First reaction?

Mason had what we think was his first reaction this weekend. He had been tolerating the 6ml dose just fine. Then yesterday, Saturday, we went up to the 7ml dose. We waited for our rest period. He had a big dinner and went on the trampoline with his little bro and cousin. We didn't realize how much he ate and within a few minutes he wasn't feeling well. He complained of his tummy hurting.
Some time went by with no improvement and we chalked it up to jumping on the trampoline after eating too much.
5 hours had passed since his dose and he threw up! Then the throwing up would continue on and off for 4 hours into the night. Long after we went to bed we would keep waking up to be with him.
This morning he woke up fine, just really hungry. He seemed to improve during the day and then it was dose time. I gave him the 7ml and within the hour he didn't feel good. I decided to text our doctor and catch him up on last night and now today. Was last night really a reaction to his dose or was it really eating too much and jumping? Was he not feeling well today because of his dose or was it because he didn't eat enough today to handle his dose? It's such a cycle and guessing game. He decided to play it safe and back up off the dosage amount a little bit. He told me to give Mason Benadryl today and again tomorrow before his dose. We are going down to 3ml and working our way back to 6ml where he was good before. His normal 2 week appointment this week is being rescheduled for next week.  (Also, thankful he didn't go into anaphylaxis.)
So far today and tonight, no throwing up, so hopefully we all get some sleep tonight!

This week...

We will be up-dosing on our own at home this week. We go for appointments every 2 weeks but at our last appointment, the dr said to not wait as long as 2 weeks but to do it at home after 1 week. To be clear, we are still dosing every single day at home, just increasing on our own instead of the dr doing that part. We will still go to the dr next week and updose there again. So we are going from 5ml to 7ml by the end of this week. Not a major change so we are good with it. Wish us luck!

Today was Big!

In the allergy world, today was big. No, it was major. These last 2 weeks, we have been at a dose of 6mg of wheat in 5ml of water. We tested for 12mg in 5ml today and he did great at the end of the hour. We snacked and did our homework as usual. (Shoutout to his 3rd grade teacher!) 😉

See...not just devices!

So brave

Charmay, she keeps me sane. Well, I use this term loosely.

12mg in 5ml

We discussed what maintenance vs eating freely would look like for Mason. Maintenance is just the amount of allergen you would need to consume daily to keep from having a reaction (keeping in mind he will always be allergic, just able to tolerate it.) Eating freely means he can eat whatever he wants on top of his maintenance dose of said allergen. He let us know that this would be attainable for Mason!  (There are some people that can only get as far as a maintenance dose and happy with that and I wanted to make sure he knew we were hoping for more than just that.) He talked about how well he has done this month and how he has no other food allergies and asked if we could stay a little longer because he wanted to double his dose again and see. We were a little surprised when he came in with 25mg in 5ml to take right then and there. Ok, surprised is an understatement. My heart jumped into my throat and I felt a little weak but I put my trust in this doctor so here we go. Mason looked worried and questioned if we really should be having another dose so soon! Doctor mixed this one up himself and administered rather than the nurse who usually does it. He then gave him another 5ml. Then another 5ml. So yes, 10 (threshold!) On top of the 5 he had earlier. He told us that the first dose was already absorbed and gone, so not to worry. But ok, sure bring on the poison. 😳 When I tell you I really needed to sit down, wow. Patrick and I were texting like crazy and he said "It's like that feeling just before you crest the hill on the rollercoaster." Mason reluctantly took both down and went back to playing on his device leaving me to panic alone. The nurse came in to discuss and saw the look on my face. She reassured me that he does this sometimes with certain patients. He has been doing this for a while and based on toleration in timing, can really gauge well if the patient can tolerate this. He did amazingly well! We left shortly before the 30 minutes were up as cleared by doc and went home. This mixture looks like a milkshake as compared to the others. No wonder I almost had a heart attack, it was quadruple the previous dose. This can only lead me to believe we will be doing 50 next visit. Solid food starts at 100 or 150 mg. So stay tuned....

I'll just call this 😳😬

Round 2

On Wednesday this week, we went for our 2 week updose. Support from little bro that day, or maybe he was just there for the snacks. No, actually, I had to bring both kids, making for an interesting 1 hour appointment in this small room, but I'll pretend the little guy was there for support. Tearing into the snacks commenced almost immediately, which is what the doctor wants anyway. A full belly, ready to work and receive the allergen so it can process it correctly.

Mason received his dose, which is now double the amount of flour. 6mg of flour per 5ml of water is the new dose. He handled it well! No reaction, no hive, felt fine. 1 hour later, his vitals were checked and we were sent home with the new dose. Here's hoping there is nothing to report until the next 2 week appointment!
I was so happy for him I baked a dessert and declared we should do this every 2 weeks after his appointment to have a little mini-celebration as we get closer to the end. Corny, maybe...delicious, yes!

Have a goodnight 😴

The 2 weeks after

Well, there is almost nothing to report here, which is a good thing. Mason had a tiny hive the first day of receiving his dose at home. I texted the doctor to let him know and he said it was okay, no need to adjust the dose or do anything. We never saw any other side effects in the 2 weeks that would follow. We traveled to Orlando for winter break and were given a "dry bottle" to take with us. This means a bottle with the flour in it and we just add the water when we get where we're going, since the bottle needs to be refrigerated. That definitely made it easier to travel with. Timing the dose each day is a habit at home, we normally do it at 3pm, right after school so I can keep an eye on him and I know he will be snacking and doing homework. There needs to be 1-1.5 hours of rest after a dose. So if it's an activity day, we do it after that around dinner time. When traveling, we had to move the times each day around. For example, the day we went to Animal Kingdom, there would be no way to refrigerate either his syringe already filled or even the bottle. No, I wouldn't be carrying a cooler around with me. So we did it in the morning before we left (knowing there would be 30 minutes to drive there, the team, security line etc. plenty of downtime.) He did great during the trip, and happy to report nothing happened to the little glass bottle. We resumed our normal schedule once we returned home.

At Animal Kingdom about 2 hours after a dose

Go time! Are we really doing this?

So, we really are going through with this. I have a couple of friends doing this with their kids and am feeling inspired. I've done the research. We (the parents) have had the discussions. We have asked Mason if he's ready to do this. It is such a weird concept to all of a sudden be putting this "poison" into his mouth that we have spent almost 9 years avoiding. Having emergency interactions with this allergen and now we are saying "here, drink this!" Takes some time to wrap your mind around, I know.

So here is what happens in that first appointment: Mason received a concoction of his allergen (wheat, so some flour) mixed in water, a specific solution. He was given this by syringe in his mouth every 15 minutes. After the 15 minutes was up, vitals and skin were checked, asked questions about how he felt etc. Moved on to the next dose which was slightly more. We went from 1ml to 5ml and it took us 3 hours instead of 4 because it went very smoothly for him. The last dose of 5ml, we waited an hour instead of 15 min, since it was the most and that was the goal ml for the day. So, in total he had 11ml of this. We were sent home with the glass jar and syringe to dose him once a day at the 5ml for 2 weeks. To be even more specific, there is 3mg of wheat flour in every 5ml dose of water. Every 2 weeks we will go back and get "updosed" wait an hour (wont have to do the every 15 minute thing again, that was just to find his threshold.) Then go home with his new dose to do everyday at home for those 2 weeks and so on. At some point it will switch from this liquid solution to solids. The whole thing should take about 9-12mo and he should be able to eat freely. He will have to maintain and eat it everyday (no paleo, keto or whole30 for this guy 😂.)

They will tell you to bring lots of things to pass the time at this first appointment. We did homework, ate snacks and played on devices. Hey, whatever works.

The dose is just the 5ml syringe seen here. For now anyway.

He was a little nervous about putting this concoction into his body that we have spent so long teaching him to avoid because it is literally life and death for him since he goes into anaphylaxis. We all were/are. Going to bed that night was a little scary. There may be setbacks along the way if he reacts at a certain dose, but we will take that as it comes. If he is sick at all, we can't updose because his immune system is compromised. Again, we will cross that bridge as we get there. The goal here is to not fear for his life and be able to live a normal life as he gets older. It's all scary, fascinating and exciting but we are cautiously optimistic.❤

The Decision

Having a food allergy, as some of you know, can be daunting when in social situations or even sending your kid to school. Will he ride the bus, will the bus driver know how to save his life? What forms do I need? Should he self-carry? Separate treats at school for parties, how do I make this work? Where will these 3 sets of epi-pens be placed at school? Planning trips and even outings with family/friends is tricky, where and what can he eat? I would have to bring a stash just in case. It's a lot. 

When Mason was in preschool, he didn't mind being the different kid but as he got older and further into elementary school, this would change. He would start to turn away his different treats at a birthday party, he would rather eat nothing. There is also this fear everytime my phone rings and its the school. Is he having a reaction? Did he accidentally eat something that wasn't gluten free?

We started hearing about OIT  over the last few years, (but it was always for peanut allergy.) This is a way to desensitize one's body to their allergen, so it doesn't react upon contact. Every summer I would ask our doctor when we could start and if this would work for us. It just wasn't available to us at this allergy practice, there were so many hoops to jump through to get a practice with almost 30 doctors in it, on board. Last year, I heard about another doctor in the area doing OIT for wheat (solo dr.) The husband and I mulled it over and second-guessed leaving our beloved doctor but eventually decided to pull the trigger.