Kind of. Not really. Answers
As confusing as this title is, it almost makes more sense then the actual diagnosis. Brian got in today to see our allergist. YAY!! Such a blessing and miracle we didnt have to wait 3-6 months for a phone call. Our family Doctor worked her family doctor magic and Brian got in today!. He had an appointment at 8:30 this morning. Because of Covid, I don't think I was really suppose to go with him BUT they offered to give Brian Carter's most recent results as well and I wanted to be there for these myself (ok, fine, Brian too) so we decided I would just go and not ask and it worked out.
We got in to testing quick. We were both feeling anxious and nervous and excited to hopfully get some answers.
They tested Brian for literally everything. All sorts of food. Fruit, wheat, dairy, eggs... allllll the things. They also tested him for all the elements. Grass, pollen etc.
Best case scenario, we find the one thing that he's allergic to and avoid it for the rest of time.
Unfortunantly that didn't happen. Although Brian is allergic to grass and pollen, Brian is NOT allergic to one single food item. This is where things get complicated. I trust our allergist so much. He has proven time and time again his expertise with Carter and I know he will leave no stone unturned with Brian.
We met with him for two hours. We talked and talked. Every single possible thing that might have created this scary reaction.
Brian has had arthritis since he was a young teenager. We now have reason to believe that this reaction had to do with his body internally having an autoimmune response. Even though he has no food allergy, it's possible that one thing he may have eaten may have just been the tipping point for such a reaction.
Wow. Ok. That's a lot to process.
Brian is being sent for a good amount of bloodwork to look for all autoimmune markers to see if we can start to narrow this down.
As of right now, the only information we have is that it is likely an autoimmune reaction from internal inflamation (something we can't see or know when its happening...scary.). We now know it is not rooted in a food reaction so that's good, I guess.
He did send us home with medication that is basically Benedryl but instead of taking 15 minutes to get into your system to help, it's pretty immediate so hopefully if Brian feels it starting, he can take this medication to maybe help it not go into the anaphalactic stage otherwise, his Epi Pen will be used again.
I wish we had more answers. I never knew I'd ever be wishing for a clear cut allergy, like, blackberries, peanuts.. anything.
We will continue to dig with the best there is and work our way to a solution so we aren't living in fear forever.
NOW! Pivoting to Carter. Sweet Carter, he had worked SO HARD for so many years to reach this peanut desensitization trial. We have had high hopes. Especially now.
We got good and bad news for Carter today. The good news is that ITS WORKING! He can now safely move into the next phase of the trial. He will start this on February 18th in their office with all the right medical staff around to help facilitate the start of this next dosage and have the support needed should his body react. It will be a nerve wracking and exciting day!
Now, the bad news. Although it is working, he is still totally anaphalactic to peanuts. His numbers didn't change very much and what his body has done in a year, most bodies can do in 6 months so his body is changing at a turtle pace basically. This doesn't necessarily mean its not going to work it just means something else is going on.
Carter's IgE SUBCLASS numbers are really low. For years this suggested that Carter had a food intollerance. So a couple of years ago we cut out eggs completely for a year. We have gone down many intollerance paths trying to find the answer but the numbers have stayed relatively consistent and low. He has been on a live daily probiotic for YEARS (this poor boy will look at yogurt and puke when he's an adult, Im sure of it). This time his levels were very close to the last bloodwork that was done 6 months ago. Still low.
However because of Brian's reaction, these numbers might actually be a marker for an autoimmune issue with Carter so Brian is getting his IgE SUBCLASS levels tested too to see if they're similar to Carter's and then we will go for there. If Brian's IgE SUBCLASS levels are low, there would be a red flag for Carter and autoimmune issue.
Obviously, this is hard for us to hear. The reality of us passing on our hardest trials, like Brian's autoimmune desease or my mental health issues, is the scariest part of having children. Carter's low IgE SUBCLASS levels do not mean that he does have an autoimmune desease but its just a reg flag that we will continue to explore if we need to once Brian gets his bloodwork results back.
**Everything to this point is a theory. Nothing has been proven yet. We are praying for Carter and for Brian. They both go back on February 18th to talk about Brian's results and Carter's next phase of the trial.
So, summary!
Brian has NO food allergy. It's likely autoimmune. We will dig deeper for more answers in the coming months, keep an epi pen close by and try to keep his body under control.. even though you can't control it. K, cool. Im not sure Im feeling any less worried.
Carter is moving up to the next phase of his peanut desensitization trial. Hip Hip Hooray! He'e got a red flag for an autoimmine desease but nothing is set in stone yet. One thing at a time. Also not sure Im feeling any less worried.
All we can do now is hope and pray and be widly consience of everything happening with thir bodies.
We got in to testing quick. We were both feeling anxious and nervous and excited to hopfully get some answers.
They tested Brian for literally everything. All sorts of food. Fruit, wheat, dairy, eggs... allllll the things. They also tested him for all the elements. Grass, pollen etc.
Unfortunantly that didn't happen. Although Brian is allergic to grass and pollen, Brian is NOT allergic to one single food item. This is where things get complicated. I trust our allergist so much. He has proven time and time again his expertise with Carter and I know he will leave no stone unturned with Brian.
We met with him for two hours. We talked and talked. Every single possible thing that might have created this scary reaction.
Brian has had arthritis since he was a young teenager. We now have reason to believe that this reaction had to do with his body internally having an autoimmune response. Even though he has no food allergy, it's possible that one thing he may have eaten may have just been the tipping point for such a reaction.
Wow. Ok. That's a lot to process.
Brian is being sent for a good amount of bloodwork to look for all autoimmune markers to see if we can start to narrow this down.
As of right now, the only information we have is that it is likely an autoimmune reaction from internal inflamation (something we can't see or know when its happening...scary.). We now know it is not rooted in a food reaction so that's good, I guess.
He did send us home with medication that is basically Benedryl but instead of taking 15 minutes to get into your system to help, it's pretty immediate so hopefully if Brian feels it starting, he can take this medication to maybe help it not go into the anaphalactic stage otherwise, his Epi Pen will be used again.
I wish we had more answers. I never knew I'd ever be wishing for a clear cut allergy, like, blackberries, peanuts.. anything.
We will continue to dig with the best there is and work our way to a solution so we aren't living in fear forever.
NOW! Pivoting to Carter. Sweet Carter, he had worked SO HARD for so many years to reach this peanut desensitization trial. We have had high hopes. Especially now.
Now, the bad news. Although it is working, he is still totally anaphalactic to peanuts. His numbers didn't change very much and what his body has done in a year, most bodies can do in 6 months so his body is changing at a turtle pace basically. This doesn't necessarily mean its not going to work it just means something else is going on.
Carter's IgE SUBCLASS numbers are really low. For years this suggested that Carter had a food intollerance. So a couple of years ago we cut out eggs completely for a year. We have gone down many intollerance paths trying to find the answer but the numbers have stayed relatively consistent and low. He has been on a live daily probiotic for YEARS (this poor boy will look at yogurt and puke when he's an adult, Im sure of it). This time his levels were very close to the last bloodwork that was done 6 months ago. Still low.
However because of Brian's reaction, these numbers might actually be a marker for an autoimmune issue with Carter so Brian is getting his IgE SUBCLASS levels tested too to see if they're similar to Carter's and then we will go for there. If Brian's IgE SUBCLASS levels are low, there would be a red flag for Carter and autoimmune issue.
Obviously, this is hard for us to hear. The reality of us passing on our hardest trials, like Brian's autoimmune desease or my mental health issues, is the scariest part of having children. Carter's low IgE SUBCLASS levels do not mean that he does have an autoimmune desease but its just a reg flag that we will continue to explore if we need to once Brian gets his bloodwork results back.
**Everything to this point is a theory. Nothing has been proven yet. We are praying for Carter and for Brian. They both go back on February 18th to talk about Brian's results and Carter's next phase of the trial.
So, summary!
Brian has NO food allergy. It's likely autoimmune. We will dig deeper for more answers in the coming months, keep an epi pen close by and try to keep his body under control.. even though you can't control it. K, cool. Im not sure Im feeling any less worried.
Carter is moving up to the next phase of his peanut desensitization trial. Hip Hip Hooray! He'e got a red flag for an autoimmine desease but nothing is set in stone yet. One thing at a time. Also not sure Im feeling any less worried.
All we can do now is hope and pray and be widly consience of everything happening with thir bodies.