It’s been a while since I’ve blogged a good, long post; there’s one coming up though so fetch yourself a cup of tea, put your feet up, and get comfy…
I posted in early February that the Boy has been invited to take part in a research study.
It’s a two-fold study.
The first part is to see if peanut allergy sufferers can be fed increasing amounts of boiled peanuts (boiling changes the protein, making the allergy sufferer (hopefully) more tolerant of the proteins) which will hopefully increase their tolerance towards actual peanuts. Just a couple of hopefullys there… There’s no expectation of being able to eat peanuts at the end of it, but a possibility that if we get onto the trial and are able to follow it through successfully, we might be able to ignore “may contain” labels and panic a lot less when we eat out.
The second part is to study perceived quality of life in allergy sufferers and their families. I know I feel that our quality of life is affected by The Boy’s allergy, but I also realise that it is more down to perception of loss of quality (i.e. – worrying about eating out, buying food we haven’t bought before) than actual loss of quality (i.e. suffering an anaphylactic reaction – which hasn’t happened since he was nearly 2).
The trial went/will go as follows:
Appointment one – extremely thorough medical history and more skin prick tests than either of us were happy with. Also, he had to eat 7 sandwiches (4 eighths, 2 quarters and one half) with Wowbutter in to simulate what would happen in appointments 2/3 and make sure he won’t react.
He had to eat all the wowbutter to prove he could tolerate that quantity. It tastes sort of peanut butterish so they can hide the peanut flour in it on either appointment 2 or 3.
Appointments two and three – get inside of both elbows made numb so the research fellows can put a cannula in, eat 7 wowbutter sandwiches (4 eighths, 2 quarters and one half at half hourly intervals) have temperature taken twice (beginning and end), bloods taken three times (through the cannula; beginning, middle, end) and blood pressure/sats done eight times (at the beginning and after every sandwich). Wait an hour, eat lunch, wait an hour, go home. It’s a double blind trial which means that on one of the days he will just have wowbutter in the sandwiches, on the other day it will be wowbutter with increasing amounts of peanut flour. Neither the Boy, me, or the ladies (research fellows) looking after us will know… Only the head of the trial (P) will know. Yes, I’m not really thrilled about that…
Today was appointment number two.
The team we’re with are lovely, and spent a lot of time making sure the Boy was ok with what would happen during the day, and was happy to talk to them about any concerns he had. His biggest worry (much like mine, to be fair) was dying. Understandably. The two ladies with us, S and N, were able to put him at ease and explain that it was a controlled environment and not only would they would be keeping a very very close eye on him, but that they had all the medicines to deal with any eventualities (I didn’t mention that I had issues with the fact that it wasn’t me controlling the environment). They also made it very clear to him that he had to report any itch/sniffle/wheeze/funny feeling as they didn’t know if it was peanuts today or not.
The first thing they did was ask me to take a photo of him. That way if he was itchy or feeling peaky, they could look at the photo and check whether any bits of his face were starting to swell up.
You always get your best shots at unlikely times!
Next was the cream to numb his elbow crooks. They did both elbows to be on the safe side.
A quick break for some lego
then it was time to check the local anasthetic had worked…
Apparently, having blood taken when you’re an eight year old Boy is quite interesting.
He really wasn’t thrilled with the sandwiches, but ate them all anyway.
He demanded I take a picture of his cannula before it was removed.
And then it was lunchtime (and yes, I let him have rubbish food for lunch today)!
He didn’t react to the sandwiches he had today, which means one of two things. Either it’s peanuts next appointment, or he’s not allergic any more. I’d love to think it’s the second option, but I daren’t think that. I feel I need to be prepared for the next appointment to be what I expected this one to be.
I suspect you’ll be getting another long post in a weeks time…