Right off the bat that title just shrieks of bad parenting. Who would want their child to fail any test at all, let alone one that could erase a life threatening food allergy from their child’s life? Well, me in this case..
My five year old son William was diagnosed with food allergies when he was just eight months old. His allergies at the time were to dairy, eggs, peanuts and tree nuts. We found out after William received the H1N1 flu shot, which had egg in it. His tiny little body was covered in hives! William already suffered from severe eczema so you can image how ravaged the hives made his skin look and feel. He would scratch until he bled. It was heartbreaking to see.
William’s eczema on a good day 🙁
The first thing to change was breastfeeding. No more mother’s milk for my son. This lead to trying a variety of formulas, several of which he was allergic to. Despite the horror stories we had read William did not go into anaphylaxis. The scary part was we were told there was no way to know when a reaction could become anaphylactic. This meant that with each reaction we were holding our breath, waiting.
Shopping for dairy, egg, peanut and tree nut free food was a lesson in patience. Even now, over four years later, not every grocery store carries soy yogurt or rice based cheese slices. Our on-the-go snacks, like Cheerios and Gold Fish crackers became a thing of the past. It was also a test on our wallets because as is with most “specialty” items, food allergen free foods are more expensive than their counterparts. They don’t always taste very good either, but fortunately, William was young enough not to know the difference.
Taking an Epi-pen everywhere we went became as second nature as carrying my purse. At almost one hundred dollars a pop, Doug and I are very lucky to have coverage for them. This means we can have several at a time, which is a must. Many people have died even after two or three Epi-pens have been injected. Even though there is safety in numbers, there is still no guarantee.
The day William passed his oral challenge for dairy was pretty nerve racking. Over the course of several hours our allergist gave increasingly larger drops of milk to William and hallelujah, he didn’t break out into hives or start coughing. He didn’t throw up or have trouble breathing. He was fine. William had passed his food challenge for dairy. We were ordered by the allergist to give William dairy in some form every day from then on to keep his allergy from returning. That seemed strange to me, but we did as we were told. Four days later William was rushed to the hospital with his first asthma attack.
The doctor said the asthma was not related to the dairy allergy, but asthma, like eczema, is linked to food allergies. For many kids, if they have one, they have the other two, with varying degrees of severity. Much like an allergic reaction though, you will never know just how bad an outbreak or attack will be until it actually happens. William’s first attack landed him in the hospital for several days. He was asleep when it happened and he did not wake up complaining. We just knew from watching his breathing that something was not right. His blood oxygen levels were extremely low when he was admitted. Two and a half years later it still makes me upset to think how close we came to losing him.
William on the mend during his first hospital stay
So, I’m guessing by now you are thinking that I must be totally off my rocker to want William to fail his food challenge. A part of me knows that is an illogical way to feel, but the part that has watched hives pop out on his skin for no apparent reason feels differently. The overprotective mom in me that re-lives our first ambulance ride to the hospital in my nightmares doesn’t think I am crazy. The warrior mama in me that harangued our school about Epi-pen access and allergy awareness doesn’t think I am overreacting at all.
The reason I want this food challenge to fail is simple really. The way things stand now I know that William can not eat eggs. William knows he can not eat eggs or they will make him very sick. His dad, his sister, his teacher, his daycare provider, they all know that eggs can make William sick. Awareness means these people will be vigilant in keeping eggs away from my son. Even if he does pass the food challenge there is no guarantee the allergy won’t come back. The doctor has confirmed that he could have a delayed reaction several hours later or that the allergy could resurface weeks or months later. What if those who were once so vigilant now let their guard down, including me? What if William has a reaction to eggs, but because he is “cured” no one pays any attention to it? While this is a worse case scenario it is still possible. The what ifs are driving me crazy!
Isn’t the devil we know better than the devil we don’t?
FT&PD
Suz
I can totally relate to the “what if’s” as I have a daughter with a life threatening medical condition. She’s deemed as stable now but that could change in a moment and it terrifies me that we’ll let our guard down. Isn’t parenting fun?! 🙂
LOL so true Sarah. Why don’t they tell us this stuff before we sign up for parenthood??
Wow, this must be so difficult for you and of course, for William! I hope that as he grows, that he gets stronger and healthier!
Thank you so much Nena, I appreciate that 🙂
I’m allergic to gluten: if I get “poisoned” it takes 23 hours before it hits; or rather, before the symptoms that I experience on a sensory level hit: the damage has already been done. Some people who are allergic to gluten never get any secondary symptoms and thus never know about it until they finally die. It used to be a mysterious thing called “The Wasting Disease”.
Yes Jud that is so very true! I know a young lady whose Celiac diagnosis took over three years to be made and in the meantime she was literally wasting away. It saddens me to this day to see her hesitate with every bite. I fear for her this will never get easier. And to think 23 hours! This is why I fear the delayed reaction. So many think if the reaction doesn’t happen right away you are good to go, but nope, not even close sadly 🙁
God bless ur family and especially William! What a handsome cutie pie! Great job momma!
Oh thank you so much Vanessa, I appreciate it <3
Suzanne, I have watched your family keeping an eye out for everything that goes near William’s mouth and realize that is takes a lot out of you. Yes, it is difficult being a parent but you have an added responsible, remember God gives you only that which you can handle. Keep up the prayers and William will always have someone watching over him. Love you all and keep up the good job!
Thank you Mom, that meant a lot and I appreciate it <3 We love you too!
See we were told that Eczema had nothing to do with food allergies. So many conflicting stories from doctors! I think it varies!
I do however, strongly believe that food allergies are on their own not linked to skin conditions (except for hives etc which would be a reaction.) I believe that someone can have allergies AND eczema but not eczema because of food allergies.
My Daughter has eczema badly and we were told several times that it had everything to do with milk allergies and lactose intolerance as well as different food intolerance. It didn’t. She is NOT allergic to anything nor does she have any other ailments.
However, her skin has reactions when in direct contact with irritants such as grass etc.
She is now two and looks as though she never had eczema and we have not cut anything out of her diet, just taken better care of her skin.
On another note, you are not a bad mother for wanting him to fail his food tests, raising awareness and ensuring that everyone knows your child has allergies that could be potentially life threatening is no joke!
Your son is adorable! You are one tough momma and he’s a strong little guy!
There really are so many conflicting stories out there and it just makes it harder to take care of our kids. I do know lots of people who have eczema that do not have food allergies although asthma still seems to be prevalent. I guess it is luck of the draw. I pray your little one does not get food allergies, ever! I am so happy her eczema is gone. That is so troublesome just on it’s own. William still gets the eczema and this winter it was far worse 🙁
Thank you for your support and kind words. I appreciate it 🙂
Oh gee! Food allergies are scary. We have a niece who carries TWO epipens and her sister has to carry one for back up even if she doesn’t have allergies. The back up is for her sister who is severely allergic to ALL nuts, certain fruits and veg, dairy, soy, shellfish, etc.
You’re doing such an awesome job being so diligent! Keep us posted on how things go!
That is exactly the type of thing many people don’t understand Christine, that one Epi is often not enough. It made me so mad when the a teacher at my son’s school flippantly said that one was “more then enough” Are you kidding me?! Thank goodness your neice has a great sister to have her back and parents who are smart enough to have that many Epi’s around. Bless their hearts. Thank you for your kind words Christine, I appreciate. We will know soon how William does…
I can just imagine how hard this is for you and your husband. To not be able to control something like this and help your son. Very scary. I think I would have mixed emotions too
The control is the key here Kim. You feel so helpless without it 🙁
My heart goes out to you and William. Food Allergies are scary I know so many people who are dealing with this. So hard to feel confident. ((HUGS))
Thank you Tammy, yes that is the key. It is very hard to have faith..
I cannot imagine my child being allergic to daily food like milk, dairy, nuts. My son is allergic to oranges, breaks out in hives everywhere even in his mouth. My g/f’s son however was deathly allergic to milk, and she came close to many times because of teachers, day care providers dropping the ball. I’m so sorry you have had to deal with this and for your son who should be able to grow up and eat. So good all the precautions you take though mama 🙂 Let us know how it goes.
Thank you Jodi, I appreciate the kind words and support. Wow, hives in his mouth? That would be just awful for anyone, let alone a child 🙁
When I was in high school, I dated a girl who had severe asthma, and had severe allergies to chocolate and nuts. This was back in the early 90s. At that time, out of a high school of 900+, she was the only one. Now, food allergies are much more widespread. Very concerning.
Wow, that must have been quite the relationship Craig! It is a huge responsibility for anyone, but when you are the only person in your school? What a shame. Thanks for reading and stopping in, I appreciate it 🙂
my boys both have eczema, and my oldest has asthma but it is NOT severe. We have never had to rush for medical attention. His is more due to colds and exercise, so we have been able to keep it fairly under control …. those pictures just break my heart
Any form of eczema is horrible, especially for kids Ashley 🙁 Thanks for stopping in!
It’s so challenging and stressful. I have two daughters and they both have eczema. I’ve been uttering their diet to help with the problem. It’s difficult and stressful and I’m sure your situation is even more challenging. Stay strong.
Thank you Maria. Eczema is just as challenging sadly. When you can not control their itch it is heartbreaking. Good luck!
This must be so difficult for you and William,i hope everything gets figured out !
Thank you!
🙂