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?
He did.
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.
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.
Wow, that's amazing!!! My son is peanut, dairy and egg allergic. I'd LOVE for him to be able to eat dairy someday. Dairy is the one that has proven anaphylactic for him. So incredible that research is getting there now!! I will continue to pray for success with the trials and I hope that someday soon there will be a readily accessible CURE for food allergies!!!!
ReplyDeleteWow -- that is amazing! I am grinning ear to ear right now. Please give your son a big hug from all of us allergy families for being so brave and for helping blaze a trail with this incredibly promising therapy. I hope it is more widely available soon!
ReplyDeleteAbsolutely love your blog, by the way -- discovered it a few days ago. I have slowly been reading every one of your blog entries, many of which I could have written myself.
My only gripe so far? I thought *I* was the allergy bitch!
Keep writing when the spirit moves you. It's great to have an independent, thoughtful, smart, well-informed, and witty voice speaking about these important topics.
Great news!
ReplyDeleteThat's fantastic! My heart was in my throat reading this. Glad your son has better tolerance. It gives me hope for my kid, I'm going to ask his doctor about it.
ReplyDeleteI seriously was brought to tears by this post. Congratulations! That is so exciting. Thank you and your son for forging the way for the rest of us. And, in case your son doesn't tell you often enough, you are a great mom.
ReplyDeleteJosh, this is still a clinical trial, so the medication will most likely not be on the market for several years yet. That's why we did the trial.
ReplyDeleteThat said, several people have contacted me to tell me they're seeing Dr. Li (the researcher involved with this) privately at Mt. Sinai:
http://www.mountsinai.org/profiles/xiu-min-li
Of course, it may be possible to get this from a traditional Chinese medical practitioner as well. One thing they noted while doing the formulation was that all nine components are needed.
There is still a peanut patch trial open at Lurie:
http://www.chicagochildrensresearch.org/allergy/
This one has also had good results in Europe.
Hi FAB. I just found your post and right now feeling so envious. My 6 year old has peanut, multiple tree nut and egg white/yolk allergies so severe, the IgE readings for all are higher than the tests go. 1.5 year old has all same allergies plus milk. I wish I could get the 6 year old into a clinical trial, too. We live in California, so I'm not sure meeting with Dr. Li in New York would be feasible. I'm hoping another trial will open soon at Stanford or UCSF in her age group. Some parents are great and really take the allergies seriously. I appreciate those people. Others think that I over-exaggerate and blow-off my concerns. I liked your post about the smaller epinephrine auto-injector. That would be great! I've heard of a lot of people with allergies who don't carry their auto-injectors because they don't fit in their purse. I actually started carrying adult benadryl because of an incident where are potato-allergic friend had an accidental exposure and didn't have any medication with her. Luckily her symptoms were mild.
ReplyDeleteThanks for your blog
Hi Feliza! A couple of things...
ReplyDeleteIf you haven't read my post about the meaning of RAST, you should.
http://foodallergybitch.blogspot.com/2012/03/competitive-parenting-and-blue-ribbon.html
The idea that reactions are more severe because RAST numbers are higher is a really common myth in our community. Another thing you need to know is that these tests are not always reliable for kids with multiple allergies, as RAST can be elevated across the board.
All that said, your kids sound like good candidates for FAHF-2, as it does supposedly work for all allergens. (We're still waiting to test this out...but hopeful.) I will be sure to ask when we go back if there are plans for a wider clinical trial, or if they anticipate being able to go to market right from this trial.
In the meantime, you should definitely be following the research on baked egg. I'm sure there was a magic line my son crossed where he could tolerate baked milk. In retrospect, I wish we had been even *more* aggressive about testing. We just didn't know there was such a big difference between baked and raw milk and that kids could pass baked challenges with very high RAST scores.
Kind of makes you wonder sometimes what the point of a RAST even is, doesn't it? I'm glad you found me - hang in there!
We know based on experience that our children are very allergic to egg, even in baked products. IgE levels for the three food types in the 6 year old were all greater than 100 kU/L. The 1.5 year old can tolerate milk that has been heated (baked, mac & cheese, etc.). An article just came out from Mt. Sinai regarding baked egg (http://www.sciencedirect.com/science/article/pii/S0091674912009530) and they used RAST scores. If IgE levels were greater than 50 kU/L, they recommended the participants avoid all egg. I agree, allergic response doesn't always correlate with IgE levels. The 1.5 year old had seemingly high scores to wheat, but tolerates it just fine. Unfortunately, the way RAST is performed, only gross reactivity of the antibodies is measured. Research is being conducted to tease out the different epitopes, which in theory would result in a test with better correlation and more reliability. But I'm hoping by then, we as a community won't care about those tests anymore because FAHF-2 will be widely available.
DeleteGlad to see you're on it, Feliza. I didn't mean to imply all kids could tolerate baked milk/egg. My son certainly couldn't before age 10. We just don't know where the tolerance developed, since his RAST scores for milk are essentially unchanged from around age 5.
DeleteIt's an amazing story. The recipe came originally from an ancient chinese text called The Yellow Emperor's something-or-other, which detailed a treatment for something that sounded like what we now call food allergy. I'm sure it's been modified somewhat by the good folks at Sinai, but still. It's a combination of things we would consider herbs and spices.
ReplyDeleteMark, that's too cool! Thank you! I'm going to go post that on my Facebook page.
ReplyDeleteThis is so wonderful. I am on the edge of my seat waiting to see the effect on your son's other allergies.
ReplyDeleteWe, too, have been doing the FAHF-2 protocol for our two allergic boys. We are not in the trial since they are too young. Also, we live in Houston, TX! January will mark 2 years on the formula for us. My 5 year old has had a drastic drop in his peanut allergy. It was off the chart (100+) when we started, and, when lasted checked a few months ago, it was at 24 on the 1 - 100 scale. His other (many) food allergies are also coming down. My other son has seen some reduction, but not such great reduction. It's expensive to buy the pills, but we think it's worth it! We will get new blood tests done in the next week or so. I will keep yall posted! Thanks for the blog. Support is so important.
ReplyDeleteHi Ellietherrera, glad to see someone else seeing Dr. Li privately for FAHF-2. My 5 year old daughter is also doing the herbal medicine with Dr. Li but we are taking it very slow...building up the number of capsules (yes, we are doing capsules instead of the tablets) slowly over months. I would love to compare notes with you over how the treatment for our kids' is going. If you would like to chat, please email me at Nice1704@yahoo.com. Thanks!:)
DeleteThe thing is, IgE does not determine the severity of the reaction. That's why I loved component testing--it told me the exact proteins to which my son reacts (two of the "high-risk" for anaphylaxis proteins). FAB has the absolute best article explaining component testing.
ReplyDeleteSo we did OIT (desensitization) and my son's peanut IgE dropped from 90.7 to 17.9 this year in maintenance after one year of increases. And people with a 2 or lower have actually had anaphylactic reactions. 17 is "severe" but he has an 8 peanut tolerance-daily. And could probably pass a 24 peanut food challenge now we just haven't done it. (switched doctors/no need to test the boundaries of the treatment).
With the patch and/or herb, does the child actually build up a tolerance to the allergen? Do they ingest the allergen? Not just in a challenge but daily. My son LOVES peanuts so it is no problem for him to eat 8 a day--for life if need be. Hopefully that IgE will keep dropping but we'll always have epipens and consider the worse case JUST in case.
Liseetsa, we'll let you know after our January challenges! I don't think there's any official oversight from the clinical trial after January, but I'm hoping they will have recommendations for our doctor.
ReplyDeleteWe will definitely be going back to baked milk as soon as the trial is over (milk is a far bigger issue for us than peanut). We will need to be careful about how many allergens we're throwing at him at one time.
It does not seem to work the same as OIT because the tolerance is just *there* once the medication has been taken for a while. The big questions are: does that tolerance last (we'll know some of that in January) and does a longer period of medication use = even more tolerance?
The problem with clinical trials is that they just raise more questions than they answer. :)
Thank you, thank you, thank you FAB and your brave son for doing this for all of our children with food allergies! I have pinned most (if not all) of my hopes on FAHF-2 working out and it looks like my hopes are coming true! *fingers crossed*! My 5 yr old daughter is also doing the herbal treatment privately with Dr. Li. We started more than a year ago but have not been consistent with taking the meds due to other (unrelated) issues. So it's too early to tell if it's working or not (i.e if the IgE is dropping or not). Last we checked was in June and the peanut IgE was still over 100. However, her egg and coconut levels had dropped drastically by almost 50%! Not sure if it due to the herbal medicine but I'll take it! :) Thank you again for doing this and wish your son all the best for the challenge in January! I'm praying the tolerance he has developed will still be going strong then!
ReplyDeleteThank you for this update! I have been tracking FAHF-2 for years and was ready to give up on it until I saw this post. I'm totally with you on the milk. To know my son could eat real pizza by the time he is a full fledged teenager would be a dream come true. Please tell your son thank you for being willing to try this even though the trials can be very scary and uncomfortable. There are a lot of kids and moms out here pulling for him.
ReplyDeleteWe see Dr Li privately as well. I must admit the pills are intense. My son has been doing them for about 1.5 years. At first our IGE continued to go up - total amounting to 1702 (I understand it doesn't necessarily correlate to reaction severity - but we track it). Then in June - 1 year after the herbs (and some other things - supplement-wise) - dropped to 1079. No new foods. Then last week - we retested IGE at 1165. I'm bummed because I would like us to drop into range for new foods - dairy, egg, nuts, sesame, legumes (I'll pretty much take anything at this point). We have a hard time following the protocol and probably have about 70% compliance - each morning and night I crush the tablets and put into capsules. Then my son (7 this month) swallows with much cajoling and reminding. It gives me hope to hear that your son tolerated more of the food. I hope that we tolerate more - and maybe we don't even know it. At any rate good luck in January.
ReplyDeleteHi Denise, it's so nice to see another family that sees dr. li for the fahf-2! Dr. Li gives us the herbs in capsule form. I open the capsules and dissolve the contents in hot water, mix with honey and give it to her to drink. She actually likes it, lol!! My daughter initially started taking the pill form of the herbs but on the 3rd day developed severe stomach pain which may or may not have been related to the herbs. Dr. li said it most probably was NOT the herbs, but we didn't want to chance it and decided to go with the capsule version which according to her is much milder. I also add the contents of Digestion tea capsules to the mix along with crushed tablets of ling zhi. So, these are the 3 we take: mei huang capsules, digestion tea capsules and ling zhi tablets. Does your son take the same or does he have different ones? From what I understand, Dr. Li treats each person individually according to their specific condition, so the treatment is not the same across the board. We also have not been taking it regularly, so maybe that is why our peanut IgE did not drop, although our egg and coconut IgE did drop dramatically when we last tested in june. My new year resolution is to be more consistent in giving her the herbal medicine, lol!!
DeleteDenise, one of the things we hope to find out at the end of the study is the relationship between IgE and tolerance. The IgE test is so inexact that the researchers may find there is no magical number where tolerance suddenly kicks in. We haven't been told the numbers (and won't until the study completes), but I do know none of the kids are suddenly 0.
ReplyDeleteMy son has been eating all kinds of "may contain" foods this Christmas season. He has one incident of surprise nighttime vomiting, but other than that, no issues at all.
We go back in just a few weeks, so I'll write again then. :)
Any new news on your FAHF-2 experience in the last month? I have a five-year-old with egg and tree-nut allergies and am hoping to try it.
ReplyDeleteHi, Helen. No real new news to report, as my son will not have access to the medicine again before summer. We are doing baked milk. A week in, he has no symptoms at all, but we were at this point before the study. We're going to start pushing a little harder, perhaps re-try some cheese on a weekend when we can deal with possible consequences.
ReplyDeleteI'll write an update soon about milk dosing.