Brief FAHF-2 Update

A couple of you have asked about the progress with my son's FAHF-2 clinical trial. I haven't written about it because there just isn't a lot to write!

The pills smell like a combination of chocolate
and tobacco. They come in HUGE bottles that
get refilled each time we go back.

He started the meds after our challenge testing in mid-April. We've been back for a six week check-up that was uneventful. Other than that, the biggest challenge is simply getting him to remember to take the meds and take them fairly consistently. They're supposed to be done at the same time each day.

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.

I have had trouble impressing on my son that this is a bit like Willy Wonka's Chocolate Tour. If you break the rules, you're out, and the prize is possibly all at the end. If he's taking placebo, we want to make sure we follow the rules and stay in so we can get the real drug! No missing doses!


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. 

The first couple of weeks he was taking the meds, he was very sniffly and congested. Not a cold...no coughing...just an odd throat clearing and nasal congestion. Was it related? The trial coordinator just said "hmm". She did say none of the other kids were reporting that as a symptom, and that the "symptoms" seemed to be all over the board. Of course, everyone is looking for symptoms, so it's possible nothing is truly related to the medication, even for the kids taking the real McCoy.

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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A Peanut Allergy Cure Has Been Discovered!

And now it's the day after.

What do you do? How will your life change?

I was struck today by the comments on various message boards surrounding Hugh Sampson's statement that food allergy oral tolerance therapies are not ready for prime time. This isn't really surprising — it's something doctors have been saying for some time if you read beyond the sensationalist headlines. Many of the kids in these studies do not achieve true tolerance. They are only able to eat MORE of the allergen. When stressors on the immune system occur (illness, environmental allergies, menses), their desensitization level can change, causing reactions to an amount of the food that was fine just the day before.

However, there's another side to the controversy. If you read the synopsis of the AAAAI discussion about oral tolerance studies, you'll see an important point:

Quality of life in patients on peanut OIT vs. avoidance was remarkably improved - 90% improvement in QOL scores.

90% of kids (and presumably their parents) felt that the therapy had helped them to be happier. To fit in better. To live like a "normal" kid.

As my son has gone through the introduction of baked milk, and now the FAHF-2 clinical trial, I've had to confront head-on my fears. As I've indicated in other blog posts, baked milk tolerance is not easy. There are very definitely symptoms. The FAHF-2 dosing has also not been easy so far. My son has low-grade congestion much of the time. A mystery stomach-ache. Are they side effects? If so, how can I do this to him?

Which brings me to that peanut cure. Maybe it will turn out to be FAHF-2. Maybe they'll discover the trick to making oral tolerance more effective. Maybe it will be the peanut patch.

Whatever the cure turns out to be...how much risk are you willing to take? How much discomfort will you tolerate?

We are a VERY risk-adverse community. I am concerned that many parents will simply turn down the opportunity for a cure if it involves even the smallest risk or discomfort. And the odds are, based on what we've experienced so far, that it will involve one or both.

Envision yourself the day after treatment ends. Where would you go? What would you eat? What would it feel like to never have to explain allergies again? To add spontaneity back into your life? To not worry constantly when your child is eating out? Sleeping over? Growing up?

It can be hard to even hope again. It can be even harder to discard the precautions and even phobias we've put in place. But it may be the cost of a cure.

Every young mother faces this dilemma the first time she takes her new baby in for the 2-month check-up. There are risks to vaccines. They are minor, but real. How can I do it to my beloved baby? And yet the benefits are very clear.

It's possible to avoid the shot, and therefore the risk. It's possible to find others on the Internet who will tell you that you did the right thing, that all risk is unthinkable and vaccines are a conspiracy. Most of us choose to take the risk in the name of the greater good.

The day is coming. There are more clinical trials than ever going on. Are you ready to choose when the cure finally arrives?

Maybe it's already here.


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Food Allergies: An Indecent Proposal

When the stresses of dealing with food allergies were particularly bad, usually right after (or sometimes during) a hospital trip, my husband and I used to play a warped little game called "What Would You Pay?".

The rules are simple: name a figure you would be willing to pay to make food allergies go away with the snap of a finger. You can't just say "a million dollars" because you don't have a million dollars. (If you really do have a million dollars at your fingertips, perhaps this blog would be more to your liking?) You have to really think about what not having food allergies in your life would be worth to you.

The first five minutes of the game usually involved us calculating all the things we already pay for because of the allergies. $1000 a year (easily!) for special groceries, chocolate, treats. Say $500 for medications. Another $1000 for doctors and hospital bills in a bad year. $500 a year to provide treats for as many of the class parties, soccer games and birthdays I could weasel my way in to so he wasn't left out.

Then we think about the money we didn't earn because of food allergies. When our son was little, we managed a job share -- 55 hours between the two of us at one company. But, this didn't last and eventually he stayed home while I worked. Let's say $400,000 (10 years at $40k).

Then there are the things we bought to make life easier. The kitchen appliances and camping gear for travel. The van to haul all the crazy stuff around with us. Kitchen-Aide for making bread. Food dehydrator. Popsicle molds. I would guestimate a $20,000 premium over the last 10 years just for this kind of stuff.

So now the game has shifted to what DID we pay and the answer is ~$471,000 over the last 17 years. Only half a million.

Then there's the cost of NOT saving the money from my husband's nonexistent job. We're now looking at funding our son's college education with loans because the choices we made to have a stay-at-home parent resulted in no college fund. Even if you discount the principle, let's figure $60k in interest that he/we are likely to pay over the next 20 years that we wouldn't be paying if the money were already saved.

When we start taking into account what we would be willing to give up in order for our child to be just like the other kids, things start to really get fun. Eating out. All Starbucks coffee forever. Magazines. Gifts. Hosting parties. New clothes - can buy used. Phones. Of course, many of these things have essentially already gone by the wayside, but would we give them up forever? In a heartbeat. Could we come up with $28k a year in savings or second jobs? Not easily, but we could if we really had the promise of a cure. $28k x 17 years = $476,000. Plus the college loan interest - $536,000.

Guess what? We really would pay a million dollars.

Wouldn't you?