Updose #20

Beck was upped to 8 peanuts, twice a day, today.

Well...I think his body finally hit its threshold.  He's done so well throughout this process, I was hopeful we were one of the lucky ones that would just sail smoothly through to graduation.

After today's dose, we always wait for 45 minutes at the Dr's office for reaction.  He felt fine.  We went and had blood drawn to test IgE levels, to see how his blood work looks for other food allergens.  After his blood was drawn, we hopped in the car to head on a vacation.  15 minutes into the drive we had to pull over so he could vomit and vomit and vomit, on the side of the road.  It was quite intense.  But, he didn't have any other reactions.  I was hopeful it was initiated from the blood draw more than the dose.  He doesn't love needles and has gotten woozy before from a blood draw.  ? We continued on to the airport and flew to CA.

Monday night his dose went fine, 8 peanuts.

Tuesday morning he got an intense stomach ache 2 hours after his morning dose.  Tuesday eve he was fine.

Wednesday morning fine.  Wednesday Eve - stomach ache 2 hours after dose.

Thursday morning he woke up and ran to the bathroom where his body violently ridded itself of everything...for about an hour.  We then boarded a plane back home.  Skipped morning dose.
Thursday eve dose (which was half dose), more vomiting and a lump in his throat he couldn't clear.

Friday (Happy New Years) morning dose was fine.  Evening dose, upset stomach.

Saturday morning - severe stomach cramping.  Saturday eve, the same.

Sunday morning  - fine.  Sunday eve - intense stomach pain, but eventually fell asleep.  Awoke early
Monday morning with more violent vomit and runs...

Since Monday's are our updose day we called the Dr instead of heading into the office in his condition.  (that's the next post)

Updose #19

7 peanuts!  Twice a day!  Pretty crazy if you ask me.

He's enjoying dry roasted peanuts more than the shelled peanuts.
We have to take a few more of those, so he's at 9 dry roasted right now.

A few minor stomach aches this week, but nothing worth reporting.

Updose #18

Upped to 6 peanuts!  Beck opted for JIF peanut butter today.

It wasn't his favorite.  He didn't like the way it was sticking in his mouth.  I mean, licking peanut butter off a spoon probably isn't that enjoyable.  We told him he'd probably like it better once it's paired with chocolate.  :)

No issues.

Updose #17

Upped to 5 peanuts, twice a day!  No issues.

5 is kind of a lot.  I watch some of the younger kids stand there for like 5 whole minutes eating a handful of nuts.  Gosh, getting up to 12 twice a day is going to be pretty filling!

Instead of 5 peanuts he could also be eating:
8 peanut M&M's
or
1 tsp flavored peanut butter
or
1 tsp JIF peanut butter


We didn't bring a jar of peanut butter with us today, so we will have to wait until our next updose appointment to try that.  They like you to try peanut butter in office for the first time as some people have reactions even when they've been doing well with regular peanuts.

Updose #16

No issues last week.  Beck kinda OD'd on peanut M&M's after the first few days.  :)  He said they were just too filling and rich.  He has opted for shelled peanuts most of the time.  Interesting to me!  I didn't OD, I probably gained 5 pounds I ate so many!

Today at his weekly up-dose appointment he was upped to 4 peanuts, twice a day.

This can be taken in the form of:
4 peanuts, 
6 peanut m&m's, OR 
1 tsp flavored peanut butter.

We aren't going to go with the flavored peanut butter option, because it contains sunflower seeds, which is my life threatening allergy!  He decided to wait and try peanut butter when he can have real peanut butter.  (Does Peter Pan Peanut Butter still exist I wonder???)        :)

Crazy

This is still such a strange sight to see in our house...

I haven't had peanut m&m's in 14 years, and boy did I miss them.  After Beck tried them for the first time, we all indulged.  There is something about their distinct flavor, yum.  I have eaten them every day, with every meal (yes, even breakfast) this whole week.  :)

The other odd thing was our date night.  Scott and I sat at the kitchen table and shelled peanuts!  That has never happened in our marriage...

Updose #15

Upped to 3 peanuts, twice a day.  The exciting thing about today is, since Beck doesn't have an almond allergy, he is allowed to have Peanut M&M's as his dose!!!!!!!!  I don't think he was quite as excited as I was...

3 peanuts = 5 peanut m&m's

We went to Target after our morning up-dose and bought shelled peanuts and peanut m&m's for our daily doses this week.

Updose #14

Today Beck was upped to 2 peanuts for his morning and night dosing this week.
Crazy stuff.

Dr. Jones came in the waiting room after Beck had his dose, just to chat with the patients.  He's a good Dr.  We parents commented that we can't believe how fast this is going.  We started the end of July, and here we are, after 15 weeks, at 2 full peanuts, twice a day.

It is a good lesson of baby steps.  That you truly can accomplish great things even if it's small steps (amounts).  If you keep consistent at something, it adds up!  It's not always big events that are the life changers.  :)

Not so great...

Last night was our first "home" dose with an actual peanut.  I think Beck got a little careless.  I'm not exactly sure.  He sat at the dinner table, and we all watched him as he held a peanut in the palm of his hand.  Something that previously would've been like poison.

It was a surreal moment to be in our home, at our dining table, and watching him about to eat a peanut...  It's hard to describe unless you're an allergy mom.

After he popped it in his mouth he only took a few chomps before swallowing.  He swished and swallowed after his dose, but about 15 minutes later he said he had a lump in his throat.

As a mom, you don't want to go into an absolute panic, but... we've been down this road before.  So, I questioned him as to what exactly the "lump" was feeling like.  Was it constricting?  Was it itchy?  Could he swallow?

After a few minutes I decided to be on the safe side we could give some Zantac, as I didn't think this was an allergic reaction, but possibly a little heartburn, which is common.  Well, we tried the Zantac, and it tasted so bad, he threw up.  Which posed a new problem!  Oh great.  Now he just vomited up the dose he just ate!

Dr. Jones was on call last night.  He instructed us to watch for allergic reaction to make sure it wasn't that, and to skip tonight's dose (not re-administer), and try again in the morning.

This mornings dose was just fine.  No issues.  Of course, we made Beck chew the small peanut 15 times before he could swallow.  :)



So, I think it was part psychological.  Perhaps part heartburn, or a small piece in his throat.  I don't know.  Regardless, it's all part of the process!

Updose #13

Today was the day!  ONE WHOLE PEANUT!

Although it looks like it's been munched by a mouse, it was what he got for his first 1 whole peanut dose.  At this stage, they are still doing the peanut by weight.  So, they had to shave some off of this particular peanut to get us to the right weight.

Of course we had to video the occasion...

Updose #12

Crazy stuff!  Today Beck was upped to 500 mg peanut flour.  This is the equivalent to 1 peanut.
It is still packaged in the capsules like I showed in a previous post, only, the capsules are really big now!

100mg peanut flour capsule and 500 mg peanut flour capsule compared to a penny.  :)

During his dose at the Dr's today he gagged, and had a hard time getting the concoction down.  We were out of pudding, so he had to mix it with applesauce.  And, in this amount of peanut flour, I will admit, it didn't look appetizing.  But, he powered through it.

Tonight, he was able to mix it into his chocolate pudding.  I lifted the mixture to my nose and was almost overcome by how potent the peanut smelled.  Under my tongue immediately started to water.  PEANUT!  He's at actual amounts that taste and smell like peanut.  That is miraculous to me.

One other boy that gets up dosed the same time as us had his first real cashew today.  Didn't go so well.  I think it was mostly psychological, but as he chewed one bite, he got this look on his face, and then up it all came...throwing up multiple times.  :(

These kids that have suffered from these allergies so long, have true anxiety.  It's hard to see.

So, next week Beck gets 1 actual peanut.  I am prepared for a situation like our little cashew friend had today.  If it doesn't go well, I have ordered a mortar and pestle so I can grind up the peanut and still put it in pudding if needs be...

Updose #11

Today's dose was upped to 250mg of peanut flour.
This is the equivalent to 1/2 a peanut.
Let me repeat that...
HALF A PEANUT!!!!!!!!!!!!!!!

No reactions today.

Updose #10

There seem to be actual peanut chunks in this batch!
175 mg peanut flour is our dose this week.

This morning on the drive home from the updose he got a really upset stomach, and started like sweating it was so intense.  I watched him for other reactions, which didn't ever seem to materialize.  I was hopeful that he hadn't had enough breakfast before the dose...

Tonights dose he didn't have any problems.

Updose #9

Upped to 100 mg peanut flour!
No major reactions.

To clarify about the peanut flour, I asked the nurse and she said they assume a peanut is 250mg.  But, peanut flour is somehow a little different, so we will reach 500 mg in peanut flour before we move over to 1 actual peanut.  So, he's probably consuming somewhere between 1/5 and 1/4 of a peanut at this point.

Updose #8

PEANUT FLOUR!

Today now that the vacation is over, we were moved up to peanut flour capsules.  All went well with today's dose.  I'm not exactly sure how much we are getting per dose.  The bag says 50 mg on it, but I don't think that's per capsule, because that would equate to 1/4 of a peanut.  So, perhaps it's 50mg peanut flour, which I don't know how much peanut flour equals 1 peanut.  I will try to find out what the equivalent dose is.

Here's what this week's capsules look like:

The capsule splits into 2 pieces.  You're not to swallow these capsules whole, I don't think the plastic pill would dissolve well in ones stomach.  :)  It is interesting how it kind of compacts in one end.

Basically, you carefully pull apart the two ends, and shake out the peanut flour into a semi-solid food such as pudding, apple sauce or yogurt.  You can pinch the ends and use a toothpick to get all the flour out of the pill.  Then, mix it up in your food of choice, and consume it all.

Like always, swish and swallow after any dose to be sure no residue is lingering in the mouth.  They want it all consumed at the same time.

Peanut flour in chocolate pudding, yum!

Updose #7

Today Beck was supposed to be up-dosed to peanut flour in a capsule.

On Saturday, after his morning dose his throat felt a little constricted.  We weren't sure if it was related to the dose, or just random.  We watched him and the symptoms eventually went away with no intervention.

At this morning appointment, we informed the Dr of the episode on Saturday.  Today we decided to proceed with the peanut flour capsule, as we don't have an explanation for Saturday's episode.

I will say, when Beck watched the nurse open the capsule and pour the peanut flour into a pudding mixture, his eyebrows raised.  When he ate the chocolate pudding, he commented that it was crunchy and tasted differently.  Although it was still a small amount of peanut flour (2.5mg), I could actually smell a peanut flavor on his breath...

After doses we always wait 45 mins for reaction.  Today at the end of the 45 minutes when we got up to leave Beck put his hand to his chest.  He said he was fine, but I questioned what was going on.  He said his chest, under his sternum felt like it was being pushed on...

So, to be safe, the dr watched us a little longer and wanted to know what he was experiencing.

It was decided that we would repeat last weeks dose this week and wait to move up to the peanut flour.  The Dr. was very nice.  Her thoughts on his reaction were either:

A.  His body may have hit its threshold, and decided to give us a reaction.  (Which, we've had very few of up until now, just stomach aches).
B.  Perhaps it was anxiety more than an allergic reaction.  She explained that sometimes kids (especially old enough to understand what's going on), when they see that peanut flour, and taste it for the first time, and feel that crunch - it causes them anxiety which can manifest itself in various forms...

Not sure, which it is.  But, in that we have a family trip planned, together we opted it might be best to stay on last weeks maintenance dose so we don't have to worry about reaction while on a trip and don't know where the nearest hospital is.  The only difficulty is going to be keeping the peanut solution liquid refrigerated for the flight, and getting all the liquids onto the flight when they only allow the 3 fl oz!  The idea of taking the peanut capsules (that don't have to be refrigerated) was a really nice, convenient thought.  But, we'll get there soon enough.

Here goes...

Updose #6

Upped the dose at this mornings appointment to 2 mL of the Peanut E solution.   No reactions.

This morning the Dr asked Beck if he's noticed the peanut flavor yet (mixed in the koolaid).  He said no.  She said that it's about at this stage where kids start to actually taste the peanut flavor.  I thought that was interesting!  The drink mix is much thicker now than it was when we started.  A lot more peanut flour is in the liquid, you can see it separated and there's quite a bit of sediment on the bottom of the bottle when it's been sitting for a while.  So, we have to make sure to shake it really well now.

According to our calculations he's up to 1/10th of a peanut per dose.
But when I checked with the staff, they assume a peanut weighs 250mg per peanut, which would make him actually at 1/5th of a peanut per dose!

So, I'm not exactly sure, but point being, we are increasing amounts quickly!

Next week we are to bring a yogurt, or pudding, or applesauce to mix the peanut flour into.  :)

Updose #5

We stayed on dose #4 (1mL of peanut E solution) for 2 weeks due to the holiday.

So, today we bumped up to 1.5mL of peanut E solution.  Grape flavored this week - that's about the only change!  (The nurses just choose whatever flavor to make the liquid...)  I think this means he's at about 1/13th of a peanut.  Although, the "weight" of an average peanut is a debate, I wonder sometimes if my numbers are quite right.  But, regardless, we are making progress.  :)

In 2 weeks time we will be off the liquid and moved to peanut flour!  That's pretty exciting!

Updose #4

Moving right along!  Today he was moved to Peanut E solution, which is more concentrated with the peanut flour.  He is taking 1mL of this for the next 2 weeks.  Yes, 2 weeks instead of 1 because of the Labor Day Holiday next Monday.

So far, no reactions to speak of!  Incredible.

Updose #3

Lucky me, I got the flu!  So, Scott took Beck to his up-dosing appointment this morning.

Dose is the same concentration (Peanut D solution), but he was increased to 8mL.
According to our calculations, this is approximately 1/25th of a peanut!

You can see the little peanut flour particles floating around in the solution when you draw it up.  This seems like progress.  A peanut could be divided into 25 pieces.  This is for sure trace amounts at this stage - so cool and exciting!

The Flu

The flu hit our house this week.  We had lots of cousins visiting, and 10/11 kids were throwing up within a 2 day period...

Beck got it Thursday late afternoon.  Any illness (fever, vomitting, cold, etc) are supposed to be reported to the staff.  Since he wasn't able to keep any food down, I called the Dr.'s office to see what to do about his evening dose.  We normally dose at 7pm.

I am sure each case is different, and I'm sure it depends on which concentration you are on as to what they will tell you to do.  In our case, they had Beck skip his evening dose, and I was told to call back in the morning for instructions for his morning dose.

This morning he was able to tolerate breakfast, so they instructed us to continue on with his normal 6mL dose.  I've heard often times you may move 'back' a little in dosing to then reach your updose again.  In that he's had no reactions, and he only missed one evening dose, and he's only at 6mL of the liquid, I'm guessing it wasn't enough to make him need to backtrack.

Great news!  Glad it was a fast flu bug.

Updose #2

Today Beck was moved up on his dosage.  Same concentration, but now he is getting 6mL.
It's the equivalent to about 1/33 of a peanut.

This week the solution is grape instead of cherry.  :)
That's about the only difference!
No reactions on his initial updose.

Updose #1

This morning was our first "updose" appointment since our initial few days about 10 days ago.

Pretty simple, really.  We check in.  They take vitals, listen to breathing, and ask questions about the last week.  Any asthma?  Any reactions while dosing?  Still taking probiotics daily?  etc.

Since all was well, Beck's dose was then upped to 4mL.
This is about the equivalent of 1/50th of a peanut.
We will do this 4mL dose morning and evening everyday until our next updose appointment in a week.

Slow and steady!  :)

Oops

Large family gatherings with lots of people and activities can make the peanut dosing a bit tricky.  Last night, the peanut solution was left out.  This morning, as the alarm went off to give Beck his dose, I opened the fridge and saw...no bottle.  I immediately turned around and there on the counter sat, a warm bottle of solution.  Dang it all.  Ruined.  It can only be out of the fridge for about 15 minutes before they tell us it is ruined.

So, lucky me, I got to drive an hour and 15 minutes to Layton to pick up another bottle...  So glad the doctors office was accomodating, and that this happened on a weekday instead of a weekend when they are closed!

Day 4

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.

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.

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).


-----------

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.

Day 2 - Prep

Oh my heavens, I am sick to my stomach already and we haven't even left the house!

Today's instructions:

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.

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

We're About to Begin

We've been on a waiting list to begin the Peanut desensitization.  This week I got the call from the allergist, they've got an opening.  We quickly snatched it up!

Beck will have his pre-day #1 on July 20.  This day they will collect all consent forms, and review the program and answer any final questions.

July 21, pre-day #2:  This will include a 4 hour session where he will be given peanut solution every 15 minutes.

July 22, pre-day #3:  Repeat of day 2, receiving updoses every 30 minutes, for about 4 hours to see where he gets for his "tolerance" level of peanut.

(they used to do one 8 hour session, but now do 2, 4 hour days...)

We will then begin August 3 for our up-doses.  Each and every week for 6-7 months we will go every Monday morning to increase the peanut dose.  Mondays are going to be early days around here.  We are a 1 hour 15 minute drive to the Dr.'s office.  And, we need to be there by 7:20 each Monday.  :)

Blood Results are back

At our initial appointment they drew blood to check Beck's IgE levels.

These numbers seem to fluctuate through the years, so I am curious to learn more about why that happens.  (I've never gotten clarification to my main question - if he has been exposed recently to an allergen, does his IgE level indicate that?)

What was clarified to me this trip is:
IgE levels don't indicate severity of reaction.
IgE levels tell us how likely it is you'll have a reaction.

The other interesting tid bit I learned is that skin tests have a 50/50 chance of producing a false positive or false negative (not very accurate).

A RAST test (done by drawing blood) measures the level of allergen-specific IgE in your blood. In other words, it measures the concentration of antibodies your body has created against a particular food allergen.  What's interesting to note is, not everyone with the same IgE (or RAST score) will react in the same way to a food allergen.  That's why those with a medium risk score have often been advised to minimize exposure to a specific allergen!


Here is what's known as a RAST scale, and how Beck has tested over the years to his severe allergies, which are peanut and walnut:

A Candidate

Yesterday we met with an allergist in Layton (near SLC).  He is desensitizing people that have food allergies.  I have met with a few other allergist also doing this, so I had my list of questions, and my skeptical attitude before our appointment.

Previously,
*  Stanford required a 4+ year commitment.
*  My allergist in Reno said no, don't participate, it's too dangerous (he wasn't doing the program himself, just heard about it.)
*  Allergist in Sacramento was awesome, but soon after getting in touch with her, we discovered we would be moving to Utah, and I put everything on hold.

My main question - "Is Beck too allergic or is he a candidate?"  
Dr's response - nobody's too allergic.  
We just have to take it in slower steps if reaction occurs. BECK IS A CANDIDATE!  

Many may not understand what this means for us, especially if you haven't lived with life threatening food allergies.  This is life changing for us.  I awoke at 3am last night and could not go back to sleep, due to excitement and pure amazement.  I cried to Scott explaining what this means to me.  Where in the world will I direct my built up anxiety level if i don't have to worry about peanut exposure?!  :) ha ha!


Perhaps you are curious how it works:

It is anticipated he will begin the desensitization program in 3-4 months time.  The Dr. does "groups" of kids at the same time, the current group graduates in May and the next group will begin.

We had blood drawn yesterday at our consultation, once the Dr. gets those back, we will have 2 more appointments.  Before beginning they like to get a good idea where all his levels are.  They monitor basically the IgE, breathing, as well as his eczema...

-  IgE levels - these are antibodies that attack antigens like bacteria or allergens.  Beck's current IgE levels are over 100.  This is bad.  Greater than 18 is considered "strongly positive" (anaphylactic).  But, as the dr explained yesterday, the IgE level doesn't necessarily mean how BAD his reaction would be.  It measures the likelihood of reaction.  Not severity.

- Breathing levels - they take pretty simple breathing tests into the computer to get an idea how much air he can move through his lungs.  When kids also have asthma, it can be harder to keep the body under control during OIT treatment. (OIT stands for oral immunotherapy)

-  Skin Prick - here's what I found fascinating.  He didn't even bother to do a skin prick.  He said it's a 50/50 chance that the skin prick will produce a false positive or a false negative.  He said, "We know he's allergic, I don't need to see his skin react.


After our next 2 visits we begin "Day 1" (as it's called.)

Day 1 visit is 8+ hours long.  On this day they will administered peanut protein in liquid form, into the back of becks mouth.  They do this every 15 minutes for 6 hours and watch for reactions.  The amount of peanut protein being given in these doses is very minimal.  But for kids like beck who have severe allergies, it is enough that it would've been something we would've avoided because it could cause death...  And in all the cases where it's been given not one single person has died.  Not only that, he's never had to send anyone to the ER.  They have occasionally had to give epinepherine in office, but majority of people just get stomach aches, which is fascinating.

After this initial "Day 1" we continue to go to the Dr's office every week, on the same day of the week (like always Tuesdays, or whatever day it is).  On this Dr's office visit day, they "up" the amount of peanut protein given.  We are there for about 1.5 hours to watch for reaction.  We are then sent home with this same amount of PP (peanut protein).

At home for the next 6 days we administer this PP morning and night - as close to 12 hours apart as possible.  He needs to be monitored for 1 hour after ingestion for reaction (no sleep, no school).  He also cannot exercise or do anything to elevate heart rate or body temperature for 1 hour before, and 2 hours after ingestion each day.

This continues for approximately 6 months.
During the 6 month process the PP changes from liquid form, to peanut flour, to actual peanuts.

After about 6 months he will be "desensitized" and his body will no longer send an overactive immune response when eating peanuts.  He will be required to ingest the "maintenance dose" every single day.  But you know, the maintenance dose isn't bad!  It's 8 peanuts.  That's pretty cheap daily medication.  And, it can be in the form of peanut butter, or peanut M&M's or a myriad of other things.  And, he can consume MORE than that amount, but must always eat atleast that minimum.

Absolutely miraculous to me.

During our appointment yesterday I had to seriously control myself from not jumping out of my chair to hug the Dr.  I could hardly contain my excitement.

At the end of the appointment the Dr turned to Beck and asked if he was excited.
Beck:  "Oh ya."
Dr:  "Do you have any questions?"

Beck:  "Once I reach my maintenance dose, can I eat peanut candies instead of actual peanuts?"
Dr:  "Yep, peanut M&M's are my personal favorite."

Beck:  "What if I don't even LIKE peanuts?!"

Which is actual a valid point.  Lots of kids have suffered so long they have a psychological aversion to peanuts.  Just seeing one gives them anxiety.  Beck is old enough this may work to his benefit or detriment.  He's lived in fear so long it will be hard for him to even touch a peanut (no joking).  But he's old enough, perhaps we can help him understand the processes going on in his mind.