3rd Updose

On March 28th, Kyzer had his 3rd updose.  He's at 20 mg of peanut flour!!  Can you believe it!?!?!  We can't either!!

It's crazy to me how time just keeps creeping along, and we are all of a sudden almost 2 months into the process!

We have settled into our little routine for updose days.  I wake Kyzer up at 6:00 am.  He gets dressed, goes to the bathroom, brushes his teeth.  We do not speak during this time!  He gets in the car with his blanket and pillow.  We do not speak!  He eventually falls back asleep and wakes up when we are about 15 minutes away from the office.  We get to the office, and he eats donuts in the car right before we go in the office.  He has his check with the nurse and doctor, swallows the updose, we stay for 45 minutes, then they send us on our way.  We then stop at Popeyes around 11:15 on our way home for lunch.  

This is his favorite part of the day. 

2nd Updose

I don't know if I will blog about every updose appointment, but right now, while this is all still so new to us, I'm blogging away!  This journey is so mind-blowing to us that I want to document as much as I can.

Tuesday, March 14th was Kyzer's 2nd updose appointment.  Tom was out of town for work so little brother, Hendrick, came to the appointment with us.  We were expecting snow and nasty road conditions that morning, but thankfully, we got very little snow and the roads were all fine.  We left our house at 6:00 am and got to the appointment around 8:30 am....a whole 30 minutes early.  We all ate donuts in the car before we went inside. (I've been buying donuts from Aldi's...which is new for us!  We normally avoid donuts, but these have proven to be safe for Kyzer).

Waiting to get his vitals checked

(and little brother).

 Up first, Kyzer's vitals were taken, then the doctor came in to listen to him breath.  He asked how everything was going, and I told him that Kyzer has experienced some symptoms that I'm not sure if they are OIT related or not.

Getting his heart rate checked.

 On Saturday, while we were in Lowe's, Kyzer all of a sudden became very lethargic.  He could barely keep his eyes open and said he was 'just so sleepy'.  This is VERY VERY VERY uncommon for him.  (The kid doesn't 'get sleepy' even at bedtime!  He stopped napping right at 24-months-old because he does not like to sleep!).  The lethargy lasted for a few minutes, but then came back within the hour, and again lasted a few minutes.  The doctor said 'lethargy was not a symptom of an allergy reaction' so he was not concerned....but I've known lethargy TO be a symptom from my 'very mom-professional research'.    :-)    Also, one day last week, Kyzer had a throat issue.  He, all of a sudden, grabbed his throat like in a choking manner.  I, of course, freaked a little.  He said that 'it felt weird' and that it felt better when he swallowed.  Within 30 seconds, it felt fine.   The doctor said he felt fine proceeding with the updose that day....so we did.

Chugging water after swallowing his dose.

Little brother patiently waiting.

His updose went fine.  They only have us stay for 45 minutes for observation after he swallows it.  He still does not like the taste of grape kool-aid.  If that is the only 'problem' we have, then I will take it!!

Going home!!!

This is what it looks like to measure out the dose at home.

You have to stick the syringe into the bottle, 

tip the bottle upside down, 

then pull down on the syringe to the desired amount.  

On March 12th, Kyzer turned 12!!  

I can't believe he is 12!!

1st Updose

On February 28th, Kyzer had his first updose appointment.  We left our house at 6:15 am and arrived 20 minutes early for his 9:00 am appointment.   He climbed into the back and got cozy with his blanket and pillow until we had to go in.  It was a nasty, rainy day.

 Resting in the back of the car.  

It was a bit less daunting prepping for this appointment because I didn't have to pack food for all day.  When you do updose appointments, you should only be there for an hour...if all goes well.   I had him eat a donut at 7:15, then 2 more donuts right before we went into his appointment.  The point of this was to make sure he had carbs in his belly before the dose.

We first went into an exam room.  The nurse took his blood pressure and checked his heart rate.  Then the doctor came in and listened to his lungs.  Kyzer has been fighting me on taking his Flonase for his seasonal allergies so the doctor reiterated why it was important to take it.  Told him it wasn't just 'mom's orders to take it, but doctor's orders too.'  The doctor told me that since Kyzer is turning 12 in March that he can now take adult doses of medications (for his Allegra and Benadryl).

Getting his blood pressure checked.  

So his dose was given at 9:15.  It was the same amount of milligrams of peanuts as his first dose, but this time it was double the milliliters of liquid.  He so does not like grape kool-aid so with the double the liquid, he so does not like the taste even more now.  However, he doesn't care.  He will do whatever it takes to become desensitized to peanuts.

So happy to be on this journey!

We will go back in two weeks to have his next updose.  On the way home, he asked if we could stop at Popeye's for lunch.  It's one of his favorite restaurants.  When you are brave enough to put a potentially lethal object into your mouth in hopes of tricking your body into thinking it's no longer allergic to it., your mom says, "Absolutely!" 

He loves fried chicken!

Logistics Issue

Today was the first time we had a bit of a 'logistics issue' with dosing.  Kyzer normally takes his dose around 9:15 am.  This morning, though, we had to be out the door at 8:20 am because his brother had evaluations for soccer at 9:00 am.  Then right after the evaluations we had to rush to his brother's 10:00 am basketball game.

Tom, my hubby, stayed home to sleep because he drove for Uber until 3:00 am.  He was just going to walk over to the basketball game since it's close to our house.  (We are a one-car family).  I thought about leaving Kyzer at home with him, but then I was worried about his dad actually waking up to give him the dose.  Then I also worried about Kyzer walking to the game since it might increase his heart rate too much.  So I thought maybe his dad could give him his dose right before he left to come to the game and he could stay home by himself and not walk over to the game....but then I remembered he can't be alone for 2 hours after he doses.

Kyzer has to eat with his dose (preferably a carb-filled meal).  I thought about packing up his dose in a cooler with an ice pack (because the solution needs to stay cold) and give it to him while we were at the soccer evaluations, but then I didn't really have anything to pack him to eat...nothing easily portable.

I finally decided it would be easiest to wake him up, have him eat a bowl of cereal, give him his dose at 8:20 am, then make him come with me to his brother's activities so I could observe him for 2 hours.  (The reasons this wasn't my first thought was because (1)  He is not a morning person.  Getting up at 8:00 am is early for him.   (2)  Dosing at 8:20 is a whole hour earlier than when he usually doses, and we try to keep his doses right at 24 hours apart).

So really, it wasn't really ever a 'problem'.  It's just something we have to think about and figure out the best way to go about it.   Everything was fine and worked out.

On a little side note, he cut his long hair off today!   (He wanted his haircut.  He just doesn't like me taking his picture).

BEFORE

AFTER

OIT HAS STARTED!

Kyzer started OIT on Tuesday, February 7th.  The day did not go as I imagined.  Tom, my husband, was sick (again!) so he didn't come with us.  Since he stayed home, I decided to leave Hendrick at home.  I knew it was going to be a long day in the allergist's office, and he wasn't going to have fun.

I got up at 5:45 am and woke Kyzer up around 6:15 am.  We left at 6:30 am to make the 9:00 am appointment.  I had not slept great the past 2 nights.  I, myself, was not feeling great.  I was a ball of nerves, but I was also dealing with the sudden loss of my dad.  I was a walking zombie.  I was overwhelmed with grief.  Stressed to the max.  My head was pounding.  My body was hating me.

All of this overshadowed what an exciting day this was for Kyzer.  I did the best I could.  I had imagined the day more joyful.  I had imagined me ordering him a t-shirt with a powerful statement on it about 'crushing peanuts'.  I had imagined us playing 'fight songs' about courage and perseverance.  Instead, during his appointment, I was receiving texts about my dad and about funeral arrangements.  My stomach was in knots.  I could barely hold my eyes open.  I just wanted to curl up into a ball in a dark room and stay for days.

Alas, the appointment started and ended with no excitement...and this was a GREAT thing!!  Kyzer was super brave.  Never hesitated when taking a dose.  He started with a dose, and then it was slowly increased 19 times during that day.  We were there about 6.5 hours total.  The dose is liquid form right now which is grape kool-aid which we discovered he does not like.  (My kids have never had kool-aid :-)

Kyzer kept busy watching videos on his i-pad, playing Solitaire, getting his Valentine cards ready, and I managed to play a few rounds of UNO with him.  We ate the lunch I brought for us (tortellini) and snacks.  It was a nice, boring day.  (After his 7th dose, he did complain of having tummy pain, but it subsided very quickly on it's own).

He has now taken 8 doses at home with absolutely no issues.  Nada.  He doses in the morning around 9:15, and then just sits and watches videos for 2 hours...or we start school work.  He has to stay calm the first 2 hours after dosing.

We did have a crazy thing happen over the weekend.  We went out of town for my dad's 'Celebration of Life' get-together.  We stayed in a hotel, and the hotel refrigerator completely froze the peanut solution rock solid.  I panicked thinking it was ruined.  I texted his allergist asking what to do, and he very promptly texted me back.  Told me to just let it thaw, shake, and dose.  That's what we did, and all was well.

Picture of the solution after 

it had thawed out at the hotel.

Kyzer's next appointment is February 28th.  This will be his first updose appointment.  THIS is the appointment (and every updose appointment) that will stress me out.  Flashbacks of his initial reaction to tasting peanut butter will be what I will be remembering.  That is something I never want to relive.  For now, we are celebrating that he has been safe while taking his current dose!

First day of OIT complete!!

Nut Challenges!

On January 26th, I found myself waking up my boys early so that we could once again make the 2-hour drive to Cincinnati.  They were going to do oral food challenges at the allergist's office!


I honestly amazed myself for not cancelling the appointment.


Why did I not cancel the appointment?    Because Kyzer desperately wanted to find out if he truly was allergic to tree nuts.  Do you know how much courage it takes to willingly put something in your mouth that you have been told all your life could cause you serious harm?  LOTS of courage!  He was so excited, and I couldn't take that away from him.  It's not that I didn't want to know the answer too.....it's just that I know too much.  I'm a very active member of the online allergy community.  I read so much.  I see so much.  I knew that my boys could leave the allergist's office in an ambulance.  I knew they could require multiple doses of epinephrine.  I knew that if they suffered an allergic reaction that it could traumatize them.  Kyzer already suffers from allergy anxiety so I was worried it would make it worse.


The closer the appointment date came, the calmer I got.  I was still nervous, but I knew we were doing the right thing.  I put my faith in God and my trust in the allergist and the nurses.  To help with my anxiety, I decided that we would stay in a hotel in Cincinnati near the children's hospital the night of the challenge.  I didn't want to risk the boys having a delayed reaction on the 2-hour car ride home.  There is basically nothing between Cincinnati and Columbus.  Plus, I knew we would be leaving the allergist office around rush hour traffic.  I didn't want to be stuck in traffic anywhere.  Also, Hendrick was terrified of doing the nut challenge so being able to give him something to look forward to.....POOL IN THE HOTEL!....helped him tremendously!  They both love staying in hotels so it was a fun treat.

I packed like we were going away for at least a week.  So.much.stuff.  Mostly food!  I knew we would be at the allergist's office all day so we would need lunch and snacks, but the boys also would need things to eat while they were eating the peanuts and tree nuts.  Thankfully, there was a microwave there so we could heat up lunch (leftover spaghetti).

 It was INSANELY weird to buy these items for the challenges!

(You bring your own items to the doctor's office.  

We, however, could not find any walnuts in the shells or 

walnuts not cross-contaminated with peanuts, 

but the allergist's office had some we could use).  

Poor Hendrick.  

He was terrified before the challenges.  

Kyzer was super pumped!!

They have two tables kinda out in the hallway across from the nurse's station.  

That's where you do any type of testing....skin/food challenges/OIT.  

 They had their heart rate and blood pressure 

checked before starting the challenges.

They played games together while they waited.  

This was his third dose of almond!!

A whole almond!!

The first dose was a 1/4 almond.

Second dose was 1/2 almond.

Third dose was 1 almond.

Fourth dose was FOUR almonds!!

After he successfully ate his first 2 doses of almonds,

his fear subsided!

FOUR almonds down!!!

We were so excited and hopeful at this point!!

You can see the nurse's station in the background. 

FOUR almonds down!!!

(Tom didn't take the day off of work.

He just brought his work with him)

Moving onto walnuts!

Hendrick HATED walnuts.

Like HATED HATED them.

I was super impressed he got the first dose down.

The allergist decided not to torture him with them, 

declared he passed after just the first dose, 

and let him move onto dosing peanut butter.

Kyzer was NOT a fan of walnuts either, 

but he was able to get them all down.

He SOOOOO wanted to pass!

This is how he ended up taking the 3rd and 4th dose of walnuts....

in vanilla pudding.  

I didn't get any pictures of Hendrick challenging the peanut butter or Nutella or pictures of Kyzer challenging the Nutella....but they passed!!!!     Hendrick was not a fan of peanut butter, but thankfully I brought graham crackers and chocolate chips to go with it.  Kyzer LOVED LOVED the Nutella!  He ate it on graham crackers.  

Here was their reward!!

HOTEL POOL!!!

We also scored major 'Cool Parent Points' because our hotel was in walking distance of the restaurant 'French Fry Heaven'.  Hendrick's most favorite food in the world is french fries!  He would eat them for all 3 meals plus snacks every day!  Of course that's where we took them for dinner!  One of Kyzer's favorite food was served there too...fried chicken!   (Tom and I opted to eat our dinner at a Vietnamese restaurant that was also in walking distance to the hotel).  

We had a great, fun, cozy night in the hotel.

The boys swam in the pool.

We popped popcorn, and watched the next episode of "A Series of Unfortunate Events".  We all slept great too.

We were all so happy and relieved!!

We knew our world had changed that day!!

Here's Kyzer the next morning drinking hot chocolate.  

We made it through the night with no delayed reactions!!

BREAKDOWN OF COST

Everyone's cost will be different.  It's all based on your insurance plan and your deductibles.  Food challenges are timed tests.  You don't know how long you will be there until the day is over.  You could react on the first dose, and then that would end your test.  Or you could keep passing each item you are challenging, and be there 6 hours like we were.  Here is what we will have to pay.  

First 120 minutes of testing = $104.78

Each additional hour = $73.83

X2 since we had two children doing the testing

Testing took 6 hours.

TOTAL COST = $800 (out of our empty pockets)

Skin Testing

On December 9th, Kyzer and his brother, Hendrick, had skin testing done.  Kyzer was skin tested for all tree nuts.  Hendrick was skin tested for peanuts and tree nuts.  (This day was also considered a 'Consult Day' for Hendrick to officially become a patient of Dr. Greiwe).


Hendrick is 7.5, and he has never had peanuts or tree nuts....simply because his older brother was allergic to them.  He had been skin tested for them twice before (once at 6 months old and again at 3), and each time was negative.  We almost had bloodwork done for him when he was three (we took him to a different allergist than Kyzer went to).   HOWEVER, he had JUST had bloodwork done for other reasons, and it was extremely traumatizing so we didn't want to put him through it again so quickly.  Then, life just happened.  Then, we moved into an RV (for fun, on purpose!) for 2 years and traveled.  It was just easy to avoid peanuts and tree nuts with Hendrick since we already did for Kyzer.


We had to wait until December for Kyzer to be able to have the skin testing done.  He is allergic to all trees, all grasses, all weeds, mold, dust, cats, and dogs too.  He also has allergy-induced asthma and cold-induced asthma.  He takes Allergra daily.  You have to be off all antihistamines for at least 5 days before skin testing.  The only time Kyzer can go off of Allergra is once the temperatures hit the freezing mark outside.  (One major reason he and I love winter in Ohio!).  So we patiently waited until December came.


Back to December 9th....Hendrick was a nervous wreck because some how he remembered the skin test he had done at the age of 3.  The pricks were all done on their arms.  Hendrick got through it, and each thing was negative!  Yay!

This was Hendrick's arm right after he was pricked.  

Everything stayed negative.

Kyzer's skin test results were 'inconclusive'.  The doctor deemed him to have sensitive skin.  I forget the medical term he used for it, but basically he explained that anything that touched Kyzer's skin would cause redness.  He demonstrated by making an ever-so-slight scratch on Kyzer's arm that promptly turned red.  Everything he was tested for showed the same redness and the exact same raised swelling (wheal).  Everything matched perfectly, and that is just not right.

Kyzer getting pricked one-by-one.

(She was marking his arm with a pen here).

SO....the allergist said that he was good to go to challenge tree nuts!  Almonds, walnuts, and hazelnuts.   He also said Hendrick could challenge peanuts, almonds, walnuts, and hazelnuts.


I stood in that office and made an appointment to come back so the boys could put peanuts and tree nuts IN their mouths, but I honestly didn't believe I would bring them back.  I was TERRIFIED.  I was thinking to myself as I was making the appointment with the receptionist, "Go ahead.  Put us down.  But I'll be calling to cancel."