Tuesday, October 16, 2012
FAHF-2: The Holy Grail?
It has been a LONG quest. As I mentioned in last week's post, he took somewhere around 4600 pills over the last 6 months. During that time, we had no idea whether what he was taking was placebo or the real medication.
Yesterday, we girded our loins and got in the car before sunrise, knowing that this time it was no rehearsal. Since he had no issues with the applesauce on Thursday, we knew the poisoned apple (sauce) was waiting.
As with previous challenges, there were 11 little applesauce containers lined up on the counter of the exam room. After placing an I.V. line and doing some preliminary vitals, the clinical manager handed him the first container.
For the next two hours, I did my best to either read or pretend to read while other people asked him how he felt. Any change? No change from last time? Do you feel o.k. to go on to the next dose?
Around Dose 4, everyone started visiting a little more. Dose 4 was where he had started noticing the sensation of throat closing last time around. Dose 5 was where it escalated a little; Dose 6 was where they had called it off. 490mg total peanut protein.
Dose 5 came and went uneventfully. Dose 6. Dose 7.
Around Dose 8, my son finally said "I can tell it has peanut it in. I'm starting to feel something in my throat." When asked what the sensation was on a scale from 1 to 10, he answered "1".
Things moved more slowly then. After Dose 9, the sensation in his throat moved up to a "2". After Dose 10, it became a "6". By this time, he was also a little itchy in his throat and the sensation of constriction was getting more and more pronounced. Finally, he coughed a little and the research staff called it off and gave him an antihistamine.
Unfortunately, the feeling of constriction in his throat continued to climb in intensity, despite the antihistamine. My son was starting to feel a little anxious, although nowhere near as anxious as during the initial fail back in April. However, they pulled out the Epi-Pen. In LESS THAN TWO MINUTES (no kidding!), he went from an "8" to a "2" with regard to throat constriction. Thank God for the wonder drug.
All in all, it was less stressful than the first challenge, even though he got a good bit further. While the clinical director said she couldn't tell me exactly how much peanut he consumed until we complete the next set of challenges in January, she did tell me that the total amount for the trial is 5000 mg of peanut flour, somewhere around 16-17 peanuts. My son completed all but the last dose, so that probably put him in the 4000 mg area.
That's almost eight times the amount of peanut he consumed in April.
Think about that. He achieved a better result than most of the oral tolerance trials...without any actual peanut consumption. Best of all, the medication has been reformulated so kids can hopefully achieve the same result without needing to take 30 pills each day.
So...here we are. What I thought might come to pass has come to pass, thanks to the hard work of a lot of good researchers and some really brave kids.
A therapy that mitigates the severity of food allergies has been discovered and tested.
I asked it back in May and I will ask it again now: How much risk are you willing to take? How much discomfort will you tolerate? Can your kid take 10 pills a day? 5 pills? Will you be willing to undergo a food challenge at the end of the therapy to see if it worked? Will you be the first to step up...or the last?
For us, the real excitement is all ahead. While it's very nice to have a larger buffer with regard to peanut, what we really want to know is whether our son can now tolerate more MILK. A tablespoon of peanut butter is great, but a tablespoon of milk would be even better. Unfortunately, we are still supposed to avoid all baked milk introduction or additional food challenges until the study completes in January. However, that's not long to wait to see if perhaps everything is better for him.
All his food allergies getting better — that's the real Holy Grail. Here's hoping I can clink chalices with you sometime next year when we confirm we're already there.
A heartfelt thank you to all the wonderful people at Lurie's Children's Hospital who made this both possible and easy.