Level 3! Here we go again.
It feels like we've seen our allergist more in the last 4 months than we have in the last 4 years but things are happening! We had another followup appointment for Brian on Thursday this week and at the same time, Carter was going to level up in his desensitization trial.
Let's talk about Brian first! From being Gluten free since the middle of February, Brian's bloodwork numbers were cut in half! The antibodies covering his stomach lining are down to 1/4 of what they were before and overall everything is looking way better. So, GREAT news. Bad news.. he needs to stay gluten free. Clearly, gluten is causing major problems. He did accidently have gluten a week and a half ago and then, THAT SAME NIGHT, around 10pm, his arms started getting hives! It's crazy to me! Yikes! So, for the next 6 months he's 100% gluten free and then does more bloodwork in October. This is a big learning curve but we're figuring it out.
Now for Carter. This appointment was making me nervous leading up to it. Before they re-did his skin test or bumped him up a level in the trial they asked me THREE times if I had his Epi Pen on me and what the expiry date was. This appointment was a big deal because we only JUST went into level 2 in the middle of February so it hasn't been that long.
Skin test and vitals go first.
This desensitization trial is like the expression "Playing with Fire". If Carter doesn't move up levels fast enough, his body will never change with how he currently cannot tollerate peanuts BUT if we move too fast through the levels and he gets even ONE reaction from too much exposure then everything we've worked on for the last 8 years is down the drain. We would start all over again at square one. I can't even express how devastating that would be so upping these levels requires a HUGE amount of trust in our allergist and Carter's body.
"Level 3" referres to the size of micro dosing he is getting. Here is the tiny marker.
Carter's body IS improving! It is SO promissing even though he is still anaphalactic. These micro-doses are equivelant to having something that "May Contain Peanut" in it. Level three, here we go!
Once Carter licks the micro dose, we wait. We wait for an hour and make sure there is ZERO reaction. He brings his switch to distract him from how crazy itchy the hives get on his poor arms.
At one point he said his tongue was itchy but the moment we gave him some water it went away so we just kept a close eye on him and everything went great!
I AM SO PROUD OF CARTER!!!! These trials are HARD! There is so much riding on these trials. He takes tree nuts and probiotics every dang day! (Except! I did ask if we can lower his tree nut dosing to once a week instead of every day now and the Dr. said YES!!!! HOOORAY!!!!) Carter is a trooper! I am SO glad that this appointment went well because I was a nervous wreck about it! I love you so much Carter, I am so proud of all your hard work! One day, I hope you're not allergic to peanuts, you deserve that!
Let's talk about Brian first! From being Gluten free since the middle of February, Brian's bloodwork numbers were cut in half! The antibodies covering his stomach lining are down to 1/4 of what they were before and overall everything is looking way better. So, GREAT news. Bad news.. he needs to stay gluten free. Clearly, gluten is causing major problems. He did accidently have gluten a week and a half ago and then, THAT SAME NIGHT, around 10pm, his arms started getting hives! It's crazy to me! Yikes! So, for the next 6 months he's 100% gluten free and then does more bloodwork in October. This is a big learning curve but we're figuring it out.
Now for Carter. This appointment was making me nervous leading up to it. Before they re-did his skin test or bumped him up a level in the trial they asked me THREE times if I had his Epi Pen on me and what the expiry date was. This appointment was a big deal because we only JUST went into level 2 in the middle of February so it hasn't been that long.
Skin test and vitals go first.
"Level 3" referres to the size of micro dosing he is getting. Here is the tiny marker.
I AM SO PROUD OF CARTER!!!! These trials are HARD! There is so much riding on these trials. He takes tree nuts and probiotics every dang day! (Except! I did ask if we can lower his tree nut dosing to once a week instead of every day now and the Dr. said YES!!!! HOOORAY!!!!) Carter is a trooper! I am SO glad that this appointment went well because I was a nervous wreck about it! I love you so much Carter, I am so proud of all your hard work! One day, I hope you're not allergic to peanuts, you deserve that!