HAPPY UPDOSE DAY!!!! That makes three in a row!!!!

Another Thursday and we did it yet again!!!! That makes it three Thursdays in a row! And honestly it was a crap-shoot---- I wasn't 100% confident that we'd be able to updose.

Coby still cannot kick his cold and he even had a low grade temperature earlier in the week.

I learned that during OIT the body is using so much of its energy fighting its 'enemy' so it is difficult for it to fight other things as well. They are more susceptible to get sick and to have those lingering colds. (And then that sickness/lingering colds can make a reaction more likely because the body is fighting off too many things and at times something gives---- it's a vicious cycle.)

A few days ago Coby went to bed in his heavy flannel pjs and socks wrapped in a blanket and his room was pretty warm. When he woke up his legs felt warm and I thought, 'oh crap!' Thermometer showed 100.3 and he insisted, "I am perfectly fine mom!" I was wondering if maybe he got overheated during the night wrapped up in all those layers. He was acting perfectly fine (other than his cold) but still I was already figuring, 'great he's going to get sick, his temperature is going to climb and we will all miss several days of work and school... dr will make him downdose and then no way are we making it in this Thursday... Yep, my mind was circling that drain.

That afternoon (with no meds in him) his 'temp' was 99.1 meaning we didn't even have to call the doctor about dosing! We already know that anything under 100 is okay(ish) to dose (just watch extra carefully)!
And that was it as far as his 'fever' was concerned!!!!
Nothing else!
It had completely disappeared! How lucky were we!!!! Dodged a bullet there!

But of course--- he still had that cold. Mostly in his nose. A couple of coughs after dosing one evening. A random cough another day. His nose was the biggest culprit and we ended up doubling his flonaze (as per dr instructions) last night to help him breathe.

We weren't 100% confident we'd be able to go in today to updose since many doctors do not updose a child with a cold while others do as long as the lungs are clear and there is no fever. Coby went to bed hopeful that he'd be able to updose today.

I went to bed and was unable to sleep. Apparently insomnia has become my Wednesday night tradition (which I hope I can break)- me being a ball of anxiety worrying about everything under the sun. Will they tell us to come in? Will we go in only to be sent home? Can he updose? If he does, will he react? How the heck am I going to get there on time now that his school started dismissing ten minutes later than they used to and as it was I was only making it in at exactly our appointment time. What if I never fall asleep? How will I drive safely? Will I get lost again? What if the weather is bad? Tick tock tick tock tick tock through the night.

But a few hours of sleep and a whole load of caffeine and I was ready to face the day--- well sorta.

A random unpredicted snowstorm?!!!! And it's sticking?! Are you friggin' kidding me?! No way am I going to drive up there in this weather! ARGH!!!! G-d has a sick sense of humor. Fortunately it was a quick passing storm and I felt my blood pressure resume to its normal level.

The doctor told us to yes come on in today and they will assess Coby.

But by this afternoon as I awaited Coby's carpool arrival I was nearly having a full blown panic attack knowing there was no way in hell we'd get to Suffern in time and the doctor already had given us the latest possible appointment time as it is.
I did many laps around and around my first floor as I waited for him.
When he got home I'm sure we were quite the sight- him running in and ripping off his coat and boots to run to the bathroom and pee- me pulling off his uniform and pulling his other shirt on over his head. He washing his hands as I'm tugging up his jeans. Throwing on our coat and boots and grabbing all our gear and running to the car. Him speed eating through a bagel as I'm begging Waze and my phone battery not to crap out on me! You see, being late is one of my biggest hang ups. It makes me crazy. I am always rushing everyone out of the house- getting to a show or movie a half hour early. The possibility of being even a minute late stresses me out to the max. Other than the health and well-being of my children it is probably my biggest stressor.

Yet somehow we arrived just two minutes late! Even though it was still 'late' it was so much better than I thought it would have been. The traffic gods must have been smiling down on us today.

We parked the car and I was about to rush us across the huge lot and through the building and down the steps (because who has time to wait for the elevator) but I had to keep reminding myself and Coby, 'no more exercise- you are about to updose. Let's just walk in regularly. It's okay!'

Haha- that just reminded me of something that happened earlier this week. Yitz asked Coby, 'do you want to dance?' and he said, "Dad- I can't! I'm about to dose!!!" WTG Cobes! When we were discussing getting together with cousins over Chanukah , he was asking for it NOT to be near dosing time, "Because I wanna get WILD with them!" LOL.

Getting checked out pre-dosing and hoping for the green light

Doubling his dose!

So they called him into the room and did all the regular stuff: checking peak flow, pulse, blood oxygen, listening to his lungs, looking in his nose. Nose was stuffy- but lungs were clear. And the verdict was in: "I am 100% comfortable updosing him today as long as you are comfortable with that." (and again lol: Coby just read the last sentence over my shoulder and corrected my grammar and had me delete a word. Too cute!) 
We were soooo excited we were given the green light but since he was so congested I brought along the flonaze and the dr. agreed to give him an extra dose of that before giving him his peanut dose to help clear the path. (If a child is congested before dosing it can be very hard to tell what is from the cold and what could be a reaction from the dose.)

AND HE DID FANTASTIC!!!!!

...and a new week begins! Praying for a boring one! If all goes well---- next week we'll be doubling up once again and actually hit the milligrams stage! (1,000 micrograms equals 1 milligram).

Three more updoses and he will (IY"H) finally be past 'day one'. (Kids who get through the entire day of the original day one go home with a 5 milligram dose. We are now 45 days past that day one with still three more updoses to finish that 'day' up. But hey, we are moving in the right direction. And slow and steady wins the race!!!!

 Oh---- and in case anyone is interested I did NOT get lost a single time today!!!!! Progress ;).

One step at a time

Last night I went to bed feeling disheartened (despite OIT going relatively smoothly as of late). Why? I had read about a reaction a child had despite being in OIT maintenance and with no real understanding of how or why.

Yet this morning when I woke up and logged onto that group there was a new post: "Come on graduates- we know that people tend to post only when there are problems or they leave the board completely. For those of us that are still in this group let's help those still on the journey and post here if OIT has been boring with no incidents/reactions for your child."

And one after the other they came out of the woodwork. Weeks after graduation. Months after graduation. Years after graduation. Zero issues. Life changing. Normalcy. Happiness.

I soooo needed to see that when I did and I feel a bit lighter about it today. I still have a bunch of concerns and questions as we get closer to maintenance (which is still forever away anyway), but I need to remind myself to focus on the here and now; on the one step at a time- because all worthwhile journeys can seem too long or too hard or too big a chasm to cross, but when you do it one step at a time, it is very manageable. You need to block out all the what ifs and all that still needs to be done and just focus on the here and now, or maybe ahead just one next step.

A perfect example of this is my journey to Coby. I NEVER IN A MILLION YEARS thought I'd be able to do invitro and go through all those fertility treatments. It seemed impossible. No way in hell. A mountain way too high to climb. The almost daily 6:30AM appointments and blood tests and sonograms. The twice daily shots at home (some for several months), the horrible side effects, the ups and the downs, the procedures. The losses. The roller-coaster.... BUT when we focused on the 'one step at a time'- instead of all that was yet to come, maybe just maybe...'
- let's just go for that first consult- that is manageable.
-let's just go to the shots class- that's manageable.
-let's just get all the necessary tests done quickly- I got this. (and I had them all done within 10 days despite the doctor telling me that some people take months to get it all done.)
-let's just make that phone call and order the meds
-just tonight- just give me the shot tonight- the first is the hardest- let's see if you can do it without passing out.
-Just today. just one day I have to wake up before dawn for just one sonogram. Just one blood test. I'll be home before Josh & Mikey even leave to school and the rest of the day will be normal again.
-Just one more shot tonight.
-Just one more appointment.
Etc etc etc

And before we knew it it was over. By doing one day, one step at a time- it really wasn't so bad. When broken up into days, into hours and sometimes into minutes it was manageable.

And look what I got out of it.

Because by doing it one step at a time chasms can be crossed. The most worthwhile things in life are the ones that are hardest to come by.

We may be on a tough journey that seems endless and scary but this can literally save his life. It will change his life in more ways we probably can even imagine right now. Hopefully all will be okay like for the thousands it has been so far. And for all those lingering questions--- they can be answered as we get closer to that point.

Until (please G-d) Coby is protected enough it is only education that saves lives. Unfortunately though, even despite training people, accidents can and still happen.... but my Coby-bear managed to use his own education about his allergy  to stop just before eating, read and perhaps saved himself what could have been a bad reaction. And I am beyond proud of him!

So what happened today?

His class was having a siyum with kids bringing in treats for the party. In the past, everything from huge bags of nosh was just dumped into a big ziploc for the kids to eat in school. Random pieces of chips, popcorns and cheese puffs obviously had no label once in that bag so Coby would bring it all home and we would take note of what was in there and buy him similar things in which we can find a safe label.

Today Coby wanted to eat in class just like each of his friends. For all the big bags of things (mentioned above) Coby asked his teacher, 'can you please check the ingredients so I know if it's safe for me.' He told me she only checked what he asked her to and the things he didn't want to eat he didn't see her checking. (WHY IS A TRAINED TEACHER NOT AUTOMATICALLY CHECKING ALL LABELS LIKE SUPPOSED TO- I HAVE NO IDEA...)

Also given out to the kids were individual packs of things. Coby was given a miniature pack of pretzels with no ingredients listed on it. A girl told him, "I think they are safe though." My smart Coby knows 'no label no eat' (we've seen pretzels that may contain peanut butter before & there's no such thing as 'i think it's safe' so we don't take the chance).

He was also given an adorable pack of emoji cookies. His friends were eating them and he was so excited to have his too. He told me, "they looked soooo delicious!" But just before he was going to open his bag something stopped him and he decided to read the ingredients himself.

"Made on equipment shared with peanuts...."

The school's policy is that the kids can't even bring food in if it's made in the same FACILITY as peanuts or tree-nuts, let alone the same equipment. AND at least with a facility it can be in a totally separate section of the warehouse- and not even that is allowed.... but EQUIPMENT?! These cookies were actually made on the very same belt that holds peanuts? And it was given out to all 21 children without anyone checking the label.... until some inner voice told Coby he should check it. Thank G-d!  I am so proud of him for stopping, for checking, for not giving into temptation and for putting the whole thing away. He then proceeded to watch the other children around him eat that which is dangerous for him. "But mommy it looked so good!" (I promised to buy Coby an entire box of rainbow cake which is his favorite--- all for him!!!)

I mean, I know an adult should be expected to take care of themselves that way (but even they would need help at times)- but an 8 year old? It's too much pressure on his shoulders! (Yes an e mail was sent to the school)

Reality is people will screw up: both well meaning people and people who don't give a damn.  And it won't always end well. BUT.... if this type of thing were to happen once he finishes OIT, IT WOULDN'T EVEN MATTER!!! Shared facility, shared equipment, 'may contains'- that would all be FINE!!!! He would be safe. We can't count on anyone to keep him safe. And as smart and as vigilant as Coby is, he won't be able to keep himself safe at all times either. He can't control the particles in the air or the door knob that is touched. I am sooooo proud of my boy.... but what does this teach him? That those who are supposed to help keep him safe don't?! It is always nerve-wracking to send him to school or anywhere for that matter just in case... But for school though my biggest concerns would be 'what if there's a sub who doesn't know?'... But this wasn't a sub!!!! They KNOW his story and were TRAINED and STILL this happens?

Last night I went to bed so scared but today was eye opening with those out of the blue the postings specifically about all the "boring journeys" with no incidents, followed by my false sense of safety for Coby smacking me in the face today.

I am soooo proud of my boy. (I cannot say that enough!!!) And as scared as I am about OIT--- I look forward to every single updose because every fraction of a fraction his little body can learn to tolerate makes this world that much safer for him to live in.

One step at a time...

BUT

I am not sure why I am writing. Nothing substantial happened- thank goodness. So far he is tolerating his latest updose! Which is great- I know.... BUT

Sometimes it's so hard to squelch my fears all the way down and to shut up all the "what ifs". As we inch closer and closer to the 1/100th of a peanut date I feel my fears growing.

Doctors have said in the past that while Coby can react to any amount of his allergen, they were specific about the amount 1/100th. "Something as small as 1/100th of a peanut can close his throat in seconds."

If we are able to go in every week for his updose (if it goes well, and no illnesses) we are just 2 and a half weeks away from that point.

This Thursday would be 1/600th- his last microgram updose (I think.)
Then 1/250th. (a milligram!)
Then 1/100th. That 1/100th that I was told can close his throat....

And it terrifies me.

This whole process terrifies me. The future terrifies me.

Sometimes it feels like I'm just going through the motions; planting on that smile as I push my fears all the way down. You remember being a kid and having a kick-board in the pool and trying to push it to the bottom of the pool and stand on it and inevitably it would come shooting right out of the pool? THAT is my fear. Trying to hold it down deep in that pool and not let it burst up.

BUT

Someone who is already at 6 peanuts had a reaction out of the blue. She had safe frozen yogurt and was sitting in her car watching Christmas lights- and now she's in the hospital fighting an anaphylactic reaction- despite being at the 6 peanut point. Her mom doesn't know why. It was hours after dosing and she wasn't exercising- she was sitting in her car. (being within the first hour of dosing or exercising within 2 hours is highest likelihood of reaction- which she had none of.) I mean, we all know OIT doesn't guarantee 100% safety- after all your child is still allergic. What it does guarantee is a much more normal life and more safety than he otherwise would have.

Most parents try to get OIT done before their child hits the tween years. That is when their child begins to grow up and away from his parent and his parent no longer has control. In a sense it is easier when they are younger and you have more control... but once they begin to make more and more of their own decisions.... friends' bar mitzvahs, hang out at the mall. Going out to eat and not wanting to call attention to himself so he eats and tries to hide it (There actually was a teen who died from an anaphylactic reaction in a mall when she hid in a bathroom stall). College. Room-mates eating who knows what. Airplanes. Vacations. That first kiss. (And yes someone has died from kissing her boyfriend who had eaten peanut butter 3 HOURS earlier.)

THIS is why we do OIT because it is the most we can do to protect our child as we get ready to send him out into the world. He'll be safer. No more worries of touch or airborne reactions- at least THAT part will be settled. Freedom. Peanut dust in the airplane couldn't kill. A kiss could no longer kill.

BUT BUT BUT BUT BUT.
It is so scary.
And I'm so terrified.
But I HAVE to do this. right?
Of course I do.
It's the ONLY thing I can do to keep him as safe as he possibly can be.
BUT BUT BUT BUT BUT.
but i have to try
there are thousands and thousands of success stories who did not (yet??) have reactions in maintenance and during all those years they were free to enjoy their life to the fullest.
This can save his life!
So I HAVE to do this.

BUT

Somedays it gets very hard to silence the fear.

OIT AND FEAR

PREFACE: THIS IS NOT MY POST!!! (BUT WAS GIVEN PERMISSION TO SHARE). THIS IS A LOOOONG POST CLEARLY STATING THE BENEFITS AND THE RISKS. I AM POSTING IT SIMPLY FOR THOSE WHO MAY WANT TO EXPLORE OIT FOR THEIR OWN CHILD OR THOSE WHO ARE INTERESTED IN LEARNING MORE ABOUT IT. THIS HAS NOTHING TO DO SPECIFICALLY WITH COBY'S JOURNEY BUT I AM POSTING IT BECAUSE SOME EXPRESSED INTEREST ANYWAY AND OTHERS MAY BE CONSIDERING OIT FOR THEIR OWN FAMILY. THIS IS A VERY WELL WRITTEN POST. BETTER THAN ANYTHING I COULD HAVE WRITTEN:

OIT & EPI FEAR: It's the #1 fear we hear over and over. Unable to start or explore OIT because "I've seen a lot of posts about having to use the Epi in treatment." So here's a post and a graphic to help you reframe that fear and think about it differently. Because to hold your child back from a treatment with 80-90% success rate because of YOUR FEAR isn't fair to them. It is something you can work on--either through ideas in this post or with a trained professional. Yes, some of you parents should get a therapist to work through your issues with food allergies and in treating them. There is no shame in trying to set yourself free.

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1) PLAYING THE ODDS: OIT WORKS

Imagine having a conversation with your 25 year-old child and explaining you didn't pursue OIT for them because you were afraid. What would their response be? How would their childhood have been different? I couldn't risk that, knowing the very high odds that my daughter's life would be dramatically improved. With OIT we are playing the odds.

Here's the way I think about "trying it" if you've come this far. The studies and practice statistics are remarkably consistent with the 80-95% number. When I looked at my daughter I could not imagine sentencing her to an FA life if she were in the lucky 80%. How would I explain it to her? Sorry, I was too scared to try? If she's in the 5-20% who fail, well, we stop and we have some scary and perhaps unpleasant times but we can stop. I won't regret it.

So your child is already in one camp or the other: the 80% it works for or the 20%. You just don't have any way to know which one. You're just waiting to see the lottery ticket.

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2) STRICT AVOIDANCE AS A TREATMENT IS A FAILURE: ACCEPT IT

Too many people reject OIT as being too dangerous--as if they were evaluating it from a perfectly safe place instead of sitting on a powder keg. Folks, you are driving without a seat belt and airbags and worrying if adding those to the car will cause injuries in a car crash!

The big difference with OIT parents is that we've accepted the failure of "strict avoidance" to protect our kids. And we aren't willing to live a frightened, hyper-alert, always-prepared way of life trying to chase something we have no control over. Peanuts and trace residue are everywhere. People are idiots. Accidents happen and mistakes are made.

If you want to scare yourself, do it with the risks of the choice of "no treatment" Because that is a choice--to accept the current state or risk as an acceptable treatment. Without OIT, The American College of Allergy, Asthma and Immunology (ACAAI) says nearly 15% of patients per year have accidential reactions. Stanford says approximately 25% will have a near-fatal anaphylactic reaction at some point in their lives. So that's your baseline. 200,000 ER visits a year and millions of reactions that never reach a hosptial. Millions. As a friend of mine said, how many photos every week do we need to see in the No Nuts Moms Group of hives, rashes and kids in the ER to accept that strict avoidance has a high failure rate? Saying "no" to OIT means you are choosing this course of "treatment." If you were just starting out, is that what you would choose?

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3) EPI PENS WILL BE NEEDED WITH OR WITHOUT TREATMENT

It's a hard thing any way we look at it. We have allergic kids who are staying allergic. ANA is always gonna be there along with our Epis. With or without any treatment it's there. We have no way of truly comparing our child's risk of ANA on any given day. So choose to accept that both paths have a risk: "Strict Avoidance" has an X% risk, and OIT has a Y% risk. You can make yourself crazy trying to compare X and Y (and many of you do). Better to accept and view the Epipen as a tool to manage it. Better to decide that maybe X=Y since we can't know and not think of the EpiPen as the deciding factor in doing OIT or not.

Some do have to use Epi during OIT. It is a risk, and a reality. If it were closer to zero RISK, OIT would likely be more widespread and done by more doctors. Our docs that do this are the best--they really understand how to minimize the risks. When we see ANA here--and you can see old posts, most of the time the parent can figure out a reason for it--not following "the rules" strictly, or a viral illness etc. But we do see random unexplained incidences.

So yes, again ACCEPT IT that you will see each and every month that a few people have to use Epi. Stop being shocked and amazed and paralyzed by it. Hundreds have left the group and gone happily on to live their lives. When we "see" Epi events we assume everyone is having them. Everyone! The rule of support groups is that we see and hear what the problems are.

No one can estimate a percentage of risk whether your child will have ANA with or without OIT. That's the calculation those of us who proceed did in our heads. For me, even if it was equal--5% or 15% with or without OIT, who knows?--the scale ripped toward OIT because it allows us to live normally and participate fully in life. To get rid of the fear of food, the social exclusion, the emotional stress and worry. We will always pay attention and carry Epi but she gets to have a life and SEE every day when she eats her peanuts that she is safe.

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4) YOUR QUALITY OF LIFE AS A FOOD ALLERGIC FAMILY ISN'T GREAT NOW.

You can argue this one....and if you have a child with no social, emotional or pyschological issues with their FA life, then you don't need OIT. If their teen years won't be faced with many challenges due to the FA's, then you don't need OIT. Leave the group and go live a happy life!

The studies will prove you wrong in how dramatically OIT transforms life not just for the patient but for the whole family, because the quality of life just isn't great with food allergies. Again, those of us who made the choice to do OIT accepted this fact and weren't willing to compromise on it further. We want normal life. 81% of us just want to be safe from cross-contamination and perhaps eat something with peanut in it. We want peace of mind.

You have to decide if the risks concern you since we live with risk of death everyday anyway. You might think you are switching one set of risks for another. Yet by switching these risks we actually have an excellent chance of lifelong freedom. Because the equation is:

Poor quality of life = High daily fear + daily risk of contact / reaction + social exclusion
High quality of life = Low daily fear + daily risk of contact /reaction + social inclusion

When we are able to know we have some tolerance for peanut, the daily fear goes away, pretty much to zero. We therefore can fully participate in life: parties, eating out, traveling, and yes, kissing! The second part of the equation doesn't go to zero, we know we might still have a reaction but the risk goes much lower. This is why OIT is a miracle treatment and the quality of life studies prove it.

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5) YOU WILL STILL HAVE EPI/ANA FEAR BUT IT WILL BE REPLACED WITH JOY FROM NORMAL LIFE

This is the graphic below. On the left, your fear/worry about using the EPi is a huge presence in your life. Your focus is around staying safe and managing it as best you can. There are costs of this way of life--financial, emotional, social, burnout...it's endless. And still the Epi/ANA fear is there. It gets worse as they age--and they will--and spend more time away from you, OR they become socially isolated because they can't go places and do things.

Here's what happens after OIT. PAY ATTENTION!!!!!! ------> You still have the fear. See? It's still there in the diagram on the right. But it SHRINKS. It gets moved out of the way because the rest of your life is filled with good things: social events, shopping is easier, less stress with family, your child can go places and give you a break, you can travel, eat out. I am living this NOW after a 2 year "stint" in the food allergy world, and I can tell you that Epi/ANA fear shrinking just happens over time. I'm still ready, probably MORE ready than before to use Epi if needed, but I feel I would be very calm if it were to happen. Because the rest of my life is moving back into balance. When you become empowered you can deal with a little stress.

The reason we treat is that we want to LIVE LIFE. They get released from the social and emotional burdens. The Food Fear. So while we don't ever get totally free of that little nagging ANA worry, when we see them eat the peanut everyday with no issues there is such a physical and psychological sense of relief it's hard to explain. I didn't expect that but when we got to 1 peanut and I saw her EAT IT it was an unexpected sense of relief.

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6) IF OIT DOESN'T WORK, YOU STOP

We aren't removing parts of their brains, or limbs, or loading them with drugs or chemicals, or x-ray beams....permanent, scary damage....you can simply...stop. If it doesn't work, if anxiety is an issue, if GI symptoms are too much, if there's any pain or problems...you can stop. That day. Just stop. No weaning or complications, just stop. The doctors say they just return to normal. You could decide your own min/max if you want: "3 pukes and you're out!" or whatever line you wish to draw.

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7) OIT HELPS YOU VIEW THE EPI AS A TOOL
I am always amazed at how OIT refines skills at giving the Epi without hesitation and the miracle of the drug. I know it freaks everyone out but I now have an opposite feeling. I feel calm and prepared should she suddenly have one of these bizarre episodes. Where I felt helpless before OIT, the "halo effect" of the joy of eating CC and returning to normal life has made the fear of a possible EPI event a tiny little compartment in my brain.

If you've been paralyzed by seeing Epi events happen in the OIT group-- I urge you to go back and look closely at the old posts. What happens? Did they have a theory as to the cause of the ANA? Usually they do. In every case, do the parents handle it calmly and carefully? Isn't it different than the other food allergy group posts you read, full of panic, and often guilt? Most importantly, did the family quit OIT? Why or why not?

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OLD COMMENT FROM LISEETSA:
"And the results, while we consider it a miracle, it's science and biology. Retraining the body to accept something that previously viewed it as danger.

We can turn any conversation into another topic based on fear, which we all have, and we can find an "excuse" or real reason not to do anything. But you don't want to be stuck in an intersection afraid to go either way.

First, would be to make a checklist of reasonable fears-- "PAIN" being the most actual thing that we've seen related to OIT. So then search it and see what others have said about it. And understand, no one wants to create pain in their child-- we are trying to prevent it from happening ever again if possible. Trust me-- you would DO ALMOST ANYTHING WITHIN REASON to make sure that never happened again.

There will always be a voice in your head saying, "That's great but what if..." when you read celebratory stories. And anyone of us could be the tiny percentage that cannot be helped at this point-- but I'd rather TRY then never know and having something worse happen.

Have faith that if you are HERE in this group, we share the same fears and act upon them differently. To adopt new thinking and new habits takes more for some than others. My grandmother told me decades ago, "In a family this big, if you are going to let everthing anyone says to you ruin your day, you are in for a world of hurt." And I was-- because they were genuinely mean, controlling people. No one is forcing anyone here to do anything. We are sharing our FREEDOM stories and answering as many questions for you as we can. No one is getting paid. Everyone is dedicating their time to helping so everyone can be in a better place."

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QUOTES FROM PARENTS

"That's what I think of is the future..when I lose control of every situation my son is in. He is going in 5th grade and I have gotten a taste this summer. .going to movies with friends and their families, going to water parks with out me, more sleepovers. So far I know the families very good and they all are okay with his food allergies, but it may not be this way forever. He is going to want to go more and more places without me."

"I am helpless doing nothing, so it's time to take control and protect my little boy!"

"Avoidance has not been enough to keep my kids safe from an anaphylactic reaction. We have experienced contact reactions at gymnastics, airborne reactions at the little league field and cross contamination reactions on vacation and at a restaurant. For us, OIT is the only choice."

"Eleven years running and next to no reactions. I can handle my dd's allergies fine. Until. Until the airborne reaction to a bag of peanuts in a conference-sized room. (Whaaat?!?) Until we want to get on a plane without having a nervous breakdown. Until she wants to go away to college. Until her 1st kiss. That airborne reaction a few months ago made me realize, by *not* choosing a treatment I made a choice. I say this without judgement of anyone's choice (or non-choice) of treatment. I say it because I never realized my *non-choice* had consequences....worsening allergies and new allergies (tn)."

"...My daughter like your son has lived a very "normal " life. She's had a few hives or tummy issues but that's it. We have been able to keep her in a mini bubble but she's growing up. I want her to kiss freely (maybe:), travel far, try new adventures all things that are limited because of her food allergies. We are doing OIT for her future so she can dream bigger and live freely."

"....I felt just like you! My son is 14 and although his two Ana reactions were at 4yrs old we have avoided peanuts and tree nuts and he lived a pretty normal life besides the avoidances. BUT when he turned 13 I started to get so much anxiety bc of him always wanting to hang out with friends, weekends away, sleepovers and of course GIRLS! It's sooooo different as the get older and they have to start making their own choices without you being there to keep them straight. He just graduated OIT and my anxiety for his future has greatly decreased. Like most parents I worry about long term side affects but I finally came to the conclusion that for us the pros outweighed the cons. I wanted to finish before he started high school in Sept. He still doesn't like peanuts but he has already felt the freedoms that come along with eating them daily so he pushes through. I worry no matter what but it's definitely a different kind of worry. On a side note he did have one Ana reaction when he got to 4 peanuts. We think seasonal allergies played a part but other than that fairly smooth. I'm almost thankful for the reaction bc he knows exactly how it feels now and would react quickly. He doesn't remember his reactions from 10 years ago. He also was very afraid of having to be given the epi but after he received it he actually laughed and said that was it? So I know of he needed to self administer he could do it now. All in all OIT was a good experience and we received the outcome that we were hoping for."

"While it took YEARS to go from determining we would find a treatment for our daughter to beginning a clinical trial, the moment we truly understood that keeping her safe went beyond controlling what she put in her mouth (and acknowledging that it is IMPOSSIBLE to completely control particles in the air and trace residue left behind). For those who aren't sure what to do, I honestly believe there will be a moment or series of moments that lead to clarity about what is best for your child, and your family. While Susan's journey has been astronomically more difficult than we ever could have imagined, she IS safer now than she was (she tolerates her peanut dose far more days than not and in the case of anaphylaxis, she knows what to do). We want something more, but for now, this is success."

"I never had to Epi my daughter until OIT, but you know what? I was so tired of waiting for THAT reaction to happen to her. We'd had close calls (benadryl. steroids, inhalers) but never Epi (and we didn't stop her from eating CC or made in a factory, we never stopped travelling around the world and eating in different restaurants). THAT day was going to happen (and almost did right before OIT started - someone almost gave my daughter a granola bar with peanuts) and I knew that it could be really, really bad. OIT puts me (and her and Dr B) in control. I have confidence that even through the rough patches, OIT works. I'd do it again in a heartbeat."

"...we have learned a LOT during our long journey so far with OIT. One is that my daughter has absolutely NO desire to continue a life where she lives in fear daily of nuts. And she is willing to go to the end of the earth and back to overcome that. Because she knows it is a small journey for a huge reward. And she is tired of a life filled with avoidance and fear. Second, the experiences we have had have been educational and empowering to her. It haven't been easy, I won't lie. But, she had anaphylaxis recently and this is what happened. She came to me and said, "Mom, I'm having a reaction." She had absolutely no signs of any kind of a reaction. FIVE minutes later, it hit. Full blown. And neither of us was stressed, fearful or concerned. We just gave her meds and took care of her. I see this as a HUGE win. She can now tell immediately, before there are outward symptoms, that she is having a problem. She knows how to take care of it and treat it before it is bad. We ALWAYS have her meds, and we are not nearly as fearful as before. We are SOO much better prepared to handle things now. And, I am confident, that we won't NEED that skill her whole life. Just for a short time."

EMPOWERED

...so things stress me out. Shocker, I know. Even every day little things. I hate being late. If I'm worried I will be late- boom, stress.
I do not like driving if I have a choice. On top of that, I do not like driving on highways if I have a choice.  On top of that, I do not like driving to unfamiliar places because I fear getting lost. On top of that, I do not like driving in the dark.

So what is a typical updose day like? Besides the 'regular' stress of, 'what if he can't tolerate this dose?' Coby gets dropped off at 3:45sh and the ONLY WAY we will make it to our 4:15 appointment on time is if there is ZERO traffic. He runs in, pees, changes- we grab out stuff and go. My heart is pounding already worried I will be late.
AND since Yitz can't usually work from home on Thursdays especially since many Fridays of early shabbos he works from home--- so guess guess who's the one who has to do the drive...
...on highways...
...to a place I'm unfamiliar with
...and it's dark (on the way home)

strike one, strike two, strike three, strike four, strike five and strike six. I'M STRESSED! The other day Coby was working on his 'worry workbook' and.... well a picture speaks louder than words so:

That's 37 times for those of you counting...

....BUT I did it- YAY me. We got to the doctor at 4:15 on the dot! I didn't get lost a single time while going. Managed the drive on unfamiliar highways in unfamiliar towns. Managed to drive home in the dark on unfamiliar highways and unfamiliar towns (though I did get lost. Twice.) (And I'm not above admitting that I was yelling at WAZE blaming her for getting me lost with Coby commenting, "Mom, you know she's not real, right?") BUT I DID IT! And I feel empowered. Maybe I can actually do this (unless of course it decides to snow or rain- because that's a whole other ball game.) Yay me!

Oh, but I digress. This is about our little warrior on his second updose day. We actually did hit a tiny snafu before even beginning but thank goodness it was just that. A snafu. They took his vitals before starting and the nurse says, 'he has a low grade fever of 99.8.' "WHAT?! He is fine! He came straight from school, he wasn't complaining about anything!" (pushing aside that when he had 104 a few weeks back he never complained or said anything either.)
She takes it again, "Okay. It's down to 99.2."
"WHAT?! Does that mean he can't updose today?"
"I don't know. We have to talk to the doctor."

Just my luck. Smooth(ish) week. On time. Didn't get lost... only to be sent home?! (Since even dosing with a fever of over 100 is dangerous- there is no chance they would updose if he has a slight fever or a cold.) But.... Thank goodness for faulty thermometers!

The PA told us that this temporal thermometer is actually known to be faulty so she took his temp orally.... and it was---- 98.2. YAY!!!! She said earlier today that thermometer showed fever on another child but it was also just a mistake. HAHA the temporal thermometer is temperamental. Cracking myself up with stupid puns now that the stress of today is basically over.

They took his vitals- everything looked great and sounded clear and she declared us good to go!!!!

BRING IT! I AM READY TO UPDOSE!

She told us while we would be going up 150%  we'd be going down in 'koolaid' from 4ML to 1ML- meaning the peanut protein concentration has just been upped 900%! Here we go....

And then we wait and watch. If nothing out of the ordinary occurs a nurse checks him out and tests his blood oxygen level, pulse and lung capacity every 20 minutes. If anything out of the ordinary occurs they do a bit more.

A couple of minutes after dosing Coby coughed. TWICE. This never happened at home.

"Did you swallow wrong?"

"No."

A few minutes later Coby sneezed. TWICE. My heart began pounding a little bit because this never happens at home.

Could it be a fluke- of course. But two coughs and two sneezes minutes after updosing was a bit nerve-wracking.

The doctor came in and listened to him breathe and said he's okay.

PHEEEW.

Of course he had several of those lip swipes he always has. He also was scratching quite a bit at his ear which doesn't usually happen at home, so again the doctor came in to make sure he was okay.

His regular scratching at his body happened a little bit too, but while we can't dismiss it completely I know he did this after our placebo test too.

And so the hour passes. I commend Coby about how awesome he's doing and tell him, "Do you know that from your very first dose five and a half weeks ago, the dose you just took is ONE THOUSAND TIMES as high as that very first one. His reaction? Again, I'll let a picture speak.

The hour finishes with the three 'twenty minute' checks from the nurses followed by a doctor check (not including the two additional ones the doctor did during the hour), and we are good to go!

Upon leaving Coby tells me (as he did last time) how he misses the PA's 'brother'. Apparently he thought and still thinks despite us telling him it's not the case that Dr. Selter is Jenna (PA)'s brother. She cracked up when he said it the first time saying, "I need to share this with him!"

We collected our take home dose and she told us that as long as no colds/illnesses occur she predicts that this week will be just as 'boring' as last week. From your mouth to G-d's ears! And she said, "And we'll see you next week!"

Time will tell.... But here's hoping!

I JUST UPDOSED TO 250 MICROGRAMS! (1/1,200th of a peanut)

nagging thoughts before our second updose

I cannot believe it's been an entire week since blogging! And I cannot believe that we are hitting another updose day just a week after our last one! Today they will be upping Coby's dose 150%!!! It is so exciting but so terrifying too. This week has been fairly uneventful. That's not to say Coby didn't show any symptoms after his dosing- but they were the same ones he showed with the placebo dose a couple of weeks back- lots of lip swiping, occasional itching etc. In my OIT group they put out pictures saying "OIT is BORING". Never did I think I would be able to relate to that picture but last week I could! It's still a time commitment and stressful and requires two hours of observation and stillness but compared to the weeks before--- BORING!!!

After today Coby would have increased his dosage 1,000 times from his very first dose 5 or so weeks ago. I am so thrilled this week went by without a hitch but I know not to get cocky- I read about reactions being able to happen at any time especially as you get further down the road. I still have that nagging inner voice asking, 'are you doing the right thing here Stacey?' I am not 100% confident in this, after all it is NOT a cure. I read about kids in maintenance having reactions years out of OIT yet those parents STILL praise OIT because their their child is now able to have a normal life and if a reaction were to occur they know how to handle it.

I am going to paste the words of how an expert explains it: People seem to think that OIT is some sort of "Golden Ticket" that guarantees an Epi-free life. It's not. (It would be nice, but it isn't). I see so many parents who can't get past that idea. I find it strange, because you have an allergic child. Anaphylaxis is a risk now, and always will be (unless we find a way to measure true tolerance). 

With or without OIT, your chance of an ANAPHYLACTIC event is between 0% and 100%. All the parents of dead children feared it, but did not know their risk. It is unknowable, and you can drive yourself insane with "what if."

Why then, why do we do OIT? For quality of life, and for protection against accidents that have killed and traumatized so many through anaphylaxis.

This is why we OIT: "People with no interest, education, or awareness can't hurt my child anymore.
Nor can accidental oversight, poor labeling or kitchen errors. No more exclusion, hurt feelings, family tension or food fear."

Someone else wrote how this was the first Thanksgiving they didn't 'dumpster dive' through the garbage can of a family member to pull out a label of what her child will be eating. Another wrote they pick up Chinese whenever they want. Another said their child was able to eat whatever he wanted on their vacation.

THAT SOUNDS AMAZING!!!!!

BUT on the flip side, there's the child who waited the two hours after dosing  and went to his baseball game and had an anaphylactic reaction despite waiting the two necessary hours. So people speculate as to why that happened-'is your child coming down with something because if the body is fighting illness or a cold they are more susceptible to reactions' which makes me think: one's child can always be fighting a cold or illness especially in the winter months- so does that mean a reaction is MORE likely no matter what? They also ask 'are their environmental allergies acting up- because that together with dosing and exercise can bring it out.' which makes me think: how will I ever be able to get Coby off the medicines he is now taking for his environmental allergies (that are not good long term) considering he will have to dose. EVERY. SINGLE. DAY. For the rest of forever. Will there ever be a time where I can completely exhale? How do you know just what to do?

OIT is not a cure. It's a desensitization- that works--- most of the time.

And so I doubt myself saying, 'why are we doing all this? We can just keep reading labels and avoid peanut. After all with strict avoidance we avoided another life-threatening reaction for quite a few years now!' Then I realize- avoidance works-- until it doesn't. Inevitably a mistake will happen. A label will be mismarked. Something will end up cross contaminated. Avoidance is not a cure. And what happens as Coby gets older and is out with friends and taking those risks teenagers do---- avoidance will not work! And so we need to do more than 'just avoid'.

Even children who only had a 'mild allergy' have died. Because it's minor--- until it isn't... There is no such thing as a minor food allergy!!!  You never know what type of reaction will come next. After all now when I look back at baby pictures and I see pictures of Coby with a swelled lip (before we knew he had an allergy my main source of protein was peanut butter since I'm a vegetarian so some of that travels through the milk to the nursing baby) but that was it, or he had an itchy rash, but that was it. So wouldn't that mean he also had a 'mild allergy'- until he didn't? And nearly died. We know how lucky we are to still have him in our lives.

-There are children that took one wrong bite- and died.

If my child were to take one wrong bite after OIT, it would no longer have the power to kill him as it does now. Obviously though, since he will still be 'allergic'- he will still carry an epipen with him.

-There are other parents who don't know how to handle a food allergy reaction and delay giving the epipen, or think benadryl can take care of it---- but it doesn't.

(If any of you readers have someone in your family with an allergy- a very well written article came out yesterday regarding the use of benadryl and the use of epipens- I strongly recommend it: 

https://chewthefatt.com/2016/12/07/putting-the-fire-out-by-dr-brian-schroer/ )

This is one tough journey though and I am only just beginning. At times I doubt myself big time--- shlepping out upwards of thirty times dedicating at least three hours to each of those trips, dosing my child every day and dedicating the next two hours to staying stillish and observing--- is it worth it? The morning medicines and afternoon carb loading--- is it worth it? Then I think about the parents who lost a child; there are no do-overs so how can I not do everything in my power to save his life? I HAVE TO DO THIS!

But it's very hard to quiet down all those nagging "WHAT IF"s? What if after graduating (please G-d) Coby eats something from an ice cream truck- which he will be able to do!!! but then goes RUNNING off to play with his friends? Will that (running) bring on a reaction? I learned that in the future if he eats something that 'may contain' or something 'cross contaminated' he will not require a rest period- but will still need that rest period anytime he doses or eats something with actual peanuts- for at least several years (and possibly indefinitely) after graduating. So if he were to eat a snickers bar- boom rest period of two hours. Peanut butter & jelly sandwich- boom rest period of two hours. When he doses his 24 peanuts (I think) each night- boom rest period of two hours. How do I do this? How does he do this?

There are those who are doing OIT and are just fine. They know how uncertain the beginning is and all the 'what ifs' that haunt us and they assure us it will get better. They stood in our shoes and know how scary this is and constantly remind us how worth it this is. Even regarding the two hour rest period: there are those  who are several years out of OIT, whose IgE numbers decrease to such a small amount they no longer require a rest period!!!!  So who knows?!
Exactly- who knows? Sigh. Iit feels like a 'crap shoot'. Every body is so different and unique. So who knows? I find it so hard to believe that there will ever be a time where I can ever truly (and almost) completely exhale. Yet those who were there before me assure me the time will come--- they doubted it too, but their life is so much better now.

Their child is now protected. 

Their child is now included. 

The world is now open to them.

EVEN those who require an epipen every now and then after OIT, assure me that OIT is the best thing they ever did for their child.

And they remind us newbies that for every scary story we read about OIT there are thousands of others who are doing just fine. THE ODDS ARE IN OUR FAVOR!

Parents further down this road than I am claim that while you can't ever fully exhale but the weight that is on your shoulders will lighten by over 90%. Right now Coby can have a reaction at any moment at any time- that will greatly decrease at the end of this, and he will have his childhood back. What greater gift is there?

In fact Coby has a siyum in school this Monday. He NEVER eats at the siyums. I know the school is nut free, but each child brings in something from home and that makes me nervous. I'm a morah- I've seen parents mess up and send in things to school that are not nut free ranging from M&Ms- to actual bambas!!!! What if Coby's teacher is overwhelmed at reading 21 labels at once and misses something? I told Coby, 'if you don't see the label, you don't eat it.' So while the kids eat whatever they want during the siyum, Coby brings all of his home in a big ziploc bag. Anything with a label we rinse off and let him have. All the free standing food (cheese puffs, popcorn, pretzels)--- we dump and replace with a safe alternative. After graduating OIT Coby would be able to eat at the siyum with no worries. 

Less than one hour before we are on our road to his appointment....

When I found out we are good to go with today's updose I felt soooo excited and thought I was okay with it--- but insomnia struck again last night, and those wheels in my brain are in constant motion as I sometimes feel like a blind person walking through a very wide tunnel where I cannot even reach the walls to help guide me through.

So I need to pull out my supply of blind faith and trust in the thousands that came before me and just keep moving forward.

Coby will be getting out of school in just 20 minutes and he is THRILLED he is able to updose today. And a huge part of me is as well. He will be going up from 1/3,000 a peanut to 1/1,200 and that is AMAZING. I know the number increases gets quicker and quicker since in just 26 more updoses he gets to 36,000 times to where he is now. Updosing. It's a good thing. It's a very good thing. But it is also a very scary thing. IYH all will go well today and we will have another 'boring' week. Coby is my hero. He is my warrior. He is my rock star!

And so I am going to sign off and start gathering up what we need for this AMAZING opportunity. I will once again throw on my brave face and we will do this together. Look out peanut--- we are coming for you!

UPDOSE DAY!!! FINALLY!!!!!

The day that I thought would never get here actually got here! COBY'S FIRST UPDOSE APPOINTMENT IN AN ENTIRE MONTH!!!!

Just two days ago I was pretty sure we'd have to postpone yet again. We spoke to the doctor this morning who told us to come on in because each time they assess the child before going ahead with dosing anyway. Coby got home from school and ran into the house all excited that we actually were going to try to updose today! He had 2 minutes in the house to pee and change before we had to jet out the door.

Carb loading in the car on the way to updose

Once we got thereI told her about some new 'symptoms' (real or not- I do not know) he had this past week. I also told her how he seems to have a runny nose for a few hours after dosing so I don't know if it's a cold or environmental or what but usually by morning he's fine. We even played the video that I took of Coby noisily breathing after yesterday's updose. She told us we should switch his flozane to the morning instead of night- since while it is effective 24 hours it is most effective its first 12 hours and this way it will be working best during dosing time.  The PA checked him out and said that his nose was a bit 'crusty' but no sign of allergy (apparently inside of nose changes color if it is) or a cold or infection. His lungs sound completely clear, his throat looked good (although his tonsils were huge though I think we all have huge tonsils) and she was 100% confident in updosing him today!

YES!!!!!

She did, however,  tell us that she detected a heart murmur so we need to get that checked out. We had recently gone through this with Mikey this past summer and at the time thought the murmur developed from his lyme disease since it never had been detected before. But who knows? Now Coby's got one too? Maybe it's a hereditary thing. Hopefully it's nothing, but obviously we need to make sure of that- but that's for another day (hopefully this month since we easily met our deductible this year).

She checked over our log of the last 30 at home doses and the symptoms that went with it. She again asked to see a picture of Coby's rash he got shortly after the strep crossing all "T"s and dotting all "I"s. Covering it all.

A nurse came in to check his pulse, blood pressure, blood oxygen levels and lung functioning. 

After they got his baselines it was dosing time!!!! Although this was our first updose at the office- in actuality he did have this dose one time before---- on that day one, nine hour appointment. That was the last dose of that day that caused so much discomfort and itchiness that the doctor called it a day, and downdosed our take home dose to the smaller level.

And now, we were going to try that dose again and see what his little body would do. Coby was sooo thrilled he was going from 2ML to 4ML and getting double that "yummy grape juice". His syringe was even fatter than all the others he had. (He actually ended up drooling a tiny bit onto his shirt which you don't want to be doing since every drop counts but the nurse said it's okay, it was just a tiny bit---it's not like she could dose him with more because that would have been a guess and taken him over his threshold- but sigh)

Sucking out every last drop. Bliss!

And then the waiting and watching began. They told us that if anything at all comes up call out to them- they would be right there and every few moments a nurse would come in to make sure he was feeling okay. On top of that, every 20 minutes they took his vitals. And he did awesome!!! Yes, he still did an occasional scratch & lots of mouth swipes- but now I know not to completely (inwardly) freak about those since he did the same thing with that placebo dose.

HE DID IT!!!!!! 

Appropriately this shirt says "fearless". That's my boy- fearless and determined!

He was so excited and proud of himself. He told me how his body basically cooperated and he was so happy!

While we were there there were two other kids updosing. One person was up to 100 milligrams. Wow- that seems forever away to us, though that mom was saying how she's so thrilled to be where she is because a few months earlier she didn't know she'd be able to get here- as it was a bumpy ride. Gee, that sounds familiar!

 The other boy looked to be about 12 and he was crying and panicking because he was about to dose with an actual peanut. I heard that often kids (and parents) break down at that point because until then the peanut is not recognizable but once you get to dosing with actual peanuts- they see the form of what had previously tried to kill them.

Out of curiosity we asked how many updoses are left until graduation and she told us that assuming there are no future down-doses (one can hope) it would be 26 more doses. TWENTY SIX! If Coby is able to go every single week (one can hope) that would be 6 and a half months away. If he would need to stay on a dose an entire month like he did this time that would be over TWO YEARS away.... realistically speaking it's probably somewhere in the middle.

26 seems like a whole lot.... but not when you realize how much is to be accomplished in just 26 updoses.
 Coby is on 100 micrograms (the equivalent of 1/3000 of a peanut).
Graduation takes place when the child gets to 12 full peanuts. (A food challenge of 24 peanuts occurs a few months later).
So in JUST 26 visits he'd be jumping from 1/3000th to TWELVE going up THIRTY SIX THOUSAND TIMES! 
36,000 times in JUST 26 visits- yowzers. 
That seems monumental and honestly a bit terrifying. But we are going to give it our best effort.

Before leaving and receiving the new fat syringe and jar of the new peanut solution we talked to them about what happened to Oakley and how terrifying benadryl is. I reminded her of how a few weeks earlier I was too scared to give Coby benadryl despite being told to do so. I was too scared it would mask anaphylaxis, so I waited three hours til the risk of anaphylaxis was mostly gone and only then did I benadryl when he began to scratch himself bloody.
So she sat with us and worked out a plan.
If anything (c"v) happens at the office- they are prepared and they can act fast.
If we are dosing at home and we are in doubt- epi.
If he has any mouth or throat itching he should rinse out with water (which often makes it stop) and just watch to see if it progresses. DO NOT BENADRYL.
If he has a few hives, call the doctor and watch to see if it progresses. DO NOT BENADRYL

If two systems are involved- even if it seems mild- EPIPEN. Even if there is only one hive and vomiting- epipen.
If breathing is involved and no other system- epipen. If he complains of tightness in throat-epipen.

I feel a little better- that they wouldn't expect me to benadryl with a single (or even a few) hives.

She said most (but not all) of the time the risk of anaphylaxis is greatest that first hour after dosing (unless there's extenuating circumstances like being sick or if the child begins exercising/getting heart rate up/running etc.- too soon- then anaphylaxis can occur past that first hour)

Door to door we were gone about three hours. Three hours may seem like the time commitment to do over and over again. But it is 'just' three hours (obviously not taking into account the two hours of dosing, observing etc each day at home).  There are people who drive five hours each way to get to an OIT doctor. There are people who get on an airplane every single week to get to their OIT doctor. Because we all realize if this works it would be so very worth it making all those sleepless nights, nerves, symptoms, cost, hours of travel feel like just a drop in the bucket.

Hoping and praying for a smooth symptom-free week and who knows- maybe next week we'll even get to go back and updose yet again. Dare I to hope...