The Last Couple Weeks

I haven't updated in the past couple weeks, mostly because we've been busy and OIT has been relatively uneventful (which is a great thing).  

At Sean's dose increase two weeks ago, he went up to 25mg of peanut flour, which is equal to 10.25mg of peanut protein.  He handled it amazingly well, and really had no adverse reactions to that dose.  However, he has been sick pretty much nonstop for the last month or so, most likely due to being in preschool and out of the house around other kids regularly for the first time ever.  For a few weeks, we were treating it as a virus because there was no sign that it was anything else.  But that weekend, he woke up in the middle of the night crying, vomiting, and with a pretty high fever.  Before I realized that he had the fever, I was afraid the vomiting was related to his dose, even though it had been several hours before.  

After we realized he had the fever, I went into panic mode a bit because I wanted to get him cooled down.  Shortly after his second birthday, he had a febrile seizure which left me traumatized for many months.  I'm still a freak about fevers to this day.  It is such a horrible, helpless, terrifying experience to watch your child have a seizure.  His eyes rolled back, his lips turned blue, and he was just jerking.  Thankfully, febrile seizures do not cause any sort of lasting harm, but after watching it happen, you could not convince me otherwise.  I was distraught at the notion that no child could ever be normal again after experiencing something like that.  Thankfully, he was back to my sweet, playful boy before the doctors ever saw him in the ER.  I had severe anxiety for months and months to come, and I still resort to whatever methods I can to get the kids cooled down quickly when they have a fever.  So I gave him some meds and put him in a lukewarm bath to cool him off, then brought him downstairs.  

He had been complaining that his eye hurt, and I thought maybe the high fever was just causing him to have a headache.  But then I saw that he was actually touching the spot just below his eye and it was really puffy.  He had a sinus infection!  It was Sunday, and we decided to have my husband's parents come over to help because I had to work, and they would take the kids all to a walk-in clinic at Walgreens.  They were only able to see children over 18 months, so they couldn't see Nolan, but the older two kids were treated for ear infections (and Sean's sinus infection).  They took amoxicillin for a week, and Dr. M. had us omit his dose for that full day, then Monday we gave him half doses, and then starting on Tuesday, we gave him his full dose.  Thank goodness, there was no reaction to any of those doses!

Today, he had another dose increase.  It was double his previous dose, which always makes me a nervous wreck.  Sometimes, his dose only increases by about 50% and he seems to tolerate those dose increases better.  Doubling the dose is a huge change for his little system to tolerate.  I wonder if they've ever considered increasing in smaller increments.  It would drag out the length of treatment, which some people may not like, but I'd rather take my time and go slowly.  I was a little discouraged today that he didn't tolerate his dose the best.  He started producing a lot more mucus in his nose and throat, his eyes got watery and he was rubbing them (I assume they itched a bit) and so they got a little puffy also.  Seeing those reactions makes me a nervous wreck, but Dr. M. is calm and reassuring.  He says these reactions are pretty common, and that I may continue to see them for the first few days of each dose.  I was glad he said that, as it did give me reassurance, but I'm certain I'll still be a basket case in the morning if he has similar reactions before school.  We do our dose increases every other Thursday, and I'm a nervous wreck on the following Friday when he goes to preschool and I go to work.  

We are now on the final liquid peanut dose, which is 50mg of peanut flour, equivalent to 20.5mg of peanut protein.  The next time we increase his dose, we will begin peanut flour which comes in capsule form and is opened and sprinkled into applesauce, pudding, etc.  It will be nice not to have to worry about the liquid anymore.  We have ended up with two new insulated lunch bags because we keep forgetting to take ours to the appointments to transport the peanut liquid home (it stays refrigerated).  Also, I was putting away the groceries one day and knocked the glass bottle off the shelf in the fridge.  By some miracle, I managed to catch it.  Had it broken, we would have been making the 8-hour round trip to Dr. M's office to get some more.  So it will be nice to move on to capsules to eliminate some of that worry.  Dr. M. said today that there are five doses of the peanut flour, and then we move on to real peanuts!  We go for dose increases every two weeks, so after two weeks of his current dose and 10 weeks of the flour doses, he will eat one full peanut twice daily.  If we don't have any setbacks, he could eat a real whole peanut in three months!  The thought of it is simply mind-blowing!  I hope everyday for no reactions, no setbacks, and smooth sailing.  

Tonight, I am nervous that he will react to his newly doubled dose, and I am just anxiously hoping for the best.  I joke that this is my biweekly three-day panic attack, but unfortunately, it really is no joke.  I hope that this gets easier as we get further into the treatment, but I'm not convinced that it will.