I can’t believe it’s been FOUR months since I last wrote an update on our journey!
If you haven’t read our last update, you can find it by clicking here. As far as routine, our lives have been pretty consistent over the past four months. We still drive to Baltimore for our up dose appointments every two weeks and we still give our son his daily dose after dinner which signals the start of our chilled-out, bedtime routine over here at the house of Chew Chew Mama.
Several people have asked me if our son gets treatment once every two weeks at Johns Hopkins. The answer is no. He gets a dose every single day that we give to him at home. We travel to Johns Hopkins every two weeks only to increase the amount of his dose in the presence of our experts to make sure he tolerates it safely. When those appointments go well, and for us they have, they send us home with two weeks worth of dose cups that we give daily until the next appointment.
The last time I wrote we were about to reach 175 mg (equivalent to about a half a peanut) which was a significant milestone for us, because it was the dose where our son began to escalate into anaphylaxis during his food challenge back in October 2013. Matching that volume was a great day, because we realized with absolutely zero doubt that OIT is working for our son. He tolerated it fine with just a few “itches.”
Since that time we have up dosed seven more times and I am happy to say that our son is currently tolerating 1600 mg!! (equivalent to just over 5 peanuts)
To say that this treatment is life changing is an understatement.
I’m not sure if every mom fears loss with the same intensity as I do, or if my past muddies the water…but this allergy business is tough stuff. Teaching him, keeping him away from peanuts, reading labels are all manageable things, but the constant fear and worry of the worse case scenario…that gets pretty intense sometimes. In participating in this clinical trial, all of the fear has diminished for us and hope, excitement, peace and thankfulness are in it’s place. This is the greatest possible gift and far beyond anything we had hoped for or imagined.
So what’s changed as the doses have gotten higher?
Ben’s main symptoms used to be “itches” (eczema), flushing and hives. As we’ve progressed over the past eight months and the doses have increased his symptoms have changed. Ben still complains of “itches” from time to time, but it isn’t nearly as intense as when we started and eczema flairs are rare. New symptoms are ear pain, mild gastrointestinal discomfort and vomiting. Ugh…I know…vomiting. On a few rare occasions, Ben’s body has just decided to refuse the dose and send it back out? Before you start to panic about our little Ben, let me assure you that our little dream boy is doing fine. In over 240 doses, he’s only vomited 3 times — and when we saw it starting to be a problem, our doctor had a plan to help us make that stop immediately.
So at this point, our number one symptom is “belly-aches” paired with the fact that Ben absolutely despises the taste of his dose. We heard that once children are desensitized to their allergen that many absolutely despise the taste. We met some kids that experienced this early on in other studies and this is proving to be true for Ben as well. Not a fan.
We have A LOT more flour to mix into food now, so the applesauce hit the road a while ago and we upgraded to chocolate milk. His dose cups smell exactly like a Reeses Peanut Butter Cup….sounds great, right? Not to Ben. At 1200 mg, he told me that his dose was “so gross” and that he didn’t want to do them anymore. Nope. NOT AT ALL. Arms crossed. Lips closed. Done.
So I finally had a talk with Ben to tell him why he is taking his doses.
You may remember from past posts that after the very first dose last year, Ben (then age 3) went into preschool and told his teacher that he took medicine and didn’t have a peanut allergy anymore. This evoked panic that all of our work teaching him how to protect himself would be undone, so we’ve always kept the trial details to a minimum and told him that his dose was just “allergy medicine.”
But that night, I looked at my brave little boy and we had a heart-to-heart. Benjamin (now 4 1/2) had a lot of great questions, but the highlights went like this. I explained that his doses are “medicine” that his doctors are using to try with all of their might to get rid of his peanut allergy. He replied, “Mommy, you mean like I could eat peanuts and they won’t hurt me?”
I replied, “Yes, baby, that is what they are trying to do. They aren’t sure if it will work, but they are trying really hard to help you. So tell me what you want to do. Do you want to keep doing your doses or do you still want to stop?”
He looked at me with determined, little eyes and said, “I want to drink my dose, mommy. I don’t want my peanut allergy.”
It is such a turn events in our lives to go from worrying about the slightest chance of cross contamination to reaching the “problem” of trying to find ways he likes to eat it. What a very wonderful problem to have! Amazing.
So here we are getting VERY close to the next stage of the study — the maintenance phase. All of the appointments up to now were part of phase one – the escalation phase – to get us up to 2000 mg. In order to stay in the trial, one of the main goals is being able to make it to this 2000 mg dose amount. In two weeks, Benjamin will up dose to that amount and we will enter the next phase of the trial! Hooray! He did it! This means that we move forward and my drives to Baltimore will change from every two weeks to every 13 weeks! (woot! woot!)
So what happens in the next phase?
We will spend the next 18 months giving Ben his dose every single day. We will be monitored by our doctors and then at the end of 18 months….we stop.
The third and final phase of the trial is the avoidance phase. At this point, Ben will stop taking doses for 6 months and then he will go back in for a food challenge to see if he is still desensitized. In previous clinical trials, 50% of children got their allergy back. It is our hope that Benjamin will be a part of the percentage whose allergy is cured indefinitely. This current study is hoping to see a big change in previous numbers. It’s different from ALL of the previous trials, because it is treating the youngest kids ever treated (early intervention) and it has a much longer maintenance phase (1 1/2 years).
The changes that we’ve seen in the past 8 months are astounding. We thank God every single day! We are witnessing a miracle and are so grateful for this hope! Thank you for all of your support and prayers. So many of you have been following us, have reached out with a note, a phone call, a text or a package that has arrived at just the right moment and we are so grateful for your friendship, love and support!
Before I close, I want to answer one last question that I was asked. Can a child reach a point where their body can’t tolerate anymore? The answer is yes, it’s called reaching “threshold.” Some children in this study are having more difficulty escalating than Ben. Children have had to drop out of the study, because they were at threshold and not able to continue up dosing to 2000 mg. There is still research that needs to be done to find out why some children tolerate this treatment and others can not.
We are definitely doing our part to find a cure every single day. We know that the results of this study go beyond our family’s wishes and effect the entire community of children. With that in mind, if you are able to join us this year for the 2014 FAREwell to Allergy Walk on September 28th, we would love to have you come join us and walk with us on our team! You can find our Team Mighty Morrisons walk page by clicking here.
Big Hugs & Love To You ALL!!