A little under a year ago, I first told you about our son starting Oral Immunotherapy (OIT) for his severe peanut allergy. Along the way, I promised to give you updates to let you know how the program worked out for us. I haven't given one in a long time just because of time, but we're at the stage where I feel it's only fair to give full disclosure to any who may be considering OIT for their child's allergy.
Before I go any further though, I just want to say, I would do it all over again in a heartbeat.
That being said, it has taken us much longer than I expected to complete OIT for his peanut allergy and we're not there yet.
When our son reached a dose level of 6 peanuts twice a day he started getting some mild tummy aches. Thankfully they were easily remedied by just making sure he ate more food with his doses.
After a few weeks, we increased to 8 peanuts and that was our longest time on a dose (so far). Initially, his body had some trouble adjusting to the new level and then he had a few rounds of illness that required us to skip or decrease his dose level which always means taking a few days to work our way back up to the current dose. Needless to say, that threw us off track. In fact, some kids that we started before are done already.
Then two weeks ago, we FINALLY got to move up to 10 peanuts twice a day.
That was a Tuesday. By Thursday or Friday he caught his baby brother's cold and wham, we were back to having to skip doses and then slowly work our way back up again. Then, when we got to our 10 peanuts twice a day level again, he had transient (non-itching) hives one evening. Those don't need to be treated with Benadryl or anything, but they are always an indicator that the body is "adjusting". Then this past weekend he had several more transient hives as well as a couple "regular" hives on his neck.
Usually when that happens, it's the first sign that his body is fighting off or coming down with an illness, but so far, three days later, that's not the case. (Or, I should say that he at least didn't get sick. Maybe his body just fought it off).
That brings us to this morning.
The rule of thumb is, you never "dose" on an empty stomach, so, after our son woke up this morning, I gave him two travel packs of applesauce like usual, a breakfast cookie (which is pretty dense) and then gave him his 2 1/4 tsp of peanut butter with some mini chocolate chips on it and a few sips of water. I usually also give him a sliced up banana with honey on it before his dose. This morning, though, I gave him some pumpkin bread instead, but without thinking, gave it to him after his dose rather than beforehand.
Unfortunately, I was in a hurry to get in the shower before company came over so after his dose, I forgot about him finishing the pumpkin bread and told him to come upstairs with me and get dressed while I took a quick shower.
About half way through my shower, my oldest son burst into the bathroom telling me that my other son (whom I had just given a dose to) was throwing up. (Not what you want to hear when you are half way through your shower and have to jump out dripping wet and freezing cold.) Grabbing a towel to throw around myself, I got to him as fast as I could.
Bless my little guys' heart, he got to the trash can in time and I knew pretty quickly that it was from his dose since he'd been completely fine beforehand and didn't appear to be ill afterwards. He was, thankfully, unphased by the ordeal. (Seriously, this kid is my hero after all he's been through over the past year. For a 5 year old boy, he has handled everything in an incredibly mature way. I couldn't be prouder of him.)
I made a quick call to his Doctor and explained what happened. He said to just watch him and to make sure that he stayed calm a little longer than usual this morning and that for his evening dose we would cut his dose in half and then go back to regular dosing tomorrow morning. (Cringe...I hope we don't have a repeat tomorrow morning, but I will make sure he eats more this time.)
Later on in the day, I got to thinking about life after graduating from OIT, which is, hopefully not that far off and started having some questions, such as:
Q: If we are this close to graduating and he still threw up from 10 peanuts is his body going to suddenly be "fixed" in just one more up dose? I doubted it...
A: Yes, he will finish the program, BUT he will not be eating whatever peanut butter products that he wants to once we are done like we originally thought.
Most kids, once they finish OIT can eat peanut butter cups, peanut butter cookies, peanuts, peanut donuts or whatever else they want with peanuts as long as they follow the "No Exercise" rule of 1/2 hour before eating and 2 hours after eating peanuts.
Unfortunately, this will not be the case for us.
Update: we reduced our son's dose yesterday evening to half of his regular dose and he still got a transient hive. I texted his doctor and he said at least now we knew the incident yesterday morning didn't happen because we thought our son didn't have enough food in his stomach. The fact that he got a transient hive at half dose is actually a relief because it would appear that he is dealing with something else and that he WON'T have to wait 1-2 years to be able to eat peanut products (other than his regular doses). I'm really praying that is the case. A couple of our kids and my husband have a sore in their mouth and a few days ago had some other mild symptoms going on so at this point, his doctor and I think the dosing issues are a result of his body fighting off a virus. I really hope that's the case because that would make sense and would also give him the freedom we were hoping for all along.
His doctor said that he WILL get to that point eventually, but that it will take 1-2 years (what???!) before he can eat peanuts/peanut butter outside of his lifelong maintenance dosing.
On the up side of this, all along, the reason we chose to do OIT was to help prevent our son from dying from an anaphylactic reaction to peanuts; not to give him unlimited access to peanut butter cups. That was just a bonus. And, thank the Lord, that is what we have accomplished. I could not be more grateful to the Lord for getting us to this point and for leading us to the most amazing doctor on the planet.
The fact that our son would break out in hives from sitting at a table with peanut M&Ms to eating 20 peanuts a day is HUGE and incredibly worth every bump in the road we've hit.
Yes, I totally wish we could be like some other families I know of that have breezed through this program without a single reaction (for realz??? Yep.) but, the thing to focus on is, look how far he's come!
We no longer have to worry about an airborne reaction, people touching peanuts and then touching him and having a reaction and in a few short weeks, we won't have to worry about him eating something made on equipment with peanuts.
We still have to tackle his almond allergy so he may not be free to eat everything that's made on equipment with peanuts or tree nuts. There is, however, a chance that by treating his peanut allergy, his body will have also overcome the almond allergy simultaneously. That would be a tremendous blessing if we didn't have to treat any other nuts!
He will have some more blood work done in the next couple of weeks to check for other nut allergies. If he is allergic, he will start with an almond challenge to determine what level he will start on. I'm not being pessimistic about his almond allergy but I feel that, mentally, I just need to keep my head down and get through this and not think too far ahead to being done with OIT. If we find out that he is not allergic to almonds or any other nuts for that matter, then hallelujah, let's have a party with a cupcake made on equipment with peanuts and tree nuts. I'm buying.
So, while I am definitely disappointed my pumpkin won't have quite as much freedom as we thought he would, he is still miles and miles ahead of where he was a little under a year ago.
If you're considering OIT, I completely understand the fear that goes into making a decision like this, but when we first started, I had to remind myself that no one has died from OIT; tragically, they have died from attempting to avoid the dangerous allergen.
I would love some prayer warriors backing us up as we climb this last part of the mountain for this particular allergen, for prayers that the other nut allergies are gone and that we can go to once a day dosing without issues three months after he finishes the program. Thank you, friends!
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