Graduation Day...A Surprise!

This will probably be the last blog entry for a while but wanted to update everyone on how the final appointment went. It was a pretty big deal in our lives.
I took Mason in for our usual OIT appointment last Wednesday and upon arrival, the nurse checking all of his vitals and looking at his progress in the chart said that he may be at the end because his dose is so large. She left to check with Dr. A to see what the next steps would be. I will never forget her name now. Her name was Jill. Jill would be the one to walk back into the room with entire pack of Goldfish (the snack size of 28g) and say Congratulations, you are graduating today! My jaw must have dropped to the floor and Mason looked at me in disbelief. I couldnt believe it and asked How? How are we done already and What now? Dr. A came in to discuss while Mason started eating his dose. I cried happy tears and called Patrick. I hugged the necks of everyone there and they were so happy for us. Yes, I was that mom.
So some of the big points I'll cover since I'm getting a lot of questions from friends and family. I'll address here:

-We are no longer measuring/weighing the amounts. We are to eyeball something similar. He has had a piece of bread as his dose for about 2 weeks now. We can stay at that amount or increase a little. We are to use that amount as it translates to other things. A cupcake, half a doughnut, a snack pack of Goldfish or teddy grahams etc. Small bowl of pasta. Nothing too outlandish.
-This is now his dose. He can dose with whatever he wants but has to have something everyday. He is free to try anything.
-He can dose multiple times a day as long as there are 3-4 hours in between (because this signals starting over to the body, it has already processed the allergen.) Something at breakfast, something at lunch or snack (if there is a birthday at school now, he can have whatever it is.) And something in the evening.
-He doesn't have that hour long rest period after each dose, it will lessen over time until he won't need one at all. Right now we are sticking with no rigorous activity for one hour after consuming wheat but he can play catch outside, ride bike, no running marathons or trampoline right after.
-We can increase the amount about every week or every other week, up to us and our comfort level. Hard to know without measuring but will eyeball.
-Mason will be having bloodwork done to check his IgE levels (his allergy level) to wheat and see how or if it came down in the year he has been doing this. Some people it comes down a little, some come way down and some don't change. Dr. just wants a baseline for after OIT since we have one from before we started. Even if his number shows still super allergic (100+ or what's known as a class 6), it's ok. He is desensitized and tolerated eating it without reaction.
-A letter is being sent to the school to adjust measures in place regarding food and treats for him there. I will be involved in knowing what he will have when still. At least through the remainder of 4th grade. I dont expect him to have much there but he has the green light to not be excluded from another child's birthday celebration anymore, which is huge.
-He will still self carry an epi-pen in his backpack and have 1 at school and at home.
-I have Dr. cell phone number and can text anytime he says. We will go back and see him for a 1 yr follow.

I want to thank you all for your continued support for our family during all of this. Thank you for following along. Thank you for rooting for us. It was so nice to take you on this journey with us. Means a lot.

Where we first started. 3mg. 

Ending at 28,000mg. 

Dr. Agrawal graduation pic

20,000mg How are we here already?!

It's been a month since our last appointment. We've been dosing at home daily like usual. Increasing each week by 500mg. So we left off at 13,000mg and by today were at 15,000mg.
So we went to our OIT appointment and Dr. A bumped Mason to 20,000mg!!! That's a huge jump from 15k.
He tolerated just fine.
I decided to let the dr. know about the upcoming surgery Mason would be undergoing next week (to remove a lump behind his eye, more on this another time, but he's going to be in great hands and fine) so he could be in the loop and tell us how OIT would be impacted.
Dr. A told me to updose him to 22k or 23k on Sunday and to come down to around 5k on surgery day and the day after and go back up. The following Sunday we will go up another 2k.
Back to the dr. in 2 weeks this time.

Big jump!!

It's been a month since our last appointment. We increased by 500mg each week and did our daily doses at home as usual. We left off at 10,500mg. When we went in on Wednesday, Dr. A bumped us up to 13,000mg of wheat. We have never made a leap like that yet. It was a little bit unnerving but Mason tackled it like a champ.
The nurse broke up his dose into 2 parts. One really big dose of Goldfish and then 10 minutes later, he had the rest, a smaller dose. They wanted to give his body time to adjust between the 2. He tolerated just fine.
I decided to ask Dr. A what our end goal in mg is. When do we stop? He let me know that once Mason reached around 30-33,000ish mg that is a whole slice of bread and that is our goal. Once he is eating that we are in what they call maintenance. We aren't going in for check ins or updoses every few weeks. We maintain the dose and can gradually go up (still under his direction via text.)
We would start out slow but really at that point he can be considered "free eating." He won't be excluded at school anymore with his own special cupcake for a birthday. He can have the treat other kids are having. He can have several doses of wheat a day in whatever form he wants without a reaction.
Right at that moment, another patient walked by, an adult male. Dr. A gestured to him and said he was also there for wheat and just checking in for his annual appointment. He was at over 100mg of wheat and not restricted in any way from his allergen. THAT is our goal. We will get there!
As for now, we are focused on getting to maintenance. This would mean Mason could eat regular birthday cake for his big 10 birthday in April.
Stay tuned and thanks for following!

A little shy

Paying attention to what time he took his dose

At home with just about half a slice of whole wheat bread with peanut butter

Finally trying regular bread!

We went into the office on Wednesdsy afternoon. Dr. A bumped us up to 9,000mg of wheat. This is about 14 Goldfish. I let his nurse know we wanted to try regular bread this week at home to dose each night. He checked with the Dr. and gave us the green light. We will go back and forth between regular white bread and whole wheat. He needs to get exposed to wheat in as many forms as possible. (We tried regular pretzels each night for his dose last week.)
Mason tolerated the updose and pressure checked and we were released. We won't be returning to the office for 4 more weeks and I will updose him each week by 500mg, possibly more. The Dr. left early that afternoon and the nurse told us to double check with him on amount, so I'll text him in a couple of days for plans for next week.
The first night of bread (roughly half a slice of Nature's Own sandwich bread,) Mason ate it plain. He just wanted to taste it by itself first. After all, this would be the FIRST TIME EVER that this child has had regular bread. He's had gluten free bread since a baby! Tonight, he had it with peanut butter. He isn't crazy about it, prefers the gluten free bread still!
Thanks for following along.

Not a huge jump

We went into the office on 10/23 for our updose appointment. Dr. A wasn't there and his NP was seeing all of the OIT patients. We knew beforehand that this would be the case. Brandy is excellent but was a little conservative with the dose. Mason had been eating 5700mg of wheat at home for the last week and she bumped him up to 6300mg. I totally understand her reasoning for doing so. We were fine with it and he did great so we were on our way. She told us to increase by 500mg each week at home until we come back, that is what Dr. A would say. So will bump to 6800mg on Wednesday here at home.

When will he eat bread?

Today we went in for an updose appointment in the office. Dr. A. brought us up to 4,800mg. That is about 8 Goldfish. I asked him when we would switch to a slice of bread and he let us know that's about 50g and we are at about 5 now. So we have a little ways to go, but it really does multiply fast. The reason why I asked was only because we were wondering how long this Goldfish/Cheez It business goes on for. Will we be at 400 goldfish one day?! 😆 I mean, come on, it would be easier to have a piece of toast or half of a muffin or something.
So that led us into talking about dosing with other things for now if we want. Mason was given the green light to try dosing with pieces of regular bread, pasta, pretzels, a cookie etc. So that's kind of fun for him. A little scary, but fun.
So we will continue at this dose everyday for a week and then next week I will updose him to 5,500mg and the week after 5,800mg. The week after that we go back to the office.
The pics below, he is making a weird face. A little bit of nerves, a little bit of he put too much in his mouth, and a little bit of mom please stop taking pictures!
Thanks for following along!

3500mg is a mouthful!

Once again Mason woke up excited to have this appointment after school.We went into the office (Wed) for our updose. Dr. A. brought us up to 3500mg of wheat. Roughly 6.5 Goldfish. He shoved it all in like medicine! I reminded him he can eat it like a snack now but maybe he does think of it as medicine and doesn't like the taste as much as he lets on. He is also really good at timing himself for the 1 hour rest period here and at home.
I asked the nurse at what mg do we graduate from OIT. She stated that for peanut its 7000mg but for wheat they go a little higher. We seem to be climbing at a steady and rapid rate so I wanted to check in with that. Basically every patient is different and we will have to see what his body does when we get to 7000+. We may end up done with the program a little sooner than the 1yr anticipated, which would be Feb.
We did our homework during the visit and ate all the snacks per usual and we were on our way in an hour after checking vitals. Once we got home, Mason was a little itchy on his back but there weren't any hives or anything there and the feeling went away within a few minutes.
Someone asked me this week if we just give him as many goldfish/cheez its as the Dr says or how do we know at home? Answer: We were given a tiny kitchen scale at our first appointment and I measure each dose out for the week. Pic below. He eats his dose with dinner every night. Thanks for following.

No big deal! It's just 2500mg of wheat!

It had been 5 weeks since we went into the office for an updose. Why 5 weeks you ask? Because everyone and their mama is doing OIT and they are packed. So we do it at home and text the dr if we need to. We had updosed by 100mg each week and continuing on everyday at home. (Went from 1300mg to 1700mg) So as we drove to the doctor, Mason asked me what I thought they would bump him up to. He said he was so excited to go to the dr. (Yes, a child is excited to go to the dr when it means getting closer to our goal of overcoming this. 😆) We were at 1700mg all last week so his guess was 1800mg. I said no way, in the office they always go really high and make a big leap that scares the crap out of us! They save the little updoses for us to do in between at home. Well, I was right! 2500mg of wheat would be the new dose for this week. Our nurse said its customary to give this dose in 2 servings split in half, and given 10 minutes apart. Vitals checked after each one. The length of observation would be still be 1 whole hour from the first serving. So he tolerated this like a champ. We won't have to do that part at home each day. Mason will eat it all at one time. (Almost 3 Cheez Its. If Goldfish about 4.)
Looking back to where we started in Feb with 3mg of wheat particles in a syringe to 2500mg and eating crackers is just WILD to us! Thanks for following.

System at home. He eats this everyday with dinner.

1300mg Wow!

Big day today for Mason! 4 weeks ago we were at 500mg, then each week increased by 100mg to land at 800mg of wheat this week. Today went into the office and are now at 1300mg of wheat! My heart may have skipped a beat and we both looked at each other in disbelief but then trucked on. And so it continues...increasing 100mg each week on our own at home. (Incase you ever wanted to know what a Cheese It weighs, plus a little corner.)
We go back in 4 to 5 weeks.
I had an interesting conversation with the nurse, he was asking about Mason's reactions since birth , (they have his records but just wanted a timeline of just those dates/years.) So we were chatting and I told him the difference between then and now. He has had 1 reaction since starting OIT (accidental ingestion not from his dose) and it was because he ate a brownie he thought was gluten free at a playdate. All that happened was he threw up instead of anaphylaxis. The nurse explained that during OIT, IGE (Immunoglobulin E) levels are the reaction and IGG levels are what is protecting you from the reaction and what we are building up. So what we saw was the result of OIT in action. Very cool! Its working.

Great visit!

Mason was updosed to 500mg! That's almost an entire Goldfish or Cheese It. He says he is so excited. We are going to the beach in 2 weeks so won't return for an appointment for 4 weeks
 I will be updosing him on our own at home by 75mg to 100mg each week until then.
While we were there, I asked about having Mason skin-tested (and bloodwork done) in August to check enviro allergies. We have been going for shots since he was 4. We are now at the end of the road for 5 year treatment but I would prefer not to go back to our previous allergist. I want to just keep everything with Dr. Agrawal here. So they assured me he would do it all whenever we wanted. Mason should only have 1 enviro shot left. Anyway...stay tuned till next time. I'll report anything newsworthy over these next 4 weeks!

4 months in!

We had our appointment for updosing on Wednesday and it went great! We are now up to 325mg of wheat. Also we decided to switch to Cheese-Its for something new and to keep it interesting. Plus, it's a good idea to introduce the body to different sources of wheat so it doesnt get used to just the one item. Turns out they are easier for me to measure out for Mason too and they taste better than Goldfish. We may do pretzels next. He tolerated the dose just fine and did well with the next dose at home the next day. Back to the dr in 2 weeks!

Sailing right along!

Not a whole lot to report today but I guess that's better than a whole lot to report. Today Mason was dosed with 200mg of wheat, up from our 125mg dose. He did great! For some reason he isn't as nervous in the office as he is at home dosing everyday. He is always scared he will react. It builds up in his head and he worries and stalls but gets it down. He doesn't do this in the office! They say its anxiety. Imagine that!
We spent our time reading for his daily reading homework but regular homework is over for the rest of the year. This means devices and then arguing kids. We survived that part...barely. So there are lots of pics because boredom.

Anyway, Mason's doctor will be out of the office for 3 weeks (vacay to Switzerland) and is booked the week he returns, so we won't return for 4 weeks. That means updosing on our own every 10 days or so. We will stay at this 200mg, then up to 225mg and finally to 250mg before we return in mid-June. Hoping for an uneventful month until then. Thanks for following!

We officially started solids!

Do you know what 1 Goldfish weighs? 630mg! Today we were bumped to 100mg which is time to start solids and ditch that awful wheat infused water solution. The nurse walked in and broke up 1 goldfish and weighed it. Mason ate a fraction of 1 goldfish! This sounds so silly but it's amazing. He was only slightly nervous and asked the nurse if he would throw up after he ate it, to which she replied nope! Then it was down the hatch!
Patrick and Carter are here too because I was a nervous wreck. This is the very food that has sent him into anaphylaxis.
We can use either Cheeze-Its or Goldfish at home and are going home with a kitchen scale and pill organizer so I can dose out his days all at one time. He is doing great so far, being monitored by the Dr.
Incase anyone is wondering, Carter is ecstatic that we can have any kind of cheese cracker in the house now. 😂.
So dosing this way is going to be so much easier. I dont have to worry about refrigeration or transporting his dose to places if we wont be home.
Will be back in the office in 3 weeks to double our dose if all goes well!