Red Sneakers

The family of the child who died this past Thanksgiving has been sharing more details with the public to help save other children.

She said they were never really given info about what to do and now it's too late.

Just like Natalie.

Natalie was a 13 year old girl whose dad is a doctor. She was at a family camp she's been to many times before. She grabbed a rice krispie treat thinking it was a 'rice krispie treat'. She bit into it and tasted peanuts and spit it out right away. Her dad gave her benadryl. She seemed fine and returned to the party. 20 minutes later she was not so fine. Her dad gave her one epipen. He gave her two epipens. He had to break glass to get into an office to get to a 3rd epipen that was locked in there. (The dad ended up tearing up his arm and needed surgery because of that.) It was too late. Natalie died. This was her first and last serious allergic reaction.

Because of what happened to Natalie- many doctors changed kids' allergy plans to NOT include benadryl in it but to instead go right for the epipen. You only have a few precious moments to get that epipen into the person to buy time to get to the hospital---- after a certain point there is no turning back and an epipen will not work.

When our OIT doctor gave Coby benadryl when he was having a more severe skin reaction to the skin test than he had hoped for, I was against it. I said, "but Natalie.... how do we know you aren't hiding something that we need to see progressing G-d forbid...." But I gave in because we were going to stay at the doctor's office that had everything the hospital did just in case. He added some steroids as well and Coby was fine.

When Coby had the combo of 104 and strep and antibiotics and dosing and one night he was extremely itchy and broke out in a weird rash all over his stomach and back, we had sent a picture of it to the doctor and again the doctor said, "give him benadryl to keep it from spreading," but I refused. I was no longer in a hospital like setting. I was home and I was scared benadryl would mask anaphylaxis as it did with Natalie and I needed to know if this reaction would spread. Three hours later, when Coby was scratching himself bloody I relented and gave him the benadryl hoping we were basically past the point of anaphylaxis anyway.

Benadryl terrifies me.

Oakley. Once again it happened- similar story. First reaction. The boy ate a bite of cake and thought 'uh oh, may have had nuts'. He felt FINE. He only had one small hive appear. Was given benadryl. Hive went away. He felt FINE. A few minutes later stomach pain, vomiting, chest pain. EMTs came, tried to give epinephrine. Too late. Heart attack. Gone. The parents said they didn't feel prepared. They didn't know when to use their epipen. They had it, but didn't know. They never heard about Natalie. They weren't taught. They didn't know. And now this precious child is gone. There are no second chances. Oakley age 11, gone.

This family is starting the red sneaker campaign to help promote awareness. Oakley loved wearing his red sneakers and they are hoping this campaign will raise awareness and help keep other families from going through what they did. Until there is a cure, in order to save lives, we need awareness. An allergy can come out of nowhere. Someone can have gone through their whole life never having experienced anaphylaxis- until they do, and it's the one that kills them.

PLEASE learn to recognize the symptoms. Always err on the side of caution. EPIPEN first.

And this is why we have to give this OIT thing a shot. This terrifying roller coaster of a ride that someone in my group correctly labeled as a " COMPLETE AND TOTAL MIND F--K" (fill in the blanks). It is harrowing and exhausting feeding your child increasing increments of what nearly killed him and watching and waiting. Not knowing, terrified, but hoping. So many unanswered questions and what ifs but the bigger what if NOTs. It is so scary. G-d willing we will be able to updose Coby this Thursday since his nose and throat seem to be better than last night. Each updose brings on more fears of reactions. Each updose brings him closer to safety. MIND F--K indeed.

OIT may be the closet thing to a cure there will ever be. "Strict avoidance" cannot be "THE CURE". Because that works... until it doesn't. One wrong bite. People who don't want to be bothered, a mismarked label. A cross contaminated door-knob. A single mistake.

We got lucky with our Coby-bear. We didn't know he had his allergy until he had his life threatening reaction. That Thursday night in the den, near the desk I saw it begin to progress- it was as if it was going in slow motion and I was watching a movie screen. One small hive appearing beneath his eye on his upper right cheek. "This can't be happening." Runny nose. I dawdled. Some strange throat noises. I called Yitz who was on his way home from work saying, "I think something may be happening." Teary eyes. We didn't even page the doctor until Yitz was home about 10 minutes later. "This can't be real, right?" When she heard Coby coughing, sneezing- and I guess in a way choking in the background, she said, "CALL 911 NOW!" A few days later she admitted to us that she didn't think he'd make it through the night. How she was not able to sleep that night until she tracked down which hospital he went to and knew he was okay. 

We had a good 20 minutes (or maybe it only seemed that long at the time) til that first hive appeared. But I didn't know. I wasn't sure. And since he was never diagnosed we didn't have an epipen in the house (and neither did the ambulance). We are sooooo lucky Coby is okay. We were warned, 'next time it will be mere seconds before his throat closes up.'

We got lucky.

We were lucky it didn't happen a couple of months earlier when we were on an auto train for 17 hours straight. 

We were lucky it didn't happen while we were in an airplane over the ocean thousands of miles away from land.

We were lucky that his blood pressure only began plummeting once we reached the hospital.

We were lucky that the wheezing only started in the ambulance and waited until we got to the hospital before it began to really progress.

We were lucky he only asked for two goobers--- what would have happened if he ate a handful like most kids?

We were lucky this hospital knew to keep him there for several hours watching for a biphasic reaction (which occurs 1/3 the time- several hours after initial reaction often worse than the first)--- after all we were clueless and knew nothing about that at the time (and learned that many hospitals don't even know about biphasic reactions and parents have to fight to keep their kid there for those 6 hours.)

We were lucky that his body only began really swelling once we got to the hospital.

We were lucky that single hive held on until we got to the hospital and only then spread over his entire body from the top of his scalp down his legs unlike anything I've ever seen in my life.

We were lucky we got to bring our boy home the very next day with three days of steroids he'd need to take but otherwise a happy and healthy toddler.

We were lucky.

The only difference between Coby and Natalie and Oakley is that we. got. lucky.

Natalie is all of our's daughter.

Oakley is all of our's son.

They are food allergy children just like our own.

No real difference at all.

Other than luck.

It could have been him.

We were no different. We just got lucky.

PIXIE DUST

Monday night I started worrying (once again) that we perhaps would NOT be able to updose this Thursday as originally planned. (well not originally- since originally we were supposed to have our first updose nearly a month ago....) He is still doing those mouth swipes and scratching after dosing but I'm now taking those in stride and not letting them worry me (too much) knowing that he 'reacted' the same way to the placebo dose so I thought we were good to go for this Thursday--- FINALLY!!!!

...BUT- (there's always a 'but', isn't there) Coby has been having a stuffy nose, especially at night and there's a 'machloket' about updosing when one has a cold. Many doctors say that as long as it's just nasal congestion you can updose, while others say no updosing at all.... Monday night Coby also said, "now my throat hurts when I swallow." I let out a big inaudible internal scream that did not escape my lips as I saw our chances of updosing flying out the window. 

Coby went to bed but got up several times saying, "I can't sleep- I can't swallow unless I'm sitting up so I have to keep sitting up." HUH? Don't remember hearing that one before. I gave him an extra pillow and he went to sleep. I did check on him several times worrying that perhaps this 'swallowing' thing was a delayed reaction (and kept the baby monitor on when I did go to sleep) but he was fine (other than a bit of snoring). I went to bed feeling like my bubble burst. Feeling deflated  with hope dwindling once again. 

After all- nasal congestion together with this weird swallowing/throat thing--- what are the chances we can go ahead with our updose this Thursday? I texted Yitz to tell him we'll have to give our dr a call on Wednesday if Coby is still complaining...

BUT- is it in fact a cold? Could it just be his environmental allergies? Maybe the flozane and zyrtec aren't enough. Grumble- I hope they are enough--- I read that kids actually can get addicted to zyrtec and will need to be weaned off carefully when they are through- I really don't want to add another something on top of all the other somethings. But if it is his environmental allergies and not a cold- we need to find a way over this hurdle! Sigh.

When Coby woke up Monday morning he seemed okay- he said his throat was basically fine- but who the heck knows? Such a roller coaster ride just in our attempt to get to 1/3,000 of a peanut.

Since Yitz is in Florida- and got to go to Disney Springs (Formerly known as downtown disney)

Downtown Disney (lucky boy)

...all responsibilities are on me this week. Usually Yitz drives Coby to school but obviously not this week. And of course it's crappy weather today (and tomorrow). And of course now is when my back decided to act up for the first time in months. So I took some naproxen and slapped on one of those medicated back pads and we get ready to leave. We go outside into the icky rain- I lock up... and--- my Tinkerbell key snaps in two with the bottom half getting stuck in the lock. ARE YOU KIDDING ME? NOW?! When Yitz isn't home and I don't have a spare key? When the weather is disgusting and wet out there? NOW?!

Oh Tinkerbell- always causing trouble

 Luckily Mikey's school is next door to Coby's- so I call Mikey so when I drop off Coby, Mikey runs me who HIS key that he thinks is the den door key--- YES!!!! I grab it, drive back home before going to work- and try to get into my house. NOPE. Doesn't go into the den door. Doesn't fit into the back door. Damn it- it's a key to our front door that I can't get into b/c my key is stuck in it!!!!! Drive to work hoping there is no thief lurking around who knows how to use half a key to jimmy a lock open and steal everything we have....

I finish work. I don't have an umbrella with me- because I figured a quick run from house to car and back doesn't warrant one. I'm not even wearing waterproof shoes. I decided to wear my red converses in honor of the boy who died this week from his nut allergy. His mom is trying to start the red sneaker campaign to raise awareness for food allergies because Oakley always wore his red sneakers. If you want to learn more about that: http://www.wptv.com/news/region-c-palm-beach-county/west-palm-beach/local-family-warns-of-dangers-of-nut-allergies-after-11-year-old-dies

Me sporting my red shoes

So I drive home realizing I'm locked out without anything- I don't even have a credit card on me to bring my boys to the pizza store if we can't get in before dinner. I don't have a phone wire and my phone is down to 40%. I don't have an umbrella. AND CRAP I OBVIOUSLY DON'T HAVE COBY'S DOSE WHICH IS NOW BEING HELD HOSTAGE INSIDE MY HOUSE INSIDE MY FRIDGE. I HAVE TO GET IN THERE!!!!!

Thankfully Lori to the rescue!!!!

She brought a big umbrella a couple of pliers and WD40--- sprayed the lock, and pulled and in under two minutes she got my (half) key out!!!! I was able to use Mikey's key I grabbed this morning and got into the house. Crisis averted!!!!

So back to my regular scheduled programming of OIT worrying... Yitz- I hope you are enjoying Florida and Disney---- you definitely are having a better week than I am- you with your 80 degree weather and Disney magic.... So how about you send some disney magic our way so we are able to go ahead with Thursday's appointment and Cobes is able to to updose without any side effects!

Meanwhile off I go to back through the depressing rain to pick up Coby and go through another day of dosing. So hoping it goes well- with the cold/nose/throat/swallow thing magically disappearing so we don't have to call the doctor tomorrow about Thursday. Can really use some pixie dust Tinkerbell. After the mischief you pulled this morning you owe me!!! 

Another child dies

Thanksgiving weekend is coming to a close and I just read about another sweet child who died from his nut allergies. He accidentally had a bite of cake that had nut residue in it, suffered three heart attacks, was put on life support- and died. One wrong bite and a child is now dead. Again.

Before Thanksgiving and really all holiday/family gatherings- people post to have a safe holiday. Inevitably someone is posting about having to skip a family gathering OR going to a family gathering but having a member of their family making fun of their child or even putting out their child's allergen purposely exclaiming, "it's dad's favorite snack, so deal." It seems that every holiday some relationships are put to the test and a child always dies. As a mom this is heart-breaking and as a food allergy mom this is terrifying.

I look at pictures of this little boy. His mom posted a family picture just hours before he died. And it can happen to anyone.

We need OIT to work. There may never be anything closer to a cure than OIT. And it is terrifying! Over here we are doing mostly okay. Coby is back at his take home dose (and hoping to be able to finally go back to the doctor this Thursday to updose). I did one more day of my 'spying' on him but still am unsure at what causes him to have his symptoms.

It seems the busier his hands are kept/the more entertained he is the less likely he is to 'swipe' at his mouth... but since he has a small cold he is wiping at his nose a lot- even hours after dosing. Today I heard whistling as he breathed and I had to comfort myself saying, "It is not wheezing- it is his nose, it's not his lungs, he's fine." Maybe all the lip swiping is a mixture of habit, some itchiness and anxiety. 

Someone in my OIT group recommended a great book for children who may be experiencing anxiety- so of course I got it for him. We did the first two chapters together. Chapter two asks him to draw something he is worried about and this is what he drew: 

"This is a picture of me dosing. I am worried that it will take longer because I must downdose."

At first he just drew a picture of "this is me dosing." When I asked him WHY that worries him- I was sure he'd say because he's scared of reacting, but instead he told me he's worried he'll have to keep downdosing and that his body won't handle it and they'll make him drop out and he doesn't want to drop out. Awwww. I reminded him (and myself) that downdosing is okay- because that helps keep his body calm and as long as we down-dose when/if necessary- we can get there. It's NOT a race.

Meanwhile we got to have some family time (even Josh was home) over Thanksgiving. For us family time is Disney time, so we started the day with Moana. 

 

(After we got home Yitz was saying how he needs to pack for his work conference- which this year would be taking place in Orlando!!! Well if you know me, you know going to Orlando without any plans to visit THE WORLD is just criminal- so I surprised Yitz with a day at Disney- and he is there right now!!! LUCKY BOY!)

But back to Thanksgiving day itself- after surprising Yitz with a trip to the world we took our annual trip to (safe) Dougie's 

and while we were there Coby decided to tell us what he is thankful for:

1. Family  2. Food   3. Drink  4. Shelter  5. OIT

And who knows- maybe next Thanksgiving we'll be able to eat where-ever we want and the world will be more opened for him. But most importantly, we do this to protect our Coby-bear. That is first and foremost in our minds. Yes we hope OIT can be life-changing, but most importantly we NEED it to be life SAVING. Right now my heart breaks for the family whose child will never experience another Thanksgiving.... Because of a nut allergy. The mom is begging people to learn and understand the seriousness of food allergies and how to respond to a reaction. She said she hopes losing her child will teach others the seriousness of it so her child will not have died in vain. She reminds the public that what you may see as 'inconvenient' or 'over-reacting' is life or death to another.

Because what are we most thankful for? Family. Your children. There is NOTHING in the world more important than our children. Hug them tight. Time is fleeting. Time is precious. Cherish the moments you have with them. Because unfortunately, you never know.

Rest in peace little Oakley...

Spy time

Last night I was reminded why it is a necessity for us to explore this OIT and try to protect our Coby to the best of our abilities. One can never 100% trust a label.

Yay "made in a peanut free facility!" Many people would grab the item and not bother reading the label completely, but go ahead, look a few lines above to "allergen information"---- "CONTAINS PEANUTS" WTH?

Each day I am reminded in one way or another how important it is for us to march forward in this journey. And yesterday we got to go back up to Coby's original dose of 50 micrograms. I explained to Coby how 50 micrograms is actually smaller than 1/6,000 of a peanut. Coby gasped and said, "But that's smaller than a grain of sand!" Indeed it is!

And so I observed Coby for that first hour and everything seemed to go okay. WOOT WOOT! "Okay" meaning some scratching and lip rubs etc. but it didn't seem any different than the day before. And remember this was DOUBLE THAT DOSE! CAN this actually work? Is it possible that FINALLY next Thursday we'll really be able to go back to the doctor for his first official updose?! That would take him up to 100 micrograms (1/3,000 a peanut)! (Though honestly, Coby did already have that dose on day one, but since it caused so much scratching and itchiness that is where the doctor called it a day and lowered him one level for his take home dose.)

It would be so exciting if he would be able to tolerate that 100 microgram dose so the next updose would be his first real one to a level he never was at before (notwithstanding the time he ate the two goobers that almost killed him).

Okay Stacey getting ahead of yourself again!

 And onwards we march.

So after doing the placebo experience and learning that some of the symptoms he has been experiencing are not a PHYSICAL response- I wanted to test it further. Why is he itchy? Why are his lips wet? Is it due to his own anxiety knowing that he is consuming his poison? Is he absorbing my own anxiety as totally separate from his own? Or is it because I sit on the couch for an hour just watching him that he feels (subconsciously) he has to 'put on a show'?

So we borrowed a baby monitor with a tv screen so I can try to figure some stuff out. We set it up in the den with it barely being visible- but I also purposely set it up two nights early so by the time we actually used it, it would blend into the furniture and Coby would be none the wiser. In the end Coby never even noticed it! 

peek-a-boo I see you!

Oh yes, so add 'spy' to my many hats I wear in that single hour. 

So when Coby got home from school I told him that I was going to give him his freedom in the den after dosing. As long as he does his 'rest hour' (it's actually two hours but most observation is in hour one) he will get the den to himself. At first he was all excited about that. He dosed, went to the couch and said, "NOW GET OUT!" and pointed to the door. LOL. But as I got ready to go he said, "Stay or I'll miss you." Awwwww. Hugs & Kisses Cobes- see you in an hour. Enjoy me not breathing down your back!

And so- I went upstairs and spied on my boy. 

 I loved seeing his cute little self on that teeny tiny screen. What can I say, my heart melts whenever I see him. And for the next hour 2 levels up I watched my boy. 

Though actually, within the first few moments of starting, Coby decided to flop his body the other way around so all I could see on the screen was his back and legs. I texted Yitz (who worked from home today) to get to the den and figure a way out to flop him back... and so he did.

Coby lay back down... but then he lifted the phone he was playing on--- and it completely hid his head from the screen. OYSH! Once again an SOS text went out to Yitz who went back downstairs and first tried to convince Coby to just watch tv (so no phone blockage)- but Coby said, 'nope'. Yitz then plumped up a pillow for Coby (to give his head some 'height' and even tucked him into a blanket- talk about the royal treatment! But still Coby's head was blocked by the phone, so finally Yitz just told him to sit up and the remaining 55 minutes he remained visible! 

Of course the first few minutes when I couldn't see him and I was stressing (what else is new)- anytime Coby's hand moved towards his face I was trying to guess if those were lip swipes or what- but I chilled myself out knowing even if it were chances are he's fine.

In the end I'm not sure if this experiment taught me anything or not. I did see a whole bunch of scratching- dozens of times in fact. More than other days! But while I did see the mouth thing- I believe it was fewer than 15 times in total which was much less than other days! I didn't see any eye rubbing either. And remember folks. he's back at his starter dose which is DOUBLE the dose he was on two days ago so an increase in some (real) symptoms are to be expected for a little bit.

I know I'm going to have to learn to differentiate which symptoms are due to his body possibly reacting to his poison... and which ones are from the stress of it all. Don't know how I'm going to figure that one out but I feel we made huge strides in this journey over the last few days and I need to accept that as a victory for now.

I will probably do this 'spying thing' one more time tomorrow to see if I can notice more of a difference between me being in the room or me not being in the room with him.

Meanwhile tomorrow is Thanksgiving- and Josh is now home- yay! I haven't seen him in over 5 weeks. This will be his first shabbos home in 12 weeks! He said he has lots of college work to do- and Mikey says he has lots of work to do too--- but I don't care- I'm grabbing all my boys for some family time tomorrow and we will start off the day by heading to the first showing of Moana! (because disney time is family time in our household) Why the first showing? Well besides it being almost half the cost--- the first movie of the day is always the safest--- the theatre is the cleanest and there's less of a chance of finding a stray peanut in a seat. We will still use a baby wipe to wipe down his seat before allowing him to touch it but the first movie is "safe enough". Wouldn't it be nice if this OIT thing worked and we can see a movie whatever time in the day we would like--- how awesome would that be! It's those little things that matter!

AND A HAPPY THANKSGIVING TO ONE AND ALL! 

Look at me- even using the "peanuts gang" here. We're coming for you Snoopy!!!!

What a difference a day makes!!!!

HOLY FRIGGIN' MOLY I CANNOT BELIEVE WHAT A DIFFERENCE A DAY MAKES!!!  This time yesterday I was POSITIVE we'd be downdosing today.... AND NOW just 24 hours later---- we are actually UPDOSING back to our original take home dose tomorrow!

WHAT THE HECK????? Talk about a 360 degree turn around!

In order to test my hypothesis (written in my last 2 blog posts) our doctor agreed that we should give Coby the placebo dose at the time he normally gets his REAL dose (and push off his actual dose by up to two hours).

Coby came home from school and I told him how we're changing it up again and going to try giving him two mini doses to see if that makes a difference. I had it all set up. I had the syringe filled with the grape juice and his cup of water and applesauce waiting. In addition, in order to make it look real- I had his purple jar of peanut dose out of the fridge with the cover off so it would truly look legit...
...but he was onto me.

Coby, "How come the color is a little bit different than usual?"
Me, "Huh? Oh I guess a tiny bit of water must have been left in the syringe so it diluted the color a bit."
Him, "Oh- whatev!" And he 'dosed'.
Him, "How come it tastes a little bit different?"
Me, "You just had a ring pop on the way home from school- you know that changes tastes of things."
Him, "Oh right." (Pheeeew!)
Him, "Well it smelled a little bit different too!"
Me, "What?!"
He starts to laugh, "I know, I know- I'm just getting a little carried away here."

I then proceeded to watch him for the next hour.

Resting after "dosing"

I think my heart was pounding even more for this hour than when he takes a TRUE DOSE. And when he started scratching at his skin and wiping at his mouth just a few minutes in to the hour, my heart did a flip flop.

COULD IT BE?????

I proceeded to take minute by minute notes. By the end of the hour he had:
- Swiped at his mouth 30 TIMES (compared to yesterday's 49 after a true dose)
-Rubbed at his nose saying 'it is a bit stuffy': 11 TIMES (more than after a true dose)
-Rubbed at his eyes: 2 TIMES (a bit less than after a true dose)
-Scratched at his body: 16 TIMES (a bit more than after a true dose)

I kept texting Yitz during the hour saying, "WHAT IS HAPPENING HERE?!" I could NOT believe it. I mean, I had a gut feeling that this may be the case- but actually witnessing it. HOLY FRIGGIN COW!!!!

After the hour was up Yitz called our allergist (I had to leave to get Mikey so I couldn't be on the speaker phone fessing up to the reality of what just happened to the doctor with Coby right there in the back seat hearing the entire conversation)

(And of course as Murphy would have it.... since I am SUPPOSED to get in the (true) dose at the same time each day- but in extenuating circumstances can push it off by an hour--- MAXIMUM two hours- the highway was a parking lot so I had to get off route 4 'waze'ing it to school through the back roads- and the round trip ended up taking me an hour instead of 45 minutes--- so I ended up getting Coby's dose in just one minute short of the 2 hour max rule. Talk about stress..... Haha--- I actually had my annual checkup at my GP today and she wanted to know if anything is causing me anxiety. Ordinarily I would say, 'nah- I'm fine' (even if I wasn't)- but this time I admitted to this OIT thing making me insane!)

So anyway Yitz calls me back and tells me, "The doctor says we can go back UP to his regular take home dose tomorrow!" WHAT ARE YOU SAYING?! WE WERE FRIGGIN GONNA DOWN DOSE AND NOW WE ARE GOING BACK UP TO WHERE WE STARTED???? IS THIS REALLY HAPPENING?

The doctor said that since Coby was on this (original) dose for several days before we had downdosed to the 1/12,000 level we can updose back up to the original dose here at home and if it goes well--- next Thursday we can come back into the office for his FIRST OFFICIAL UPDOSE!!!!! (I know I know- once again rein it in Stacey- do not get ahead of yourself!!!!")

The doctor told us the BIG reactions to watch out for (besides obvious anaphylaxis) is wheezing, hives and clearing of the throat. He told us NOT to tell that to Coby so we don't plant any ideas into his subconscious.

He also told us that he once did this placebo test on another child... and the child's entire body got covered in hives... FROM THE PLACEBO!!!!! Just the stress and anxiety and fear of his allergen was enough to cause that reaction!

CRAZY!!!!! I mean I shouldn't be too blown away considering for two entire weeks leading into the start of OIT I was covered in a rash simply due to stress but wow the mind is a powerful thing!

After dosing Coby the second time today (for real this time- but he did not realize the first time was fake)- I said, "Guess what--- you did so good with taking the two doses today- that the doctor said we can UPDOSE back to where you were TOMORROW!!!!" 

Coby's eyes just about bugged out of his head- he was so excited! He did say, "but what about all my reactions,". I don't remember what I said back to him but somehow I brushed that off.

And so again I watched him for the entirety of an hour after his true dose and he actually had LESS symptoms this hour than he had for the last couple of weeks!!!! Coby even exclaimed, "Mommy, my body is cooperating now!"  (I did recognize a few scratches and nose rubs and lip swipes- but probably less than a dozen as compared to the fifty of yesterday!)

I do feel bad because I had to enforce over FOUR hours of 'no exercising' rule as if both doses were true doses- but I had to do that for him to believe both were real. (And despite that he had still questioned the first dose--- when he took the real dose in he even said, "Now it tastes back to normal!"

Resting after (true) dosing again.

I am so excited that we explored this crazy hypothesis of mine and the doctor didn't tell me I was insane! I mean, I know I can be- but this time it was REAL! Such validation!!!!















And so we are doubling his dose back up TOMORROW!!! And I'm so excited--- though come tomorrow I know I'll be petrified. Doctor did say going double can have some TRUE symptoms--- (and how the heck going forward will I know what is a true symptom and what is not?)

People in my OIT group keep reiterating that your child's body needs to be 100% accepting a dose before updosing to the next level- but if Coby is now dealing with these subconscious or anxiety issues- how will I know what would be a true problem and what is not a physical problem after all?

For example a couple of weeks ago his body was covered in "something" scary that required extra medicine to calm his system back down. So obviously something was happening. (though he was dealing with high fever, strep and antibiotics at that point too which always makes things harder on a little body). How will I know what is real and what is not?

This detective mama ain't finished though... I am curious if I can figure out if these symptoms are his subconscious thinking he needs to 'put on a show' for me OR if this is anxiety based. And so I am borrowing a baby monitor with one of those tv screens for a few days- so I can set up a 'hidden camera' for his hour of observation and see if he has all those symptoms even when I'm not (visibly) watching him. (For the next couple of days though since we are updosing him back to the 50 micrograms I think I need to be in the same room as him.)

Is it REALLY possible that we may be able to go in for our very first updose next Thursday? (true that date is about 4 weeks after our original scheduled updose- but going from thinking we were going to have to downdose TODAY and never believing we'd ever get to updose- to the possibility of a true in office updose is HUGE!)

And I realized that in my earlier blog post from today I had posted that this afternoon I would be wearing several mommy hats- mommy, doctor, scientist and psychologist. I forgot to add a crucial one.... DETECTIVE MAMA!!!

However, I don't want to get too carried away because I do need to be able to recognize true and dangerous symptoms and not be quick to dismiss them. This is going to be quite the tightrope act.

But allow me, for just a few hours, to push my fears and anxiety about this aside and enjoy this small (though it feels HUGE) victory!

And once again, I must say: I CANNOT BELIEVE WHAT A DIFFERENCE A DAY MAKES!

Hmmmm I guess the experiment continues

A mom wears many hats- she has many roles. Tonight all at once I am going to need to be a mommy (obviously), a psychologist, a doctor and a scientist.

...we are not down-dosing quite yet....

Yitz did leave to work with the cooler and the ice ready to pick up our down-dose, but I've had a nagging thought the last few days.

WHAT IF unconsciously Coby is reacting because he thinks he is 'supposed to'. WHAT IF he doesn't have control over what he does but the basis is NOT physical?

I've had a couple of disturbing dreams about this whole thing the last couple of nights (shocker) one in which he required an epipen as we were lost in some store but something isn't resting well with me.

I know, I know that this may be grasping at straws and it is very probable that he is indeed having symptoms to his dosing, but I still have that nagging mommy gut that says, 'what if'. What if he likes the attention it gets him? What if he realizes the spotlight is on him that hour (plus) and what may have began as possible real itchiness etc. is continuing for another reason?

We called the doctor today and he actually agreed with us. He said when we describe Coby's symptoms to the doses- what we are describing are not COMMON symptoms of OIT and usually not that far in (close to an hour after dosing at times). Yes, yes- there are a few people here and there who have delayed reactions and who have 'excess saliva' etc. BUT.... How much further are we going to keep down-dosing before testing this theory?

I was actually shocked when the doctor agreed it could be 'emotional' responses rather than physical ones. I thought he'd tell me this is way too far-fetched, but whaddya know... The doctor agreed that before down-dosing I need to test this out and so tonight we will be giving Coby a 'placebo dose' (besides his regular dose). I feel so bad that I will be deceiving my Coby. Ahhhh wonderful mommy guilt.

But I'm gonna have to suck it up and do it anyway. Coby already knows we are fiddling around with the doses trying to figure out what will work so I'm hoping he will buy into the "double dosing" of tonight. As usual when he gets home we will fill him up with carbs and dose him (with the real one) and watch him for the hour before picking up Mikey from TABC and not allowing exercise for 2 hours.

And then at 6:30sh  I am going to do it all over again, ("Coby, the doctor wants us to try dividing up your dose into two today to see what happens)--- but this time with the placebo dose. I will pull some grape juice up into the syringe (his peanut dose is diluted into purple kool-aid so it will look the same) and he will lie down on the couch and again I will observe and wait and watch for that hour---- not worried about an actual reaction with this 'dose', but wondering if he WILL 'react'. If he does 'react' it will prove to be the placebo effect. And if he does 'react' to the placebo dose we can longer sure if he's actually reacting at all to his original dosing...

This will be quite interesting. If Coby has the same reactions to both doses---- then IS it a psychological reaction that he was 'trained' to do in some sense and he IS in fact tolerating the dose? And if it is a psychological reaction--- then in the future how will I be able to determine what is a TRUE reaction and what is not. (obviously a reaction requiring an epipen cannot be 'faked'--- not saying Coby is faking but perhaps is subconscious is causing him to respond). I know we cannot updose until his body is used to the previous dose- and it should take just a few days to tolerate the updose (notwithstanding extenuating circumstances)--- how would I know what's real and what isn't?!

But that is getting ahead of myself- one step at a time, one foot in front of the other- we need to see what happens tonight before my brain jumps to all those other scenarios. Gotta rein it in Stacey!

SO.... we will not be down dosing today. We are to call the doctor back tomorrow and let him know what happens. If Coby only has symptoms to the true dose, then we will down-dose beginning tomorrow. If he 'reacts' to both doses.... I don't know what that will mean. This is definitely gonna be interesting. 

....dare I to hope again? 

**we actually ended up doing his placebo dosing at 4:30 with his real dosing at 6:30

Mini experiment completed... and failed

Well for the last several days we had switched Coby's zyrtec dose to the morning to ensure it would be in full effect come dosing time...
We had HOPED this would be the magic button to make it all fall into place...

...but it doesn't seem like that's in the stars.

We THINK we may notice a little bit less skin itching after dosing but we're not sure. His rash is finally almost cleared up from two weeks ago which the doctor thinks was due to the antibiotics more than the dosing so who knows- that could have happened anyway.

But the 'wet lips', 'itchy mouth', 'stuffy nose' and 'itchy eyes' are still going at full force :(.

It's actually a bit weird because every once in a while we notice him wiping at his lips hours BEFORE dosing. We went bowling today. Since it was icky and cold outside and we had parent teachers conferences at noon and we needed to be home mid afternoon for dosing- that was the perfect activity to fit in between without being stuck at home all day.

Happy boy after scoring a spare!

And at the bowling alley we noticed some of those same symptoms- nose rubbing and lip swiping.... but then again there are foods with peanuts at the bowling alley. Someone was eating peanut m & ms at the next lane over. Coby didn't go up to them and that shouldn't cause an airborne reaction since it's not dusty peanutty food- but who the heck knows anymore.

Today was the last day of our experiment of rearranging medicine times before 'calling it in' and realizing he would need to down-dose. We made EXTRA sure to squirt his dose all the way back to this throat without his lips touching the syringe at all- so we would know if he has 'wet mouth' or itchy lips it would NOT be due to a contact reaction.

"I can't drink anymore water." 

We had Coby drink the full cup of water afterwards which is also supposed to help, and he wasn't happy about drinking all that water. But he managed.

And then same ol' same ol' began. Same bleep different day. He lay on the couch for the first hour with me watching him. 

...and the first 15-20 minutes I allowed myself to hope... but then it began. Again. 

20 minutes in- one rub of the nose and one scratch of the knee.

'okay... maybe it'll stop there' I allowed myself to hope.

25 minutes in- four wipes of the mouth

28 minutes in- a little bit itching of his skin

40 minutes in- his right eye began itching and he rubbed it four times

itchy eye

one of his many lip 'swipes'

 50 minutes in- "my nose feels stuffy" and 3 nose swipes

And by the time the full hour is over- he had wiped at his lips claiming either "they are so wet" or "they are itchy" 49 times. (he also began chewing on his lips to help relieve the itch at times)

(On day one at the doctor's office every 15 minutes they gave Coby another dose. THOUGH because he was so sensitive unlike most people- instead of 'updosing' every 15 minutes, they gave him the same dose as before 15 minutes later--- meaning each updose only happened 30 minutes in...

Other children are known to start having symptoms 5 minutes after the dose... Coby never does- his starts anywhere from 20 minutes to almost a full hour in. So I am now wondering if it's possible that Coby has delayed responses- so when the doctor thought it was okay enough to proceed on day one- his body was still going to have a negative response to several doses earlier.... ???? This is so confusing! But if my hypothesis is correct that would mean his original take home dose should have been several doses earlier)

Some of these symptoms such as the swiping of the lips continues into the second hour but I'm not taking such detailed notes anymore...

So it seems as if our experiment has failed.

So tomorrow we are calling the doctor. Again. To let him know this dose hasn't been working either. And Yitz will be bringing the cooler into his office so he can pick up the next downdose mixture from the doctor's office on his way home from work tomorrow.

I just hope something clicks and soon. I hope if the doctor does agree we need to downdose- that Coby quickly acclimates to THAT dose (which would be 1/25,000 of a peanut--- FOUR TIMES SMALLER THAN HIS TAKE HOME DOSE) so we can start finally climbing UP The ladder instead of constantly going down. The road ahead looks endless- but please G-d let it work....

.

Teeny tiny update

I have no pictures or cool quotes or anything inspirational to say- just using this to update what is going on with Coby.

We called his doctor today and the doctor told us it is actually still possible that his rash that remains is still related to the strep and/or the antibiotics (that he now finished over four days ago).

He also said that we are giving Coby his zyrtec at a stupid stupid time. (he used kinder words than that- I'm paraphrasing ;). True zyrtec is 'supposed' to last 24 hours but sometimes its effects are gone in as little as 18 hours. AND it can take up to 2 hours for zyrtec to completely be in one's system. So by giving Coby his zyrtec 45 minutes before dosing---- chances are we are not protecting him from his environmental allergies with that.

As I type this I smell our freshly mowed lawn and blech- I hate that smell and it's making my own allergies act up. HACHOO!

Well what do you know, I did manage to sneak in a picture--- and a Disney one at that! ;)

And perhaps Coby's start of a cold is actually the environmental allergies kicking in. Someone else's doctor said with all the rain that came on Tuesday it brought out lots of allergy triggers....

SO.... beginning tomorrow we are going to switch Coby's zyrtec time to morning before school. So FOR SURE eight hours later it's good and in him. He does not want Coby having no zyrtec in him today though so he told us to half dose him today (because we wouldn't be able to fully dose zyrtec now and then again in 16 hours.)

He wants us to give it through the weekend with the zyrtec being moved to the morning hour (as long as it doesn't make him tired) and more time after finishing his antibiotic.

If Coby is still having symptoms after dosing Sunday night- we are going to call the dr. Monday and we will down-dose Coby again.

We are on the tiniest dose of 1ml possible with the solution left at home- so they would have to mix up a new solution at the office & Yitz will have to stop by there on the way home on Monday and pick up the solution (and cooler and ice pack) to be brought back to us.

So hoping that moving the zyrtec to the morning sets something good into motion and we wouldn't have to down-dose any more.

We are supposed to be at the doctor right at this very moment UPDOSING (for the 2nd time)- but alas (who says that... 'alas'- insert eye roll) we are not.

BUT at least we have a plan for the next few days. Even if it's not necessarily the plan you want- being handed some type of road-map even short sighted as it is, helps relieve some of the pressure.

Movement of zyrtec time, more time between ending antibiotics and please G-d let this work. Otherwise next down-dose level being picked up on Monday and we will take it from there.

just an update

I don't have anything new to really say- just some more confusion. As luck would have it, it now seems that Coby is catching a cold. His nose is stuffy and he's snoring as he sleeps. There's a whole 'machloket' about whether you can dose during a cold or if you have to down-dose some more.

We actually were planning on calling our doctor tomorrow anyway because we already were thinking that he needs to be downdosed some more. We decided to give it one more go this evening and try to do everything 100% right.

I actually noticed BEFORE dosing today, that Coby scratched at his body a couple of times and was swiping at his nose too- and this was BEFORE the dose! (Of course by night time now I recognize the nose swipe as a developing cold.)

I know that doesn't really explain why he was scratching at his skin before dosing other than maybe it being still related to the rash or eczema.

Coby has had bouts of eczema ever since he was a tiny baby (which was our first hint to the allergy) and it is never 100% clear anyway. (But it's always tucked away behind his knees or on his upper arms so it's never evident in any pictures and he always looks like his cute little happy self!)

This evening Yitz also made sure to cover him in cerave after his bath (which was timed to be three hours after his dose as it needs to be) to try to get his skin under control. His rash mostly faded though there are still many dots all over. Since our allergist said he believes it is more due to the antibiotic Coby was on for strep than the peanuts we called our pediatrician to mark Coby's file that he shouldn't be given this antibiotic again.

So Cobes came home from school and "zyrtecked" right away. Unlike other times when I would only give him a carb or a banana 15 minutes later- I had him eat whatever he wanted right after having his zyrtec. He had a yogurt. He had a plate of noodle salad. He had an entire piece of challah. 

When I dosed him- I then proceeded to clean his face and lips with water and we made sure they were completely dry. (I was told a 'contact' reaction of itchiness at the spot the solution touched- like lips and throat is normal and should go away in minutes but I wanted to try to keep that from happening at least on his lips.)

He drank a huge cup of water after dosing (instead of just a bit) and ate an entire cup of applesauce and a piece of apple.

I had it covered. But sure enough same ol' same ol'. Several swipes of his mouth because "it feels wet!" (which he NEVER does other than in the 90 minutes after dosing). And scratching at his arms and belly and legs and back. And lots of nose swiping.

As usual not once does he complain- it's just what I noticed from observing him. Again.

So we had planned on calling the doctor about possibly down dosing even more. (sigh) And this was before we recognized Coby had a cold coming in. (I hope- it's just a cold and not a delayed reaction) When he went to bed he sounded so stuffed and when I checked on him he was snoring.

I know 'tis the season of colds. But colds complicate OIT. ARGH. I feel all lost without a road-map (not that I know how to read a map anyway ;). 

So here we are 16 days in. Already dealt with high fever and strep with a 3 day downdose. Already missed two updose opportunities (if all had gone well). On day 2 of another downdose. Now developing a cold and calling about downdosing even more.

I'm reading about people who graduated and who are so much further down the road than I am and it gives me hope. They help light the way. Though all those questions about the future remain. Someone sailed through the liquid stage (which Coby is on now) all the way to 100mg. (To put it in perspective- Coby is currently still having symptoms to his dose of .025mg (SO ABOVE MENTIONED 100MG IS 4,000 TIMES WHAT COBY IS ON NOW) and just entered the 'peanut flour' stage. The doctor gave her the same amount (100mg) but in flour form and the child had a horrible reaction. And I am reading how it's actually quite common to react when the form is switched- even if it's the same amount of peanut. That is terrifying.

Yet that is 4,000 times away from where Coby is now.... and if we are downdosing some more then that would be over 8,000 times away.

So anyway, yeah. Downdosed yesterday to 1/12,000 but same ol' same ol'. And now he's developing a cold which complicates things even further. Hope the doctor can give us some more guidance come tomorrow.

F you peanut!

spinning

So it's gonna be one of those 'two blog posts a day' kind of days. I am soooooooooo confused, my head feels like it's spinning.

We downdosed Coby today to half of what he was one.... AND HE HAD THE VERY SAME REACTIONS as yesterday! The thing is he does NOT tell me anything and so I have to watch him like a hawk. If I weren't watching him like a hawk for 90 minutes after each dose I would think, 'oh he is fine- he isn't complaining at all.'

Yet I watch. And for a half hour all seemed okay. And then the 'mouth swipe' began. And continued, again and again and again.

Why?

"My mouth feels wet." It didn't look wet- but it feels wet- maybe he felt tingles and it felt wet? I don't know. He said he doesn't know what tingles mean. Today he admitted that his mouth felt a little itchy too. (THIS can be normal- the same as when someone gets an allergy shot- the site of the shot can get itchy- so the place the peanut solution touched- lips or throat can get a bit itchy.)

45 minutes in to it, an itch of the knee. Then his armpit. Then the other one. Then his belly. An hour & a half into it (which should be outside the bulk of reactions)- his nose started getting swiped. WHY I ask him. "It feels stuffy now."

Why the heck are we having the same reactions as every other time?

We sent a picture of what his rash looks like now to our allergist and he said, "it looks like an antibiotic reaction more than a peanut one." (Though the big one from last Monday may have been a peanut one.)

I post on my OIT group and they tell me if Coby continues like this one more day we need to down dose even more.

That we are supposed to be 'sneaking' the peanut into his body without it recognizing it. Of course AT TIMES there can be a reaction- even an epipen needed one- but there should not be daily reactions. It should be sooooo tiny that the body barely registers it.... and then you get to updose- and maybe a day or two of some adjustments, but then that is it. WE DOWNDOSED--- yet his body reacted the very same way.

And then they start discussing dosing times- of dinner time vs. earlier and I start explaining updose times at the doctor's (if we ever get there) are 4:15 and it's supposed to be a 24 hour give or take an hour or so window difference- so I cannot dose at 7PM and then updose 21 hours later and then the following day 27 hours later.... and how I'd be scared to dose so close to bed time- just in case....

And they ask me if it's possible to get more food into him before dosing? My kid is soooo picky and such a tiny eater- I am already practically force feeding him his half bagel or banana or bowl of noodles before dosing followed by a bowl of applesauce. I am literally feeding it to him as he is begging me to stop, "I am sooooo full," and I am worried about giving him a stomach ache. Yet on the boards they are telling me, 'maybe he isn't eating enough with it.'

AND if this is going to work- how long am I supposed to be 'dosing' him with all that food? His entire life? Will he have to have this regimen every single day at maintenance dosing time?

And they are suggesting that even though it 'says' zyrtec stays in the system for 24 hours, sometimes it is out of the system at 18 hours- and how I should give him zyrtec at least an hour before dosing. I had been giving it to him 45 minutes before dosing- at 3:45- as soon as he got home from school.... I didn't want to dose him at 4:45---- because I need to be carpooling at 5:25/30 and I really wanted the major observation hour done before I was stuck in the car for nearly an hour with him. THE MATH JUST DOES NOT WORK!!!!

And then there's the whole microgram vs. milligram debate. They said don't go past 3mg on day one. Which is 3 milligrams (our doctor's goal was to get to 5 milligrams which is equivalent to 1/50th of a peanut). Now they are saying they MEANT micrograms. I told them microgams is NOT mg, but rather μg. And then they said they were confused- and I told them Coby is now only on 25micrograms- but to convert that to milligrams- he is only at .025mg. A milligram is 1,000 times as much as a microgram.

And my head feels like it is spinning.

And I am so confused. Do we really have to downdose? AGAIN? How much further down can we go? Maybe on day 1 when I noticed that very first mark appear underneath his chin-THAT should have been when we stopped (though I think that was only like 3 doses in to the day) Maybe we should have stopped at the 1/1,000,000 dose- we may have gotten ahead faster than it seems like we will this way. 

And people keep saying, 'go slow, go slow.' I am trying. I am going backwards. I don't understand this. Part of me really wishes we started at the very first dose as our take home dose because then there'd only be one way to climb- and that is up. Now I am full of question marks. Some doctors dose twice a day- others do once a day. We are doing once a day. If all goes well we can go in for updoses every week. (We are not going in for another 2.5 weeks AT LEAST)- others say to ONLY go in every other week at most.

And they are telling me to hang in there- that the beginning is the hardest and it gets easier- but augh!!! this is soooo hard!

Coby questioned me when he saw me only fill up to the "1ML" mark today. I had planned on telling him afterwards to see what would happen without him knowing we were down-dosing, but the kid is too smart for that. I explained to him how it's good we are downdosing, so hopefully his body will accept it better and we'll be able to proceed without his body hurting and get to that graduation point. He seemed 'okay' with that.

Earlier in the afternoon when I gave him his Tuesday Nutella dose (which he has to eat weekly after passing his food challenge) ,he was fighting it begging not to have to eat it. (I know, I know- who doesn't love nutella? Refer back to my saying how I have an extremely picky eater) I had said, "Sometimes we have to go through icky things to get to the really good things."

A few minutes later I was making dough for home-made pizza night and I was complaining about the stickiness and ickiness and how it's so annoying to make dough and my little smarty pants threw my own words back at me. "Mom, just picture the delicious pizza we will get out of it. As you said, 'sometimes we have to go through the icky things to get to the really good things."

When I began to laugh, he responded, "Hey, you live and you learn!" Yes ladies and gentlemen, I've been served by my 8 year old.

Inhale. Exhale.

I just wish it weren't this hard so soon after leaving the gate.

No, I WON'T give up.... but my head hurts :(