All we all really want is a safe world to raise our families. A peaceful and safe world for our children. Because our children are our everything. And with our journey through OIT that is what we are hoping to do- trying to create as safe a world as possible for our Coby-bear. As far as America is concerned we continue to pray that despite the fear that today's news brings that Hashem will protect us and keep us safe. G-d bless America!
And so I will not continue to write about the election and to be honest I know a hell of a lot more about the ARA H1, H2 and H3 and peanut proteins and IgE antibodies and component testing and classes of severity and allergy testing and allergy training than I do about politics because let's face it
We all woke up today worried and scared and afraid in what this means for the USA. (okay fine one more sentence about America) All the unknowns and uncertainties and what ifs. I, however, have been scared every. single. day for the last TWO THOUSAND AND FIFTY NINE DAYS (and anyone who knows me well would know that yes, I did the actual math). It barely registered in my mind of who was running the country because I didn't feel like my Coby was safe. And all moms know it is OUR children that matter most to us. Hidden peanuts in things such as OJ or canned corn or lollipops. Well meaning family and friends making occasional goof ups. People not understanding that something so tiny and so innocent was more potent than a loaded gun to my child. Playing in a playground where someone else could have had a pb&j sandwich for lunch leaving remnants on the equipment could cause a reaction. Children eating snacks from companies that don't label for cross contamination, yet upon us calling them we found out would not be safe for Coby- and hearing about the reactions that children have had from this 'seemingly safe' snack and hoping each day that Coby sees his friends eating these snacks that he is not tempted enough to try one despite his friends offering to share. (how's that for a run on sentence!)
Making another batch of homemade 'mini bites hoping Coby would look forward to having the 'yummier' version at home and not be tempted by what his friends have. Hoping that if there's a sub she is trained in what to do etc etc etc. Once you witness your innocent child nearly die you are never the same. You see the danger everywhere. You have to let your child out into that world and hope that those who care for him can keep him safe and are trained in allergy awareness...
...BUT apparently even training is not safe enough!!!!! I attended a CPR class yesterday and the instructor went ahead to 'teach allergy treatment'. He went ahead to say two things THAT AREN'T EVEN TRUE. When I tried to correct him I was dismissed. I will go ahead and write what he said here and what the RIGHT thing is to do in case any of you guys come across this situation.
The first thing he said that was wrong (which isn't AS big a deal as the second) is that when you administer the epipen you hold it for ten seconds in the thigh. NOW IT IS ONLY THREE SECONDS, NOT TEN. Studies were done that showed that all the epinephrine is actually administered in under one second and by holding it for 10 seconds in a thigh of a struggling child could and would result in bent and broken needles and lacerations in the child's leg. The most important thing is to hold the child's leg STILL and keep it in for just three seconds.
The second thing he taught that was SOOOOOO wrong and could literally be the difference between life and death was, "if the epipen is expired- do NOT use it- just call 911 and wait." WTF???? I am sorry but that is so wrong on so many levels. There is a 'window' on the epipen and as long as the window is still 'clear' and did not turn funky colors you go ahead and use it. Let me say it again: IF YOU HAVE NO OTHER EPIPEN OTHER THAN AN EXPIRED ONE YOU SURE AS HELL USE IT!!!!! Studies have shown that despite the 'expiration' date on epipens many remain 100% effective past that shelf life. Even three years past the expiration date- most epipens have up to a 90% effectiveness. And beyond the 3 year mark it can even be a 70% effectiveness. Did he just tell everyone to NOT administer any epipen into the child and just sit back and wait?!
Once a child has an anaphylactic reaction their next one can have their throat closing within seconds! A child (or adult) WOULD NOT MAKE IT TO THE HOSPITAL IN TIME WITHOUT HAVING HAD AN EPIPEN ADMINISTERED! Not all ambulances come equipped with epipens either! (Coby's didn't.) So a room full of people were just instructed that if they were to witness somebody going into anaphylaxis with that person's throat closing up and blood pressure plummeting, they should just sit back and wait because the expiration date might have been a month earlier? Or a few months earlier? ARE YOU FRIGGIN' KIDDING ME???! Obviously and hopefully the parent and school keep track of expiration dates, but if you have nothing else. YOU USE IT!!!! I repeat: WTF????
I mean with the price gouging on the epipens- with sets costing upwards of 600.00 there are people who literally cannot afford their child's life saving medication. So if all they have is the one from last year should they really NOT use something that has a 70-90% chance of working over sitting back and waiting which is a 100% chance of failure??????
So if THIS is the type of training my child's protectors are receiving then how safe is he really? This really makes my blood boil.
And that brings us to where we are today- our journey to try to keep Coby safe in this unsafe world he lives in. It has not been an easy decision. It is very scary at times. In fact for two weeks leading up to his first day of OIT I had a rash all over my stomach and back just from the stress of it all.
We are now nine days past that first appointment and.... oysh. Last entry, I wrote we ended up using benadryl because of those itchy weird spots that appeared all over his back and belly. The following day he still had some dots and even today now more than 2 days later not all of them have faded.
Is it from the OIT? Is he reacting to the microscopic 1/6000 of a peanut? Could it be a side effect of the strep? Could it be a side effect to his anti-biotics? Who knows? The doctors said they can't know for sure.
Every afternoon I dose Coby and I watch him. And still today he was scratching at his knees and chest and rubbing his eyes.
He was supposed to have his very first updose tomorrow at the doctor but the doctor cancelled the appointment. Coby's little body is still reacting to something and it is not a smart idea to updose now. We need his system to calm down.
I know in my gut that this (NOT updosing this week) is the right decision. And I know that slow and steady wins the race but I still find it so disappointing. I truly hope his itchiness is due to the physical stress on his body of having to fight both the strep together with his dosing and that once the 10 days of antibiotics is up and the strep is completly out of him that his body will acclimate faster to his future doses. Because if the current glitches are not due to those extenuating circumstances- are we ever going to be done with this?
I read stories of people boasting how they 'sailed through OIT'- how many of them coasted through day one with no problems all the way up to the end dose of 5mg (1/50th of a peanut) and were able to updose every single week with no issues at all.
...yet here we are. STUCK. Already. That in spite of most people being able to updose once a week--- Coby will have been on this 1/6000 dose for two and a half weeks. (And if he is able to updose next Thursday- he'll be on that dose for the next two weeks since the office is closed on the following Thursday of Thanksgiving).
Will he be able to do this? While OIT on a whole is 75-80% effective, Coby's doctor has an almost 100% graduation rate. Will he get there?
I also read the flip side of others trying OIT- those stories of HORRIFIC side effects and even several incidents of anaphylaxis. Others develop a disease of the esophagus. Others have horrible stomach cramps followed by hours of diarrhea and vomiting and so much physical pain that they have to just stop OIT. And I am grateful that that has not (bli ayin hara) happened to Coby. Granted he is only on 1/6,000 of a peanut but if by going slowly can help keep his side effects more 'reasonable' so Coby can continue on this path to safety and freedom then that is what we have to do. As long as we are on the road we still have a chance. It is NOT a race.
And so my fellow Americans giving up is not an option. No matter how bleak things may seem remember that hope is always stronger than fear.
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