First full day of home dosing! Nothing eventful to report. Just giving the 2mL dose, morning and night.
After the night time dose he had an upset stomach, so just lounged around for a little big munching and sipping on drink. It was gone within 45 minutes.
I'm still amazed that's all the body has done to react thus far.
Thursday, July 30, 2015
Wednesday, July 29, 2015
Day 3
Today was basically a repeat of yesterday, just a little higher doses!
Today we went from about 1/5,000 of a peanut up to 1/100th of a peanut! He had a total of 11 doses today, every 15 minutes, just like yesterday. Beck had no reactions today, yipee!
(tough life sitting in a waiting room for 5 hours and playing video games)
We were sent home with our home doses for the next 10 days. We don't anticipate going back to the Dr. until August 10.
Each day we will be giving him the 1/100th of a peanut - once in the morning, once in the evening, about 12 hours apart. This is now when the 'no activity that elevates body temperature or heart rate' comes in as difficult. :) No major activity 1/2 hour before dose, and 2-4 hours after dose... On August 10 we will return for our new updose dosage.
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As an interesting side note for today: The home-dosing solution (which is the peanut flour in a liquid solution) must be refrigerated. We had strict instructions yesterday that if it goes unrefrigerated for more than 15 minutes it is ruinied. Well, we live over an hour from the Dr's office. Today as we left, they handed us our home dose bottle in a little insulated bag. I didn't even open it, I simply took it and we left. When we got home, as I unloaded it into the fridge I realized the bottle was room temperature - definitely not 'cool' or refrigerated. There hadn't been any ice in my cooler. :( I called the office to see what to do. I think it was a combination of a new situation and the staff not remembering I don't live right down the road, and me not double checking for ice, etc. Anyway, long story short, we had to get more medicine - the stuff we had was ruined. One of the nurses met up with Scott after work and gave him the new solution, which was very kind as Scott was in Salt Lake, so it saved me 2.5-3 hours driving back to Layton!
Incase you're curious, as I know I would be, this is what the home dose bottle looks like. Must be kept in the fridge. You must shake it well, as the solution separates over time and settles in the bottom. Then, simply insert the syringe and draw up the mL amount you're instructed.
Today we went from about 1/5,000 of a peanut up to 1/100th of a peanut! He had a total of 11 doses today, every 15 minutes, just like yesterday. Beck had no reactions today, yipee!
We were sent home with our home doses for the next 10 days. We don't anticipate going back to the Dr. until August 10.
Each day we will be giving him the 1/100th of a peanut - once in the morning, once in the evening, about 12 hours apart. This is now when the 'no activity that elevates body temperature or heart rate' comes in as difficult. :) No major activity 1/2 hour before dose, and 2-4 hours after dose... On August 10 we will return for our new updose dosage.
----------
As an interesting side note for today: The home-dosing solution (which is the peanut flour in a liquid solution) must be refrigerated. We had strict instructions yesterday that if it goes unrefrigerated for more than 15 minutes it is ruinied. Well, we live over an hour from the Dr's office. Today as we left, they handed us our home dose bottle in a little insulated bag. I didn't even open it, I simply took it and we left. When we got home, as I unloaded it into the fridge I realized the bottle was room temperature - definitely not 'cool' or refrigerated. There hadn't been any ice in my cooler. :( I called the office to see what to do. I think it was a combination of a new situation and the staff not remembering I don't live right down the road, and me not double checking for ice, etc. Anyway, long story short, we had to get more medicine - the stuff we had was ruined. One of the nurses met up with Scott after work and gave him the new solution, which was very kind as Scott was in Salt Lake, so it saved me 2.5-3 hours driving back to Layton!
Incase you're curious, as I know I would be, this is what the home dose bottle looks like. Must be kept in the fridge. You must shake it well, as the solution separates over time and settles in the bottom. Then, simply insert the syringe and draw up the mL amount you're instructed.
Tuesday, July 28, 2015
Conversion Chart
Today I was so consumed with the actual procedure (and anxiety), it wasn't until we got home (and I'd had a nap) that I was able to think, and wonder, and be curious!
How much of a peanut did he even eat today?
Good thing Scott is good with numbers and has worked in nanograms and micrograms much of his career!
Here is the breakdown, in layman's terms:
(Assuming 1 peanut weighs .5 grams (or 500,000 micrograms), which is what the average peanut weighs.)
9:15 am - Given 1/100,000 of a peanut
9:30 - (previous dose repeated)
9:45 - given 1/50,000 of a peanut
10:00 - (previous dose repeated)
10:15 - given 1/20,000 of a peanut
10:30 - (previous dose repeated)
10:45 - given 1/10,000
11:00 - (previous dose repeated)
11:15 - given 1/5,000 of a peanut
11:30 (dose repeated)
So, overall, he went from eating 1/100,000 to eating 1/5,000.
I guess that's progress. :) As minimal as it is!
To make this more complex, how much of a peanut in total did he eat ALL TOGETHER?! Good thing Beck had awesome Mrs. Carlson for math this last year - he whipped this out in no time. He ended up eating 76/100,000 of a peanut (which reduces down to about 1/1300 of a peanut).
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Home dose tonight (at 7:30pm) is 1/10,000 of a peanut.
How much of a peanut did he even eat today?
Good thing Scott is good with numbers and has worked in nanograms and micrograms much of his career!
Here is the breakdown, in layman's terms:
(Assuming 1 peanut weighs .5 grams (or 500,000 micrograms), which is what the average peanut weighs.)
9:15 am - Given 1/100,000 of a peanut
9:30 - (previous dose repeated)
9:45 - given 1/50,000 of a peanut
10:00 - (previous dose repeated)
10:15 - given 1/20,000 of a peanut
10:30 - (previous dose repeated)
10:45 - given 1/10,000
11:00 - (previous dose repeated)
11:15 - given 1/5,000 of a peanut
11:30 (dose repeated)
So, overall, he went from eating 1/100,000 to eating 1/5,000.
I guess that's progress. :) As minimal as it is!
To make this more complex, how much of a peanut in total did he eat ALL TOGETHER?! Good thing Beck had awesome Mrs. Carlson for math this last year - he whipped this out in no time. He ended up eating 76/100,000 of a peanut (which reduces down to about 1/1300 of a peanut).
-----------
Home dose tonight (at 7:30pm) is 1/10,000 of a peanut.
Day 2 - treatment
To begin, I was pretty dang anxious. Those of us mothers to food allergy kids have been so vigilant, we have to be! We do everything in our power to keep allergens away from our kids. And here I was, giving permission for him to ingest the one thing I've worked so hard to keep him free of for the last 14 years!!
The staff was very nice and said they would be concerned about what type of mother I was if I weren't nervous. :)
In the waiting room:
My body couldn't decide whether to faint, puke, or poop my pants - I was so anxious. Beck was all smiles, ready to begin.
After they took all his vitals, we were taken to the OIT room. (OIT stands for Oral Immunotherapy). We were here with 6 other kids getting treatment for food allergies. It's just like a waiting room in a doctors office, a room with lots of chairs. Nothing fancy... Beck really liked this sign on the wall:
Beck began treatment at 5 micrograms of peanut flour mixed in a kool-aid liquid. This is put in a syringe, and then inserted into the mouth, and taken just like a liquid medicine. After it is swallowed, the kids are told to swish and swallow. This way, any residue that might be left in the mouth is also swallowed.
15 minutes later, a timer would ring, and he was given 5 micrograms again.
15 minutes later, timer, and he was given a little more concentrated dose.
The nurses busy at work prepping doses and keeping charts up to date:
Each dose was given and then repeated once and then he got a higher concentration.
This went on for about 2.5 hours (I think 10 doses were given today).
We then waited around for a half hour to watch for reaction, and get home instructions for tonight from the doctors and nurses.
Tonight we give our first "home dose", at 7:30 pm.
We return tomorrow morning for a repeat of what occurred today in office.
The only reaction was after about dose 3 he got a little stomach cramping, said he just felt "blah". He was given some crackers to eat, and the feeling subsided... ?!
Of course, being a mom I was watching every time he itched his nose, questioning if he was getting hives. :) It was nice to see the other moms doing the same thing. Good to know I'm not the only crazy one! Haha.
The staff was very nice and said they would be concerned about what type of mother I was if I weren't nervous. :)
In the waiting room:
My body couldn't decide whether to faint, puke, or poop my pants - I was so anxious. Beck was all smiles, ready to begin.
After they took all his vitals, we were taken to the OIT room. (OIT stands for Oral Immunotherapy). We were here with 6 other kids getting treatment for food allergies. It's just like a waiting room in a doctors office, a room with lots of chairs. Nothing fancy... Beck really liked this sign on the wall:
Beck began treatment at 5 micrograms of peanut flour mixed in a kool-aid liquid. This is put in a syringe, and then inserted into the mouth, and taken just like a liquid medicine. After it is swallowed, the kids are told to swish and swallow. This way, any residue that might be left in the mouth is also swallowed.
15 minutes later, a timer would ring, and he was given 5 micrograms again.
15 minutes later, timer, and he was given a little more concentrated dose.
The nurses busy at work prepping doses and keeping charts up to date:
Each dose was given and then repeated once and then he got a higher concentration.
This went on for about 2.5 hours (I think 10 doses were given today).
We then waited around for a half hour to watch for reaction, and get home instructions for tonight from the doctors and nurses.
Tonight we give our first "home dose", at 7:30 pm.
We return tomorrow morning for a repeat of what occurred today in office.
----------
The only reaction was after about dose 3 he got a little stomach cramping, said he just felt "blah". He was given some crackers to eat, and the feeling subsided... ?!
Of course, being a mom I was watching every time he itched his nose, questioning if he was getting hives. :) It was nice to see the other moms doing the same thing. Good to know I'm not the only crazy one! Haha.
Day 2 - Prep
Oh my heavens, I am sick to my stomach already and we haven't even left the house!
Today's instructions:
Today's instructions:
Monday, July 27, 2015
Day 1
Our appointment this morning was uneventful. We arrived and had his vitals taken, he did a breathing test, and they documented if he's had any asthma recently needing medication.
The nurse practitioner then answered questions and explained the basics of the treatment tomorrow and Wednesday.
We will arrive early, and there will be a group of kids starting the peanut program with us tomorrow. It is one big room where everyone sits together. :) The liquid peanut protein will be administered orally, every 15 minutes. It will simply be a liquid in a syringe that they squirt in the back of his throat. We should be there approximately 4-5 hours tomorrow for treatment.
The most common side effects are "oral itch" (an itchy mouth) or an upset stomach.
He needs to eat a good breakfast tomorrow, and he will basically be playing the ipad or reading a book while we are there tomorrow. He can eat snacks during the day.
They also gave us prescriptions for medicines incase he has severe reactions while doing our home dosing.
Allegra (liquid form)
Prednisolone (liquid form)
Zantac (liquid form)
Albuterol
EpiPens
Probiotics
The home dosing is what will be the most labor intensive part of this process. He will need daily doses twice a day. They should be about 12 hours apart (as much as possible). He can't have the dose later than 9pm.
No vigorous activity 30 minutes prior to dosing OR 2-4 hours after dosing. This includes any activity that will elevate heart rate or increase body temperature.
Must eat 15-60 minutes prior to dosing. Never take dose on an empty stomach.
Avoid junk food.
Must stay awake to be monitored after dosing for one hour after dose is administered.
Swish and swallow with preferred drink after each dose to avoid oral itch.
If child becomes ill (fever, rash, congestion, cough, wheezing, sore throat, etc) contact the office before the next dose. Since their body is already fighting the allergen, they often don't updose you as soon when you're fighting another infection or virus.
The nurse practitioner then answered questions and explained the basics of the treatment tomorrow and Wednesday.
We will arrive early, and there will be a group of kids starting the peanut program with us tomorrow. It is one big room where everyone sits together. :) The liquid peanut protein will be administered orally, every 15 minutes. It will simply be a liquid in a syringe that they squirt in the back of his throat. We should be there approximately 4-5 hours tomorrow for treatment.
The most common side effects are "oral itch" (an itchy mouth) or an upset stomach.
He needs to eat a good breakfast tomorrow, and he will basically be playing the ipad or reading a book while we are there tomorrow. He can eat snacks during the day.
They also gave us prescriptions for medicines incase he has severe reactions while doing our home dosing.
Allegra (liquid form)
Prednisolone (liquid form)
Zantac (liquid form)
Albuterol
EpiPens
Probiotics
The home dosing is what will be the most labor intensive part of this process. He will need daily doses twice a day. They should be about 12 hours apart (as much as possible). He can't have the dose later than 9pm.
No vigorous activity 30 minutes prior to dosing OR 2-4 hours after dosing. This includes any activity that will elevate heart rate or increase body temperature.
Must eat 15-60 minutes prior to dosing. Never take dose on an empty stomach.
Avoid junk food.
Must stay awake to be monitored after dosing for one hour after dose is administered.
Swish and swallow with preferred drink after each dose to avoid oral itch.
If child becomes ill (fever, rash, congestion, cough, wheezing, sore throat, etc) contact the office before the next dose. Since their body is already fighting the allergen, they often don't updose you as soon when you're fighting another infection or virus.
Wednesday, July 15, 2015
Postponed
We got postponed one week. New schedule is as follows -
Monday the 27: pre day (ask questions, fill out papers)
Tuesday the 28: Day 1
Wednesday the 29: Day 2
Monday the 27: pre day (ask questions, fill out papers)
Tuesday the 28: Day 1
Wednesday the 29: Day 2
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