There are over 50 OIT family blogs published in our “Research & Learn“ library. They contain the journey of that family in OIT–some are in clinical trials, and others are in private practice with board-certified allergists. All the blogs are fascinating to read, full of wisdom and knowledge unique to that family’s journey.
ONE EXCERPT FROM THE BLOG:
OIT is a rollercoaster
April 20, 2016
I am late updating about the past two weeks. We had a significant event, but it was “user error”.
We went up to the highest peanut powder dose about two weeks ago. That was going really well, my husband was dosing him because he was home on spring break week. The Saturday after he updosed to that amount, I gave him the dose. I used less chocolate ice cream to “sandwich” the powder in. Basically there was loose powder in the middle of the dose. When G bit down on it the powder “poofed” in his mouth, which he then tried to swallow. It coated his throat, which caused immediate itching. We had him drink, drink, drink, but it wasn’t enough. His throat did get “tight”. We gave Benadryl right away and called our Doctor. He suggested that if things weren’t better in 10 minutes to give additional Benadryl and/or epi.
He wasn’t any better, so I have him additional Benadryl (which is the max dose he should have based on weight). Within 10 minutes it stabilized and was feeling better. He did get a “hoarse” voice and said it felt “squeezy”, but his breathing was not labored at all, no hives, no systemic symptoms. I believe it was a purely contact reaction. The Benadryl made him sleepy, and he fell asleep about 45 minutes after the dose. He confirmed that his throat was much better but not perfect.
I sat near him and cried. This process takes a lot of courage. It was scary. The positives I see now are that it occurred during the “observation time”. My doctor answered the phone on the second ring. I had called him twice. He gave me immediate clear instructions on what I should do. He called back about 30 minutes later to check on him.
He woke up after about 2 hours and was perfect. We skipped his dose that night, and dosed the next morning. I was terrified, but we made sure to mix the powder in well. G wasn’t nervous at all. He took that dose and the next three without any trouble at all.
That following Tuesday (3 days after the reaction), we updosed to 1/2 peanut. A real, live peanut. I was scared–how could a child that just had a contact reaction chew a peanut and have no effect? We asked to be in a private room instead of the community updose room. Our Doctor answered every question patiently. Apparently there are more problems with the powder than with actual peanut. The nurse brought in the peanut and away he went.
G was visibly scared. They had him hold it first, for pictures of course. Lol. Then he asked if he should eat it. He took a deep breath and placed it in his mouth. He chewed it up, rinsed and swallowed. Guess what? Nothing happened. He was perfectly fine.
The next morning he was again scared to take his dose. He had to hold it, close his eyes, take deep breaths and talk to himself. We stood next to him, assured him that the last 6 months of peanut solution and then powder were getting his body ready to eat peanuts. We told him he was strong and his body was ready. He took his dose and again was fine.
Every day we see him becoming a little less frightened. Honestly, after his entire life of avoiding peanuts, it’s going to take some time to emotionally desensitize. Last night there was just the slightest hesitation before popping it in his mouth.
He will go up to 1 peanut twice a day this afternoon. He is slightly worried. Honestly, so am I. We haven’t doubled the peanut protein amount in weeks…it’s been a gradual increase. I suspect things will go smoothly.
Thanks for reading! I also want to remind people that kids with Ige of >100 have had less side effects than we’ve had. There are only two contraindications to OIT…uncontrolled asthma and EoE (Google that to learn more). G was having contact reactions when we started, and he has not had ONE contact reaction since we started. Regular allergist can’t answer questions about OIT because they aren’t practicing that . You wouldn’t ask your internist about heart surgery for example. There is a lot of misinformation about OIT. It’s food, it’s not ever going to be FDA approved. The peanut pill that is coming out soon starts at 0.5mg. G needed to start at 0.02mg. He wouldn’t have made it the first day. Scary stuff. It’s frightening to think that regular allergist will have access to prescribing that. You need an OIT committed allergist who answers their cell phone on the first or second ring. I’ll get off my soapbox now.
Have a great week!!
