Friday, April 10, 2015

Q&A Part 3: Home Dosing

And now for some answers on what it is we do at home – everyday, twice a day for 6 months! And remember, this is purely from our experience. These details are specific to our situation, but would probably be very similar to any other patient looking in to doing oral immunotherapy (OIT) through Dr. Jones at Rocky Mountain Allergy, Asthma, and Immunology (RMAAI).

1.  Q: How does dosing at home work? 
A: When you’re home you give the appropriate dose (it’s like a prescription) of the allergen twice a day about 12 hours apart (there’s a 9-15 hour window). We usually dose in the morning between 7 and 9am (early on the days she has preschool), and then dose again somewhere between 6 and 8pm, depending on how early our daughter needs to go to bed. This has been one of the hardest things for us because she’s young enough that sometimes she naps and sometimes she doesn’t. It’s hard when our appointment is at 10:00 am, with her escalation dose around 10:30am – so we can’t give her medicine until 7:30pm at the earliest, but bedtime is 7:00pm if she hasn’t napped! If I had to do this again I would either wait until she wasn’t napping at all and going to sleep around 8 or live closer so that I could get to the office earlier.

2.  Q: What are the "rules" for dosing?
A: There are actually quite a few which were hard to remember at first, but have gotten much easier since we do it twice a day.
  • Probiotics (the dose depends on the kid) – this is to help prevent stomach upset which is the most common side effect. Our kiddo has not complained of stomach problems, but she’s been on a probiotic since we started OIT. It’s another “medicine” that has become a part of our day at morning and at night. We started with the more expensive brand, but changed to the cheaper brand and it doesn’t seem to have affected her.
  • Rest – She’s supposed to rest a half hour before and 2-4 hours after each dose. Um… yeah right! She just turned 4! But she’s pretty good to sit and play with the iPod, or watch a movie, or do “light” activity with me. I try to get her resting time in before preschool at 9:15, but we frequently cut it close (but she hasn’t had a problem yet). Increased activity increases the heart rate and temperature, which can activate the immune system to respond to the allergen more readily, which is why they strongly suggest resting.
  • Eat 15 minutes to 1 hour before. This is harder than it sounds. My kids don’t eat straight away in the morning – we all have what we call “sleep inertia.”  So getting her to eat before 7am so that she can be dosed, rested, and ready for preschool at 9:15 is harder than it sounds, hence why we “cut it close.”
  • No sleeping for an hour afterwards. Again this is easier said than done when your kid goes to bed at 7:00pm. We have to take snacks and her dose anytime we are going to be out for the evening. It’s not difficult, but it is a nuisance.
  • No dosing after 9pm. This is because cortisol levels change as we get ready to sleep. This one has never been a problem for us since she’s always dosed pretty early, but I wonder if cortisol levels are different for kids her age……
  • Missed dose or not within the 9-15 hour window or outside any of the above rules – you call the office during office hours, or call/text Dr. Jones when they are closed. There are specific instructions for if this happens so that you don’t run the risk of overdosing beyond what can be tolerated. We have been fortunate so far to only have to text a few times, but when we do, the response time is pretty prompt.
3. Q: What are the doses like?
A: Changes as you go – and this is specific to peanut.

  • Liquid – they dissolve a tiny amount of peanut flour into Kool-Aid and you administer it with an oral syringe. Each escalation dose increases either in amount or concentration.
  • Flour (50, 100, 250, 500mg) – we mixed it into yogurt, applesauce, or pudding. She preferred yogurt and applesauce! I was sure she’d love it in the pudding… but nope.
  • Whole, roasted peanuts (1 at a time until 8, 10, 12, 24). We started out by giving her chocolate chips with her peanuts, but after a few weeks we could use M&Ms or peanut butter. If the patient has multiple allergies you have to be careful about what you use (peanuts in the shell, no M&Ms because of cross contamination, flavored peanut butter, etc.). 
  • The Office will provide all the liquid doses, the flour, and the first 2 weeks of whole peanuts where they have to be measured carefully. After 3 peanuts, the size variation is negligible, so they have you bring your own peanuts, M&Ms, or peanut butter. 
4. Q: What if there’s a reaction?
A: This is our worst fear, right?! We’ve been blessed so far to have had only very minor reactions if any. She’s had a couple random hives on her face, but they’ve always popped up hours after her dose, so I can’t even be positive that it was the peanuts and not some other thing. Most reactions occur within one hour of dosing (if I remember correctly), which is why we are supposed to watch her closely for that first hour (that’s also another reason why they shouldn’t go to sleep within an hour of dosing). We have a “Home Emergency Plan” typed up and taped to the inside of our cabinet by the phone and fridge so that we can find it quickly if a reaction should take place.
  • Mild Reaction – (ie. A hive). Report it to the office before the next dose. Watch it carefully to make sure it isn't progressing into something worse. Hopefully the body will resolve it quickly.
  • Moderate Reaction – (ie. Hive progresses into a full body rash). If the mild reaction progresses or worsens, then call the office immediately. Before we started, the only medications we had were Benadryl and the epi-pen. When we started this treatment, they gave us prescriptions for 3 other medications (Zantac, Prednisolone, and Allegra). If she has a moderate reaction and the Dr. says to, we would give all three of those medications at a certain dosage, as prescribed. We had to do the Zantac alone once because she threw up… but it was precautionary, as we were pretty sure it wasn't due to the peanuts. Some parents have these three meds with them all the time just as they do the epi-pen. We chose to leave them at home since that is where we are almost always when she is being dosed and for the resting periods when a reaction is most likely to occur.
  • Severe Reaction – (ie. Anaphylaxsis -this is when multiple body systems are involved. Hive + Throwing up. Or Hive + Throwing up + Swelling.) This is the scary stuff that we are so grateful to have yet to experience it (and hope never to). All care givers of kids with food allergies should know what to do in this instance: 
  1. Give the epinephrine!
  2. Get to the Emergency Room (not insta-care)!
  3. Call Dr. Jones.
  4. Give the 2nd epi-pen included in the pack if needed on your way.
  • If in doubt, give the epi! And yes, during this treatment, always have an epi-pen with the child!
It’s very strange that peanuts have become a part of our routine again. Currently our daughter is taking a teaspoon (5g) of peanut butter on bread with jam every morning and getting a treat of 10 peanut M&Ms every night. She’s loving that part! We bought two Costco bags of peanut M&Ms, two large jars of peanut butter, and some roasted peanuts the other day… so weird! We really thought that peanuts would simply not be a part of our lives anymore, and that would have been fine. But now that it’s allowed, I must admit that we as parents have been making up for all we've missed with dozens of PBJ sandwiches. Yesterday at the park, a group of kids were eating trail mix. Peanuts were falling everywhere into the mulch, and I’m sure I’m the only one who noticed it at all. At first I thought, “Oh no! We’ll have to leave.” But then I realized that we’ll be ok. We’re being liberated – almost there… 6 more weeks!

One more Q&A to come; when we are done we’ll let you know what the maintenance is like, what graduation day is all about, etc. Any other questions you want us to address?

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