B officially began her treatment for peanut desensitization
(OIT) on Monday 7/15. I had a mix of
emotions leading up to her appointment.
I was terrified, excited, apprehensive, stressed, and wondering if we
had made the right decision for B.
While desensitization therapy is not really a new concept, doing it with
peanuts is. I just needed to remind
myself that I had already done the research, picked the best doctor, and knew
that this treatment would save my daughter’s life should she accidentally
consume trace amounts of peanut. It was
really a no brainer. The more severe the
peanut allergy, the greater the need to treat it. I tried to put my nervousness aside, and give
it to God.
The 6 hour drive to NC was uneventful. B knew why we were headed there. I didn’t want to use any suggestive language
with her, so I didn’t ask her if she was scared or nervous, but I could tell
that she was a bit apprehensive. I couldn’t blame her. She knew that we were going to NC where a
doctor was going to feed her “invisible peanuts.” She’s a smart girl, and she undoubtedly was
recalling all the warnings and conversations we had about how even the smallest
amount of peanut could send her into anaphylaxis. She had a right to be
apprehensive. We had spent the better
part of her entire life avoiding the very food we were now driving to NC for
her to consume. I could understand her
apprehension, I was feeling it too.
The day before B’s appointment, I had given her a small can
of prune juice to drink. It had been a
few days since she had passed a BM. I
didn’t want her to go into OIT with constipation pains and for those pains to
be mistaken as tummy pain from the dose of peanut. I wanted to make sure
everything would go smoothly and without any confusion.
The first day of B’s therapy, we checked in and waited for
our turn to start. After chatting with
the doc, it didn’t take long for the nurse to come in with first dose of
“invisible peanut”. It was indeed
invisible, or at least mixed into the applesauce so well that I couldn’t detect
it. Dr. N started with .1 mg of peanut flour.
B did fine, and so the next dose came 20 minutes later. The dose was .5 mg, and still invisible to
the naked eye. Soon after this dose, B started to complain that her tummy was
hurting. I figured the prune juice was
doing its thing, and took her to the restroom. She went, and said she felt much
better. After each of the next few doses,
she would complain of tummy pain. Each
time I took her to the bathroom, and each time she would have a BM. I was starting to get nervous about B’s tummy
pain because B was really crying about it.
The nurse suspected that it was the prune juice causing the pain but the
Dr. came to check on her anyway. He was sure that the tummy pain was unrelated
to the dose of peanuts. I wasn’t so sure.
By the 5th dose, Brooke was pretty worked up and
saying that her throat hurt. I was in a panic on the inside… ready to pull out
the Benadryl and Epi pen... but trying
to stay calm, cool and collected on the outside for B’s sake. I asked the nurse to get the Dr. and when he
came to check her out he maintained that she was okay. He still didn't think the peanut dose had
anything to do with her tummy pain. I
explained that B had taken prune juice for her constipation several times, and
had never had any pain associated with it.
She had never cried like she was crying now. I wasn’t sure if the throat pain had more to
do with the fact that B was working herself up over the tummy pain, or if it
was related to the peanut dose. Dr. N
wasn’t concerned about it, because her breathing was fine and there were no other
symptoms.
By the 6th and final dose (6 mgs), B was feeling
better. She had passed gas several times, and was no longer complaining of any
pain anywhere. We were instructed to
return the next day to repeat the final dose as a stand alone dose.
The next day, we returned to the office for the stand alone
dose. B was still a little apprehensive. After consuming it, she said that her tongue
was stinging. Again, inner
panicking. I notified the nurse, who
notified the Dr, who was not concerned about it. I gave her some water and used some
distraction techniques and she was fine.
She was observed for almost 3 hours before we were released and sent home
with our 14 day supply of 6mgs peanut flour dosing cups.
At home, I had to sleep with B the first night. I wasn’t
confident enough to let her go unsupervised all night long. In the middle of the night she had a brief coughing
fit. It was nothing really, but I was
glad I was there with her. This morning,
I gave B her first “at home” dose. I was nervous inside, but trying to act nonchalant
about it... like eating peanut flour was something she’d been able to do all
along. She was still a little hesitant
to eat it, but she did fine. She had no
complaints, until 2 hours later when we were on the way to the library. She
said her throat felt tight. I had more
inner panicking and hoped I wouldn’t have to stab her with the epi pen and
leave the library in an ambulance.
Luckily nothing ever came of it.
I wasn’t sure what to think.
I didn’t know if she was just nervous because she knows she is consuming
peanuts, and the nervousness is leading to a “lump in the throat” feeling… or
if the peanut dose is actually affecting her in an anaphylactic sort of
way. I had a brilliant idea to try to
figure it out. I used her empty dose cup from this morning’s dose and pretended
to give her another dose. There wasn’t
any peanut in it, just applesauce. We
went through the whole process like normal.
I scraped the edges of the cup to make sure I was getting every last
drop, then had her lick every last drop off of the spoon. She is now in her “pretend 2 hour observation
period.” I guess only time will tell if
the symptoms she feels is really from peanut or just from nervousness.
B will be at 6mgs for the next 12 days, then back to NC we
go. The next visit will put her at 12mgs. Again, I am nervous, excited,
stressed but most of all hopeful. The
more her body can tolerate, the better protected she will be against accidental
consumption. This is definitely a life changing experience. A wonderfully, terrifying, fascinating, life
changing experience.
