Third Time Lucky

Today was the Boy’s final appointment to see if he was eligible for the Boiled Oral Peanut Immunotherapy (BOPI) trial at his allergy clinic.  Previous posts are here and also here.

It was, as I predicted to myself (without admitting it publicly), fairly stressful.

We have to take a photo at the beginning of each day so that the Doctors can spot any slight facial swellings before they get too significant.  Standard procedure for my smiley boy is that we take two – one for fun, and one serious one for them to compare to spot the difference over the course of the day.

I’m only showing the smiley one.

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Then was the appearance of the quarter of a boiled peanut that he had to be able to tolerate to get onto the trial.  I love that he looked like a Roman at this point – all curly hair and lounging while he was offered his peeled grape (boiled peanut).

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And in it went.

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It turned out that a quarter of a boiled peanut was reasonably tolerable.  He had an itchy mouth and throat, and a bit of a sore tummy, but nothing really to write home about (oh, apart from the fact that it was gross, apparently).

About an hour later, he was fed the other three quarters of the boiled peanut. This produced more itchiness and a definite increase in tummy ache, but still manageable at this point.

The real stress point for me, and the Boy, was the two boiled peanuts they fed him an hour later.

These produced a lot of itchiness in his mouth and throat, and a very bad tummy ache (7 on a scale of 1 to 10 and he’s not gone above 5 so far).

Far worse though, and reminiscent of his first attack (aged 22 months) was when he went floppy.  He sagged onto me, and when the Doctors asked him a few questions he was unable to answer accurately or with more than one or two words.

The positive part to this is that he was hooked up to monitors so we knew that his blood pressure and breathing (both indicators for anaphylaxis) were ok.

Had I been at home with this happening, I would have used his epipen, but on the monitors I was we were able to keep an eye on him and let it run its course (as I read this, I am amazed at how calmly I am able to re-tell this part – at the time I was terrified).

After about 10 minutes he went to sleep.

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Not for long though.  He woke up shortly afterwards and was still sleepy, disorientated and incredibly grumpy (not surprisingly).

After half an hour of floppy (plenty long enough for me) he announced that he needed the bathroom.  I only recount this bit in detail because I’m so amazed at what happened.  He walked (just, with my support) to the bathroom, couldn’t decide whether he needed to sit or stand and then asked if he could have a bucket.  He was comprehensively sick, then had a wee, washed his hands and announced that he was quite hungry actually!

And that was pretty much that.  There was a bit more internal itching and a sore throat (throwing up introduces the peanut back into the throat, hence some more discomfort) and a little bit of tummy ache, but he ate his lunch, had a couple of drinks and got back to the important task of building himself a hospital (complete with BOPI unit) on Minecraft.

This is a non-chronological report, sorry, but it seemed important to get all the reaction stuff down and then go back to the trial stuff.

After the Boy had managed the first two doses, he was declared safe to take part in the trial.  He’d eaten a whole boiled peanut at that point.  The next job was to put his hospital number through the computer randomiser (2 out of 3 do the trial immediately, 1 in 3 are deferred for a year).  One of the Doctors asked if we’d like to do it in a year, or right now.  The boy and I both agreed that now was preferable.  And we are!  I’m really excited/scared/relieved/anxious that we’re on the immediate participation leg of the trial.  The thought of waiting a year and then going through all of this again – the double blind trial and the boiled peanut bit – really wasn’t working for either of us.

So, having been a nut free house for 6 years, I bought these home today.

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Two bags of 100 peanuts that I have to boil for 4 hours (I can do 100 at a time and then freeze them, and yes, those peanuts as they are are potentially very dangerous) so that I can feed the Boy a quarter of a boiled peanut every day.  I’m worried about tomorrow, naturally, but I think once I’ve done the first one it will be ok – a bit like when we did our first oral nut challenge for almonds at home.  I just need to know that the first day is ok and then we I can move forward.

He had a well deserved trash meal on the way home!  Cheeseburger, chips and juice (one of his five a day?!).

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For the record, and in case he reads this in years to come, I am so, so proud of him.  His courage, stamina, stoicism and resilience are an example to us all.

Well done the Boy, much love, your Mummy xxxxxxxx

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