Thursday, December 8, 2016

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 allergyhave 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: 

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!


No comments:

Post a Comment