About 6 weeks ago, I finally started dosing for peanuts! And just this past week, I went into the clinic for an updose.
For those of you who are new to my journey, you can read my story HERE. If you aren't familiar with the Tolerance Induction program - the treatment program I am going through - you can read about it HERE.
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Now let me clarify: I have been updosing weekly at home as usual, but this specific updose amount is done at the clinic. I honestly have no idea why it's done this way, but the updose wasn't the smoothest experience so maybe there is a reason (or maybe it's just me)?
I have dosed for all of the tree nuts including almonds, hazelnuts, macadamia, pistachios, cashews, pecans, walnuts, etc. Each tree nut took between 6-8 weeks to dose for, with updoses done at home every week. Once I was finished with all the home dosing, I would go into the clinic, eat a large amount as a final challenge, and then be considered tolerant and able to freely eat that tree nut.
Peanut has been very different though. For the tree nuts, the starting amount was always small, but it consisted of little crumbs of the tree nut. Peanut on the other hand started at such a small dose that it came in a vial mixed with saline solution. I started my peanut dose at just 1mg and over 6 weeks with weekly updosing at home, I got up to 36mg. For reference, one full peanut is on average 300mg.
I dosed each amount for 7 full days, except for the 36mg, which I dosed for only 4 days. This was because I had a stomach virus and had to skip a couple of doses. When I dosed for the tree nuts, there were many instances where I didn't dose the last amount for a full 7 days, but it never seemed to be an issue during any of my challenges. So I did not see it as a big deal this time either.
When I arrived at the clinic, there was a vial with 80mg of peanut waiting for me. After this challenge, I would take home another 6 weeks worth of vials starting from 70mg the first week and ending at 170mg before going in for the next updose (and of course all of the other amounts in between - it's not a straight jump from 70mg to 170mg).
Immediately after ingesting the 80mg of peanut, my tongue got slightly itchy. They had me eat a starburst and it did help it resolve for the most part. Thus, I then ran in the exercise room for 5 full minutes as usual in order to ensure that my body would not react. I was actually fine while running. I was talking to one of the nurses the whole time.
After running, I returned to my patient room and was hooked back up to the vitals machine, which showed completely normal vitals (for someone who just ran). Except shortly after I sat down, the top of my throat felt a bit tight and the itchiness slightly returned. Dr. Gomez came in to check on me, and noticed a tiny bump on my lower lip, and that my eyes were slightly red. He looked down my throat though and said he didn't see anything unusual.
I drank some water and just chilled in the patient room for 20 minutes. Eventually the itchiness subsided, and I realized that the bump on my lip was probably due to irritation as my lips were very chapped. I also slept only 4 hours the night before which was probably why my eyes were red. My eyes weren't swollen or itchy at all.
This was the very first appointment that I have ever gone to by myself. If you have been following my Instagram stories, you are probably aware that my fiance has been out of the country. Of course I could have waited for him to get back so he could come to the appointment with me as usual, but I really want to get through the treatment! So I made the decision to go sooner without him.
I did ask my father to come, but he got called to a meeting across the country for work at the last minute. My mother was luckily able to arrive at the end right before I had a full blown panic attack. I dosed the peanut myself, ran by myself, and then waited about another 10 minutes before she was able to make it. Shout out to the amazing nurse (I didn't catch her name) and to Josh, one of the clinic managers, who saw I was alone at this appointment and came to sit with me until my mother was able to arrive. If it wasn't for these two, I definitely would have had a panic attack while alone.
I was extremely anxious since the beginning, no question about it. Going to an updose appointment by myself is already anxiety provoking enough, but there was something about peanut specifically that made me extremely anxious. My worst reactions ever were caused by carrots, soy milk, and peanuts. I have been nervous about peanut dosing since the beginning of treatment.
I am also having slight issues with my almond and hazelnut maintenance foods - nothing serious, but I get these weird throat sensations. This only added to my anxiety because although I have no issues with any of the other tree nuts, almonds and hazelnuts are specifically the two tree nuts that have some cross reactions with peanut. So I kind of went into the appointment with the mindset that I wouldn't be able to tolerate the dose.
Here's yet another issue that messed with my head. My previous doses at home of 1mg all the way to 36mg contained clear saline solution. By the time I reached 24mg, the taste of peanut became present, but it wasn't very strong. At 80mg though, the solution in the vial wasn't clear anymore - it looked like peanut butter (even though it wasn't, it's peanut protein mixed with saline). The way it looked freaked me out as soon as l saw it. So now I'm anxious because I'm at the appointment alone, because I think I will react since I have issues with almonds/hazelnuts, and the vial looks like peanut butter.
When I drank down the contents of the vial, the taste of peanut was strong - very strong. This only freaked me out more, especially since I know what peanut tastes like as I used to eat it as a child!
Once I was in the car with my mother after the dose, I was having a full on panic attack. My nose felt completely stuffed and the top of my throat felt tight. I had no visible swelling, no hives, and wasn't coughing or wheezing at all. I wasn't dizzy or passing out. I still have no idea what really happened inside my body.
After an hour, I called the clinic because I couldn't calm myself down. They told me I can go ahead and take Benadryl and update them in 20 minutes. I took 5mL of Benadryl (if you'r'e not familiar with the medication, that is a really tiny amount, like for a 6 year old), and immediately felt better 5-10 minutes later.
So was it in my head or were the symptoms real? I have no idea. (Shout to Lisa, a mother of a child in the program, who talked to me on the phone and came to meet me to help calm my anxiety and make sure I was okay!!)
Once I felt better, I asked the clinic what to do about dosing at home. They instructed me to bake the dose instead of taking it straight from the vial. They told me that baking the dose plus the fact that I would be dosing 70mg at first instead of 80mg, and the fact that I would have a rest period and not be running, would all help my body to tolerate the dose.
The 80mg updose appointment was on a Wednesday, and I ended up skipping the dose on Thursday because there was no way I was going to do this dose alone. In fact, I didn't even feel comfortable doing the dose at all. But either way, I ended up baking the 70mg vials into muffins, and when my fiance returned to the states the next day on Friday, I decided that it's either I just dose it or I drop the program. Because if I won't dose, then what?
I took my time eating the muffin on Friday night. I distracted myself to try to avoid a panic attack. I had all of my medications in front of me, my fiance was cuddling with me, and we were watching YouTube and discussing the wedding.
I had absolutely no itching. Nothing happened to my lips. My eyes were perfectly fine. I felt like my nose got a little stuffed, but it was honestly slightly stuffed up throughout the whole day. I wasn't sure if the top of my throat was actually slightly tight or if it was in my head because I was expecting it.
After my one hour rest period though, I felt completely fine, and didn't end up taking any medication. I was so relieved that the dose went smoothly and I have a little more confidence with the process. On Saturday I dosed again the same way, and besides some inner ear itching for a few minutes that resolved by itself, I had no issues! On Sunday and Monday, I got slightly itchy in my mouth for a few minutes, but it resolved on it's own with no intervention.
Here's the most exciting part: the first week of dosing is at 70mg and the second week is at 90mg. If I am able to successfully get through the second week, I am then considered SAFE FROM CROSS CONTAMINATION OF PEANUTS. That means I can buy products that have "may contain" peanuts on the label.
Although the updosing does not stop there - (in fact I get all the way up to 75 actual peanuts, and by 30 peanuts I'm considered free eating) - being cleared for cross contamination is something that I have been looking forward to even more than being able to freely eat peanuts. I CAN BUY ANY CHOCOLATE I WANT BECAUSE I HAVE CLEARED ALL TREE NUTS AND WILL BE CLEARED FOR CROSS CONTAMINATION OF PEANUTS. I CAN GO BACK TO THE ICE CREAM SHOP. This means the world to me.
If you remember from one of my previous blog posts, passing peanut is supposed to clear me for almost all remaining fruits, vegetables, herbs and spices that I am still reacting to.
My goal for 2019: reach food freedom by the end of the year!
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So - were my symptoms at the updose due to anxiety or an actual reaction? What about the tiny symptoms during home dosing? Let me know what you think!