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| Greeting her upon arrival. |
Recently on a Facebook thread, a question was posted on the
wall of one of the allergy discussion groups I frequent. The question is
loaded. It is subjective. And in my opinion it can only be answered in one way,
yet it had so many responses. The question: Is it worth it?
The woman wanted to know if it was worth it to try peanut
desensitization for her child; if it was worth the possibility of it not
working. She wanted to know if her child’s “numbers” matched any of those that
could be problematic or if her child could even be eligible for Oral Immunotherapy. Would it be worth the trouble, the consultation, even
attempting.
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| Waiting to eat that 1st peanut. |
Now, on-line I don’t chime in on a large number of things.
It seems that much has been said, argued about, or is simply not worth the time
it takes to type. Often, I don’t feel I have enough information on a subject, I
haven’t done enough research of my own to put in writing my personal opinion - I don't want to look like "that idiot," you know who I'm talking about! I’m not
saying that I never add my two-cents, or have an opinion; I certainly do. If you and I were sitting
next to each other, you’d certainly get a good eye roll out of me. And if I’m
really passionate about a topic, you might never get me to shut up. It just
needs to be something that lights my fire when it comes to a Facebook thread or
other internet chat.
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| The first face. Yuck! |
Her questions caught my immediate attention though,
because I remember those questions running through my head. I was there once,
hemming & hawing, waiting for an answer to come to me. Expecting one person
to tell me the right thing to do; the best thing to do. Hoping for someone,
something to tell me the best answer for us, for our family – telling family
members that this is what our decision was, just waiting for them to
disagree and give us a better option. Eventually our right answer came to us, for
us. Just like it will for her. After 35 – 50 people chime in on that particular
thread, after she researches hours upon hours on the internet, chats and chats on
different sites, talks to every person she can about the issue, discusses it with her husband,
her family members, her doctor, gets a first opinion, a second. Finally she
will rest upon a decision. Finally.
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| Getting the taste out! |
I came upon this question, 'is it worth it?' right around the time
Maddy ate her first peanut – a day we will never forget. Up until this point in
her life Maddy had not really tasted anything resembling a peanut even. She was
only two years old when we’d learned of her allergy. She’d never been one to
try the peanut butter alternatives; she’d always thought they too closely
resembled PB for her tastes - that texture & taste was alien to her. Desensitization
treatment to this point had consisted of increasing amounts of peanut ‘dust’ in
a fruit juice concentrate. And then as the flour became too much to mix into juice, we
mixed the flour into applesauce, pudding, whipped cream, or even ice cream. It eventually
becoming more & more difficult to hide the burnt peanut flavored flour as it increased
in quantity. We were finally to that first peanut with high hopes of her loving it!
That wasn’t quite the way it happened. Maddy’s entourage
followed her in that day - bulbs flashing, videos rolling, and cheering her
forward. Maddy hid her nerves with smiles, jokes, and a wall of confidence like no
other seven – year old I have ever seen. Nurse Amy had Maddy’s first peanut
envelope and a giant smile waiting for her the moment she walked in the door. Vitals were
checked, cameras were loaded, and Maddy’s shaking hand was out ready. The first
bite was taken, though quickly and with a confident ease and then came the faces. Oh, the faces. She did not
like those little peanuts, maybe as much as they did not like her little body!
This time, though, they each accepted each other. Maddy made faces, ate the
peanuts, and the peanuts accepted that and did not react in her system. We had
balance!
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| Always such a good attitude, though! |
So she ate them, and she ate them. And she kept eating them
all week long. She made terrible faces when she did it, but she did it like a
champ. She had no reaction to them because her body was and is doing exactly what it is
supposed to - becoming used to this foreign substance that it once needed to
attack. Desensitizing. Amazing!
A few recent pieces have come out regarding desensitization
that are important in the allergy world, especially to allergy mommies &
daddies. One study, in relation to the effect OIT has on a peanut allergy
patients’ quality of life after the completion of a desensitization program.
The conclusion? And I quote, “peanut oral immunotherapy significantly improves
food-specific quality of life.” Duh! The children (ranged in ages 5 – 18) found
improvement in a number of areas - allergen avoidance, dietary restriction,
risk of accidental exposure, emotional impact, food-related anxiety, and social
and dietary limitations (see the abstract here) . More recently, in my mailbox, was the “Food Allergy
News” bulletin from the Food Allergy & Anaphylaxis Network that highlighted
an interview with the American Academy of Allergy, Asthma & Immunology
president, Wesley Burks, M.D. - blah, blah, blah… right? His point, though, was
that, along with two other possible treatments coming up, with Oral
Immunotherapy, “we know that the threshold for these children will go up during
treatment and that we can achieve a desensitization effect in most patients.” . So, the real question, to me should really be, "why not?" All
signs point to yes, It is worth it! Yes, yes, yes and yes!
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| Such a smart little girl! |
I pointed out to Maddy, again, my amazement of her - that
she was taking this on, eating peanuts when peanuts were her poison and that
she obviously had distaste for them. Maddy told me, “even if I don’t like the
peanuts, I’m going to eat them. They’re just my medicine.” Have I mentioned to you that she is just seven? Such a smarty!
Each morning and night – when she is eating her dose, I have
been amazed at her attitude and gumption. She has been nothing short of
incredible. At this age, to understand, be challenged even, to complete
this program no matter how bad it tastes! No matter how hard it is to wrap her
mind around the fact that she is eating a peanut, poison. Because the reality
is, it is worth it, in the long run, it is absolutely better for her to
know she won’t accidentally ingest something at a birthday party, a Christmas
party, or something as small as a bite of a cookie. Even if she has to eat peanuts every day for the rest of her
life, she knows her safety and her life are not just important, they are everything to us. Her life & livelihood are worth it!
