Oral immunotherapy was our fix for Maddy. Our chicken soup,
if you will.
Maddy can play sports without worry! |
Often when we talk to people about Madeline’s OIT,
especially with non-food allergy folk, the discussion turns to food. Usually,
they are very excited, as are we, by the idea of this new scientific development
they have never heard about and like to hear about all the different things she
can now enjoy. Due to the particular protocol that Dr. Mayer follows, his
patients are able to eat any amount of peanuts, peanut butter or peanut products
they’d like as long as specific rules are followed if they ingest peanuts – no exercise
for 2-4 hours, no sleep for an hour, and keep that epinephrine around, “just in
case” until who-knows-when at this point. We give Maddy her peanut butter toast
or peanut M & M’s, her dose of choice, in the evening, about an hour before
bed when we don’t plan any high impact activities, and the epi-pen continues to
be a part of our routine. A small price
to pay for such a feeling of freedom and security.
Maddy, even as much as everyone says to her, “I wish the
doctor prescribed Peanut M & M’s to me,” and even as she eats them every
day to stifle that peanut allergy, still doesn’t like the taste of peanuts or peanut
butter too much, so isn’t one to choose either on her own. Due to OIT, however,
she may eat any cross-contaminated foods with no restrictions, which has opened
up a world of possibilities unknown to her before and somewhat forgotten to us!
Our world has changed, for us, tremendously, but for parents with kids without
allergies these are just simply normal activities. And somewhat mundane, I’m
sure. To us, though, it is downright exciting!
Restaurants out with friends? No worries! |
When living with food allergies, your day to day, minute to
minute checks for your allergen become so normal, that when the threat of
anaphylaxis is taken away it is an amazing relief! Not only the thrill of the
idea that anaphylaxis is gone, but the knowledge that she will live real normal
now. Not peanut allergy normal anymore… that is unreal!
Thanks to our “new” normal, Maddy can now attend a birthday
party without us contacting the parent a week in advance, without having her
own special cupcake, or her own peanut free ice cream and that has been just awesome!
And thanks to our new normal lives the fact that we can walk into any restaurant
and order off the menu without the peanut allergy proclamation makes me tear up
almost every time! Our new normal grocery trips save me time and if I dare look
at the label, she gives me the most evil eye any seven year old can give – she is
simply over it! These small things may not seem big to the average person, but
to us – HUGE!
These seemingly minor life experiences continue to allow
Maddy to be the person Maddy wants to be and should be – a confident, independent,
and now liberated little lady who continues to share her zest for life with the
her family and friends! Rather than be separated from those people, she can
build better and stronger relationships with them.
Creating better bonds - thanks to OIT! |
As an ardent reader and researcher about food allergies and an
educator as well, I am reminded often about the bigger picture, too and how
kids are affected by food allergies as they age. Maddy is just going into 3rd
grade and we have limited experience with bullying issues in general, let alone
in relation to those specific to food allergies, though we had one incident that
was scary. In first grade, Maddy was chased by a girl who repeatedly told her
that she had peanut butter for lunch and was going to get her. Maddy was
freaked, her best friend stepped in, helped her out and by the next day we had
the situation well under control. Aside from that one incident, in these
younger grades, Maddy had almost always been lifted up, cared for, and
protected by her classmates. As a mom and a teacher, I know that times would
change as the ages of the kids changed.
A friend recently
sent an article
to me concerning bullying related incidents and food allergies - it’s NOT a
pretty picture. The group FARE, the
largest food allergy research group, has been trying to bring some public
attention this issue, publishing a public service announcement
about food allergy bullying. OIT has at least allowed us to take this dynamic
out of the picture – there are plenty of reasons for kids to tease each other,
pressure one another, and to, heaven forbid, even bully each other – OIT has
taken that smoking gun away from the bullies who would try with Maddy from now
on! Maddy is over it; we are over it! We aren’t sweating the small stuff
anymore and it is allowing us to not fret over the big stuff later!
In fact, oral immunotherapy has allowed Maddy to enjoy life so much she doesn’t have to sweat the small stuff anymore, she is continuing to build confidence in ways that I don’t think she would have been able to if she hadn’t had OIT, and she is enjoying things she for sure would not have been able to before. Rather, she is loving it - every last bit of it!
Sara I have just come across your blog and this is the first post I have read. I will be checking out the rest! Congrats to Maddy and your family. What an amazing miracle you have received. I pray that it will continue on this was for the rest of Maddy's life. As the mom of a four yr old with PN/TN/Egg allergies, plus eczema and asthma, I read each sentence while holding my breath. Your journey must have been scary, but what an outcome! I am not sure I could be as brave as to go thru OIT with my William. Time will tell, I guess. I look forward to more happy endings :-)
ReplyDeleteGod bless, Suz
Thank you, Mama! I believe you have it in you if/when you choose. No matter which route we choose, though in food allergies, each is a path that takes bravery, tenacity, and much love and a lot of faith - in ourselves and in others. Hold strong! You're doing great!
ReplyDelete