don't understand the severity of food allergies. They may say or do things that upset you, but try to remember that they just don't understand...they don't do it to anger you or harm you or your child...they do it because no one can truly understand the severity of life with food allergies until it affects you or your own child.  It's not that they don't want to understand.  It is just impossible for them.

The teacher who has multiple students with food allergies cannot "get it".

The doctor who sees thousands of patients with food allergies cannot "get it".

The grandparent who watches their child struggle while parenting a child with food allergies cannot "get it".

The best friend who spends a lot of time with the family that struggles with food allergies cannot "get it".

All they can do is guess what it is like...and those thoughts are only brief.  They do not live every day with the worries and day-to-day tasks of living with food allergies. Therefore, they cannot and will not ever "get it". Do not hold that against them.  Do not try to convince them otherwise.  Educate them without anger, without scare tactics, without exaggeration, without bitterness, without resentment, and without hostility.  Give credit to those who try to understand because that is all they can do...

Most importantly,

Be understanding, be patient, be respectful, be determined, 

become educated, trust your instincts, and always be kind.


.-Elizabeth DiBurro
EBL Food Allergies

If you could go back in time, what would you say?  I asked this very question on my Facebook page and received some of the following responses.

Nicole Walker - Always trust your gut.
Joanne Knefel -  That I would need a thick skin. And that no matter what her safety is my priority and go with my gut instinct.
Nutri-Mom / Allergy Phoods -  It is something that you think will make you weaker but, in fact, it makes you stronger.
Heather Mayberry-Black -  There is no food allergy manual on how to handle this illness. You take it day by day and if something happens, don't beat yourself up but move on. I heard someone say once "food allergies has a steep learning curve with no room for error".
Susan Shaffner Tischler -  I would tell myself to be careful with my reactions to my sons' allergic reactions. Because now they are older they are panic stricken if anything goes wrong. This illness creates a lot of anxiety and it affects so many aspects of our lives. I would like to try to minimize the anxiety if at all possible.
Shagufta Maskatiya-Terziev -  Keep a food journal starting from when he started eating solids and no matter what, do not listen to anyone but my gut. I can't tell you how many times I've almost put my son in type 1 hypersensitivity by listening to an 'older, wiser' female in the family. Once I learned to accept the cards I was dealt, we are conquering each day with new hope and just acceptance. That and to never allow an idiot ignorant family member or their idiotic friends to call my son a sick boy. Never again.
Riana Chisolm Jasperson -  That it's going to be ok. You can do this!
Mikhaela Reid -  I would say make sure to have some really good support (family, friends, and even professional mental health counseling), because it's hard to be a good parent when your own anxiety and terror around your child's food allergies is paralyzing you. I was terrified, anxious and hardly sleeping for many months after my daughter's first (and so far, last) anaphylactic reaction, and while I still have many hard days, getting some good counseling helped me a lot. 
The Allergic Kid -  Honestly, I wouldn't. I thought I could manage my son's food allergies because of our family's long history of them, but it has gotten harder, not easier.
Mikhaela Reid's response to The Allergic Kid - I think that's the challenge of the whole "go back in time" framework—there may be some days or months when I feel like "OK, I've got this food allergy thing ALL figured out" but I agree with The Allergic Kid ... as my daughter ages and get more independent and there are more and more situations that come up, it gets harder. Sure we can keep her safe at home... but what about pre-K next year? Birthday parties are always a terror fest. Playdates at other kids houses? I can't imagine things getting EASIER...  I also think there can be a danger IN relaxing and feeling like you have everything figured out, because constant vigilance is so important. Sure I'm horrified when I meet parents who never remember their kids' Epi-Pens, but there have been a few times when we got a block or two outside the apartment and had to run back when we remembered. Sure there are times when we've negotiated birthday parties safely and had fun, but there have also been close calls. Sure, we used to go to restaurants and we had a whole procedure to try to stay safe but it just wasn't worth it (and now that she's older, I doubt restaurants would be OK with us bringing in her own meal)... Oh, I think that's the other piece of advice I would give that not all allergy parents would agree with: if your kid has severe allergies (especially multiple ones): forget restaurants and bakeries. Just give that up. It's possible to live a super happy and delicious life without them. When my daughter is all grown up and making her own decisions she may choose whether she wants to negotiate safety with food prepared in some restaurants, but I don't comfortable subjecting her to that level of risk given her allergies to dairy, eggs, nuts, sesame, mustard and possibly a few other spices.
Charl Rae Segura Cobb -  Trust you instincts and document your child's reactions to potential allergens. Seek out a physician/allergist who listens to you and don't waste time trying to help your child "just survive until he is old enough to be tested".

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  1. Great post and thanks for sharing my comments—I SO relate and I think it's really important for people to understand what's it's like. My 3-year-old hasn't had a severe anaphylactic reaction in two years but we've had quite a few of these milder ones with crying and hives and misery, some from previously trusted foods too.

    By the way, could you please link my name to my blog? I JUST (as in last night) finished setting up a blog about my family's food allergy journey (Safe & Scrumptious), and would love to get some readers. Thanks so much!

  2. Impressive! I have a video of my son's anafilatic reaction to his first infant cereal with only 6 months and I cannot look at it! p

    1. I have a hard time watching THIS video...never mind an anaphylactic reaction... I'd be a wreck. I don't blame you one bit for not watching it.

  3. Thank you so much for sharing! You are definitely right that you are not alone!

    This post brought tears to my eyes as I remembered the first couple years of my own son's life... sleepless nights pacing the floor with a baby screaming in pain that you can't fix or prevent, the many comments to doctors, family members, and friends that "something is wrong" until they finally start to believe you enough to help you find real solutions.. then, once we did start figuring it out, the annoyed looks from babysitters when we gave them his long list of food requirements and the judgmental questions like "so which of these foods pose a REAL risk...? ". They really don't understand just how severe even the non-life threatening responses are... it's not your typical tummy ache... and it's not at all the same for mom as being up multiple times a night with a normal, healthy, newborn. Not the same at all.


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