Friday, February 28, 2014

Graduation Day

I didn't start really crying until about halfway home. I still haven't fully processed what I'm about to write here.

When my son started middle school and still had his milk allergy, my husband and I really lost hope. We had seen the statistics and knew the vast majority of kids who are going to outgrow their allergy have done so by jr. high school. The more years that went by, the smaller the chance.

And yet...we just returned from the last of five food challenges done this year: milk. And he passed. He passed. HE PASSED!!!

The challenge was very quick. Four doses, a total of 1/4 cup of ice cream, spread out over about an hour and a half. No symptoms. Nothing.

The doctor told him that he really has no restrictions from this point forward. We can ramp up slowly or just have him start eating everything and anything. We stopped in at Chipotle on the way home and he ordered lunch with sour cream. I started my knee-jerk reaction at the counter because I saw cheese in the guacamole...and then I remembered it no longer mattered. It didn't matter that I touched the sour cream in my own lunch and then dipped my hands into the chip bag. All old thinking.

We actually sat at lunch and talked about the different kinds of milk and cheese, something I never could have envisioned 19 years ago that I would have to do with my nearly-grown son. I told him that cow's milk and goat's milk cheeses taste different. That the sour cream he was not very impressed with was totally different than the cream cheese on bagels.

We talked about how he could have a bakery cake now for his birthday. How we could go out to dinner anywhere. How he could go on a cruise and eat from the buffet.

I told him how many pennies I had thrown into wishing wells over the years.

I honestly don't know what to do with myself now. I've promised him I will stop asking him if he's o.k. and stop watching him. I'm sure it will take a long time to adjust to our new normal.

Nineteen years ago, almost to the day, my husband and I brought him home from the hospital, our first-born son. We had struggled (as I'm sure all parents do) to get him into his tiny car seat and all the flowers into the car. We struggled to get everyone and everything in the house. And then we both stopped.

"What do we do with him now?" my husband asked. I had no idea. Did we leave him in the car seat? Put him in his crib? Take his coat off, or leave him sleeping? We realized in that moment how totally clueless we were about parenting.

Today feels the same. Exactly the same. Every meal, every family activity has been impacted by this milk allergy. And now...I don't know what comes next.

But i know it's going to be wonderful.

Thank you, every one of you. Thank you to his doctors, both at his regular practice and through Children's in Chicago. Thank you to all the teachers and parents who helped. Thank you to my bosses who gave me the flexibility to deal with the clinic days and doctors appointments.

No, we don't know if it was the FAHF-2. No, we really don't even care. Yes, there's still peanut (and maybe hazelnut and lentil). Tomorrow I will start dissecting things and wondering whether we should have been doing these challenges sooner. We'll debate the maturing immune system vs. the impact of the pills.

Today I'm going to go watch him sleep, just like I did when he was the tiniest of babies, and be so very grateful that he is my child and that everything is o.k.


  1. I totally cried while reading this. So happy, excited and hopeful.

  2. Wow. You have NO idea how happy I am for your family. It almost makes me think that there's hope for ours too. My son is in Jr High, and we, like you, have pretty much given up hope that he will grow out of the milk allergy. It only seems to be worsening as time goes on. A passed baked milk challenge gave us hope until it triggered 2 exercise-induced anaphlactic reactions (no problem .. just gave it at bedtime from then on..) but then also led to a diagnosis of EoE. Baked milk, our biggest hope to "train" his immune system was out of his diet.

    I completely understand your fear and uncertainty about where to go from here. Milk allergy has ruled over all of our decisions about what to eat, where to go on vacation, what activities he should participate in, even who his friends are. It will determine where he goes to university, and quite possibly who he dates. I just cannot imagine the freedom that would come from not having that allergy. Yes, he still has tree nut allergies but as you know, completely different ball game. We can live with that.

    So thank you for letting that tiniest little trickle of hope find its way back to me. And enjoy whatever the "wonderful" is that comes next.

  3. This brought tears to my eyes also. How marvelous for you all!

  4. Just read my comment and realized how negative it sounds. Just to clarify, I should say that we can live with the milk allergy too - we live very well with it! But I want the future for him to be unlimited, and milk allergy really limits him. And as jealous as I am, I am also really thrilled for you.

  5. I am crying as I read this. I don't know you but I am so happy for your family! My son is 14 and just passed a baked milk and baked egg challenge a few months ago. I hope that one day we can celebrate like I am sure you are! What a wonderful miracle!

  6. I am SO thrilled for you! How amazing that your son finally made it! My almost six year old is still anaphylactic to milk, including in baked goods, and I dream of this day. You just gave me a massive dose of renewed hope. Enjoy this new era!

  7. This was so beautifully, and emotionally, written. Congratulations to your son and family on this huge milestone. BTW, I work with your husband who shared this news at work today. -nn

  8. I have tears! I am so happy for you. We are a special group of people. The people who get it. Who get how challenging it can be to live with this- but for us, it's just life. Your post gives me renewed hope. As my 13 year old PN/TN/Coconut allergic daughter recently said " mom, it could be much worse. We really are lucky.". Cheers to you, mama.

  9. In tear right me hope! Thanks for sharing your wonderful news!

  10. Just like those who have already commented, I am in tears as well. Thank you so much for writing this and for sharing your thoughts and feelings so eloquently. This provides great hope for us as moms with children who have food allergies. I even wrote a blog post of my own, expressing my gratitude for this post. Many blessings to you, your son, and your entire family!

  11. This was one of the best stories I have read about overcoming the terrors of nature. I think that most of our allergies come from living in a first world country. Our environment is so clean that it barely allows for our immune systems to develop. They are simply not necessary anymore. I'm no professional though.

  12. I just read this to my son. Held it together until I reached the part about the wishing well...

  13. That is absolutely, positively fantastic news! Congratulations!

  14. This also made me cry. So happy for you and your family and the new experiences you will have in the future. I pray that one day my family will also get to experience this. Thank you for your blog and especially this post.

  15. So happy for you, your family, and especially your son! Thank you for sharing your journey with us. It gives us strength, and more importantly, hope. Thank you, again!

  16. Beautifully written, with your usual honesty. I am so glad I found your blog a few years ago and wish you every every continuing luck and success, as I do all of us that read you with a FA child. Now go eat freely and celebrate!

  17. Ooo, and now you can update your link and take that milk allergy off :))

  18. Thanks so much, everyone! We went out for Mexican food last night. He stuck to steak and skipped the refried beans (haven't worked through all the varieties yet), but it was such a great moment that so many families take for granted - both my kids around a restaurant table, able to order what they want.

    Laura, I did update my profile. Hooray!!!!

  19. Connie, I always feel badly when I post about us knocking off another allergy because I am so very aware that there are families out there like yours where allergies are only going the other direction. I do want to remind you that my kid had several anaphylactic reactions to milk. We were SO afraid of this allergen because we had seen the power of what it could do. The doctor really never thought he would outgrow, and his RAST is still ~8 for total milk (and numbers are high for each milk component as well).

    My point is that they just don't know with this stuff. My son seems to have had a sudden outgrow window for all these allergies. Maybe it was just a maturing of his immune system. I hope and pray you guys have the same experience at some point. Maybe FAHF-2 will help at least some of our kids. Maybe it will be Xolair.

    But the one thing I do recommend to everyone with this stuff is to be aggressive with food challenges. The Mt. Sinai recommendation is to test every two years for milk allergy when there's been no accidental exposure. It haunts me that he may have outgrown years ago, yet we were all waiting for the magical drop in the numbers that never came.

    It's also completely possible it was the medication. I wish we had a clear answer for all of this. But please don't give up hope. If it can happen for my son, it can literally happen for anyone.

    1. Absolutely wonderful to hear, tears are streaming down my cheeks!

  20. What an amazing thing!! So happy for you guys!

  21. Absolutely amazing and wonderful. I dream of this day for my son. He's 6.5 now, with allergies to milk, egg, peanuts and tree nuts. He's had anaphylaxis with milk.

  22. Hi FAB,

    Congrats on the wonderful news! I am so happy for you and your family. If it was fate, there is hardly a more deserving family than yours for all of the help you have provided for the rest of us.

    If you would not mind, I would love to know the detailed information of all of the allergens that your son has overcome since taking FAHF-2.

    What I mean is that it is difficult (if not impossible) to track down the source of the recovery without knowing his results (just) before the treatment.

    For the rest of us using it, it would be a huge peace of mind for as much information as you feel comfortable to share.

    For instance, if your DS failed a food challenge just prior to FAHF-2 that he is now passing, that would be good to know (or if he had a reaction to accidental exposure).

    Any blood work results would also be really helpful, especially an eosinophil count. After taking FAFH-2, eosinophils are supposed to come down dramatically, which corrolate to a likely drop in basophils, which are said to prevent an allergic reaction from being able to happen--even if the IgEs still exist.

    Anything more you can share would be much appreciated.


  23. My eyes also filled with tears. As moms (and dad) going through the same life experiences with food allergy kids, we get this. The tears are tears of joy and understanding. Your son's success is really important to us too, and not just because it represents hope for our own children.

  24. Hi FAB,

    Congrats again on the wonderful results! My wife said that she saw on your twitter account that your DS had failed cheese challenges just prior to taking FAFH-2.

    I think that is all the proof I need that the recovery WAS from FAFH-2--which comes from God, it it was still God, just seems to also have been through FAFH-2.

    If you can share anything more (including before and after blood work and other before and after results) that would really be appreciated.

    Thank you so much for all that you have done and we are very happy for you.


  25. Hi Shylock:

    I do want to write a follow-up post on all this as you are not the only one who ask asked about my son's test results and past reactions, but just a quite note to tell you he did not fail a cheese challenge. He never had a milk challenge prior to this one. However, we were introducing baked milk two years ago, before the start of the clinical trial, and my son did still have symptoms at that point with cheese products. The symptoms were very mild (stomach ache, itchy throat) and we did not treat with epinephrine, but we did scale back the baked milk to lower protein version.

    I don't have his basophil or eosinophil numbers - those all would have been part of the research study and those results are not shared with participants. (I will go back and look, but I'm pretty sure we just got straight-up RAST results.) His last whole-milk RAST was 5.71, which is Class 3. The doctor didn't do another RAST before this challenge because we decided to go ahead with it regardless of the number.

    I do think the FAHF-2 made a difference, but I don't have any solid proof. My son, my husband and my son's regular doctor are all skeptical. The clinical trial summary hasn't been published yet, which doesn't bode well for the results. It may be that only some types of allergies respond. It may be that the timing for us was just coincidental.

    But am I glad we did it? Yep. Even if it just gave us the courage to push for these food challenges, it was worth it.

    Thank you (and everyone) for your good wishes. We have had the most surreal week of our lives! Everything is still good and he's eating anything he wants at this point. We had enchiladas for dinner last night - baked cheese and sour cream. What a difference a week can make!

  26. Hi FAB,

    It's really great to hear about such a great week--no family deserves it more...seriously.

    Thanks for the more detailed info and I'm going to really enjoy going over the numbers from your post.

    I guess I am on the opposite end and am to a degree biased towards FAHF-2 since we're using it's do-it-yourself version with our DS (among other things).

    There is a new e-Book out about FAHF-2 ("Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure"), which is where my wife had read about your DS's prior reaction to cheese that stopped happening after FAFH-2. But the fact that the reactions were mild by the time FAF-2 entered the picture does add uncertainty as to the cause of the recovery.

    I share your thinking that something is up because the FAFH-2 results have been apparently delayed. There was a recent publication stating that the compliance was generally low--which may also be a bad sign for FAHF-2.

    On the flip side, I am yet to hear of a child/person who took FAFH-2 for 6+ months and then suffered a serious reaction. If anyone reading this knows of such a case, please let me know (which would be a downer). So far, all stories in humans (and of course mice) we stunning successes.

    Either way, enjoy the new phase in all of your lives. Here's to you all and hoping that the results get even better.


  27. ..and now? How is life now several months later? We are entering our second month, at the of 16 for my son consuming dairy. It's wild. We are slowly introducing him to cheese and all sorts of foods. Slowly, so he can savor the moments.

    Are you going to FABLOGCON at the end of the month? I hope so. I adore your blog, so that must mean I'll adore you.


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