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| The pills smell like a combination of chocolate and tobacco. They come in HUGE bottles that get refilled each time we go back. |
Any of you who have teen-age children can understand how difficult the "same time" requirement is, since waking time on a school or activity day might be 6:30, and waking time on a NON school or activity day is more like...1:00 in the afternoon. So, we've stretched the rules a bit (with their knowledge) and just ensured that he eats three times and takes the meds three times, at least 4 hours apart. Apparently this is an issue with just about all the trial participants... except the lone girl, who I'm sure is organized, prompt and responsible.
I've seen on my blog stats several searches for "how can I get FAHF-2." The answer is: you can't, at least not through Western medicine. I think they are hand-making these for the trial participants. They did mention that they've reformulated the drug now so future participants will not need to take as many pills, which is excellent. This would not work long-term for anyone. The constant reminders are a major source of stress in our house.
They still need two participants in the Chicago trial before they can "close it out." What that means to us is that, until everyone finishes the trial, NO ONE finds out who was taking placebo. And, if we do have placebo, we will not get the real drug until everyone completes.
Of course, there's one other way we could find out: by a difference in the challenge test dose tolerance.
In September, we'll go back and do the whole testing rigamarole over again. Ten days off the antihistamines, followed by two food challenges at least three days apart. I know my son is dreading it. (Not the challenges! the being off antihistamines!) If he gets to Dose 6 again, then either we had placebo or the medicine just didn't work. If he DOES get further, they will continue the medicine another two months, into November, and we'll go through yet a THIRD round of challenges in the hope he'll get even further.
If you are at all interested in participating in the Chicago trial, PLEASE contact them! We really want to see it get closed out so we can find out at the end what all the work was for. Also, they mentioned at the last visit that they will be adding a trial shortly for the peanut patch that will include component testing for all participants. The peanut patch trial will take kids 6 and older and is part of a network of trials throughout the US. (This patch has already been tested extensively in Europe with very good results - about the same levels of tolerance as the oral allergy trials.) Later in the year, they'll be looking for participants for a wheat protein trial.
Yes, it means a food challenge...but who knows? You might actually get good news from that challenge. After all, we heard through the grapevine that two of the kids tested for the FAHF-2 trial passed the initial challenge. (Wasserman's assessment at AAAAI this year was that 30% of kids in the initial OIT trials did not really have a peanut allergy...so it's obvious why they've added challenges to most subsequent trials.)
If you have an older child and are starting to think about the dangers from almost-inevitable exposures, I hope you'll consider getting involved. The risk calculation changes a lot as they age. That 5-peanut buffer that didn't seem like such a big deal when they were little and we could control all their food becomes much more important as they morph into risk-taking semi-adults. More than three quarters of the kids in the OIT studies showed an improvement in quality of life measurements. That alone makes a trial worth considering!
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Thank you for including information on OIT. My son is eating 8 peanuts a day. He did not have any reaction while they were increasing his doses and we pray he never has another reaction now that he has the 8 peanut tolerance. Anything is possible so we still carry emergency medication (epipens). I would be interested in seeing where the patch has positive results allowing the child to consume the peanut. Up to now, I've only read that researchers HOPE that could be possible though it is not the goal of treatment like OIT. My son wants that Snicker bar! And to not die of course.
ReplyDeleteThanks for the update. I've been anxious for updates. My daughter is too young but I am hoping this will benefit her. I'm surprised they haven't had enough volunteers. I would jump at this. I'm still hoping for outgrowing it but because of both tree nut and peanut reactions, it's unlikely.
ReplyDeletePreschooler mom, it's a pretty tough study. The study coordinator said most people bail when they understsand they have to let their child get to the point of (and sometimes past) anaphylaxis three different times. And then, it's 30 pills a day for 6 months! Really - my son is an unsung hero for doing this.
ReplyDeleteHopefully you'll just have a new medicine available in a few years that works. Wouldn't that be wonderful?????
Actually, you can go and get FAHF-2 (or its equivalent) if you are willing to pay out of pocket and be treated privately, at Dr. Li's NYC clinic.
ReplyDeleteWe're doing that now (6 yr old daughter, peanut allergy). The protocol at her clinic is pretty involved--herbal bath, herbal cream, + 28 pills/day.
We have only been doing it for a couple of months for my daughter, so no real results so far, but we're hopeful. The eczema around her mouth has gotten better, though her overall IGE level did go up between Jan and July (hard to say if that is bec. of seasonal allergies, or the normal course of things, or what)
We are scheduled to see the doctor in Aug, and then we will go every 6 months after that since we live out of town.
It's not cheap. We paid over $3000 for the initial appt + supply of meds through Sept for the two of us (i just have seasonal allergies/mild asthma, but thought i would try it too since they are getting worse). I have been taking the pills since Jan and my spring allergies were WAY better this year.
the contact person to set up the appt and to get more info is Sharon Hamlin: sharon.hamlin@mssm.edu
I asked our doctor in Chicago about her other patients' experience with getting the meds from Dr Li's clinic; she has one patient who has done it for 18 months and whose levels improved, but has not yet tried a food challenge, and some other patients like us, who have only been on it for less than a year.
the upside of getting treated at Dr Li's clinic is that there are no placebos or food challenges; the downside is the expense/travel
Yes, I should have noted that... You're the third person I've heard of who's going to Dr. Li directly.
ReplyDeleteIf you don't mind my asking, what has been promised as a result of the therapy? Has she talked about patient results at all?
Also, do you mind sharing the medication cost alone? We will have access to it once the trial completes, but I am nervous that it's going to be a heftier expense than we had anticipated.
She was pretty careful not to promise anything--it's a clinical setting, she has no control over what the people are really doing at home, the numbers are quite limited.
ReplyDeletebut what she did share with us was definitely convincing--patients whose overall IGE was like 10,000+ or 2000+, with like a 50% decrease over the span of a year. of course these were individual cases.
she told us to think of it as a 2 year plan--we should see something happening by 2 years if it's gonna work
we spent $800 at the initial appt in spring 2012 for meds + appts (for 2), $2800 since then on meds alone. we have a 5 month supply of the bath salts and 5 months of one of my kind of pills, but i will need to make another big purchase of everything else soon (3 kinds of pills for her; herbal cream; another kind of pill for me)
so roughly $5-6,000/2 people/year [not including travel]. it's a significant investment. but then again if it works......
i would be signing up for the trial right now if she were old enough!
i forgot to clarify--that cost was for 8 months of medicine for me, 4 months for my daughter (plus some extra)
DeleteThanks! If it works, the cost is nothing. We easily pay that out in special foods every year.
ReplyDeleteI hope it works for you and that you'll report back on the progress!