AND THE JOURNEY BEGINS....
We actually ended up travelling to the further office in Monroe because they had an earlier consult day which would mean Coby would not have to miss school for this appointment. Future appointments will be a bit closer in Suffern.
Upon seeing the building Coby said, "it's not tall enough!" Coby was insisting that the building needed to be bigger in order for it to be doing such a big thing. I assured him that where we will be going from now on will be bigger (after the nurse told us so.) We very quickly fell in love with the staff there. The nurse Nicole as well as others loved the shirt he was wearing saying they have never seen such a cool shirt and asked if it's possible to get it in their size.
We were excited to find out that nurse Nicole will be with us at the Suffern office as well. And Coby fell in love with the doctor who had him cracking up when he tried to listen to his heart through his head. Getting my child (and me) comfortable in such a scary process is HUGE. Thanks doc!
We were there for nearly three hours getting our 27+ questions answered.
I admitted to him that I felt like I was 'cheating' on our Mt Sinai doctors who seemed opposed to OIT. I told him once Mt Sinai started doing clinical studies and we couldn't get Coby in we figured might as well look into it more. He told us that he attended conferences given from the doctors at Mt. Sinai and it seemed that the main reason they were opposed is because of $$$$$. They are trying to develop a peanut patch (which would still be years down the road) that would bring in billions of dollars. I read often doctors are opposed to things because of their own greed and not necessarily the best interest of the patient, yet it's still hard to trust....
He told us that he also attended conferences given by the pioneers of this down in Texas and how he sat on the information for over 4 years wondering if he can do this. Taking this on is HUGE. It means accessibility 24/7 to answer patients calls. It meant him almost doubling his staff to be able to accommodate OIT.
He sat with us as long as we needed.
....but not all my questions are answerable. There is no "set protocol", it varies person to person. If successful and Coby passes a food challenge at the end of this he'd be able to eat whatever he wants whenever he wants without even looking at labels PROVIDED he eats his maintenance dose every single day perhaps indefinitely AND he'd still have to carry his epipen BECAUSE he is still allergic AND random reactions can still occur. ARGHHHH! BUT the chances of that happening is much lower than it happening before going through OIT. On a whole he will be protected. He will be free.
I was a bit concerned when he told us that on day one he attempts to go up ONE THOUSAND times the starting dose in one day to 5MG of a peanut (which is about 1/50th of a peanut). On my own research of parents going through this I read that people who stop at less than 3MG have much less reactions going forward. And I was told by his allergist that Coby can react to 1/100th of a peanut anaphylactically. He told us that if someone were to start reacting, the lower dose before reaction becomes his at home dose- but if someone makes it through the entire day the 5MG becomes their dose. We asked if Coby does not react but we want to stop at 3MG will he allow us to do that, and he said he would but it can add months to treatment. I think I will need to research this a bit more before deciding what to do.
He didn't give us a clear answer regarding probiotics. "Do it if you want to.... can't hurt, though I'm not sure what the studies say regarding reactions..."
He told us during 'allergy months' he may put Coby on a daily dose of zyrtec so he won't have the environmental allergies adding to the food allergen which together can cause a bad reaction.
He told us some people have a very smooth road through OIT while others are extremely bumpy, but one cannot tell beforehand. He's had kids he was sure would have a horrible time sail right through and vice versa.
He wanted to do a skin test on Coby for peanuts, which no doctor has done before (we know he's very allergic, we have his blood results, so why put him through that.) He assured us that in case of reaction they are equipped to deal with it AND due to Coby's severity they would dilute the solution down to 1% of what a normal skin test would be.
Coby was very brave and didn't even flinch through all the pricks (about 11 in total), though as the seconds and minutes ticked on he was not a happy camper as he got more and more itchy. I was able to distract him from scratching and his misery by taking pictures of the faces he was making and showing them to him which made him laugh.
After just a few minutes of waiting his peanut test was growing redder and bigger by the minute. The doctor said that this was a "significant reaction" to something diluted to such a miniscule amount.
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| just a few minutes into the test, it continued to redden and grow. The control is the top right. |
the doctor re-examined him and told the nurse to give him a dose of steroids as well and then to be observed several more minutes and we scheduled him for a blood test tomorrow as well.
He explained to us that the first part of OIT that takes several months is microscopic amounts dissolved in kool-aid that they'd provide, followed by months of a capsule that has to be compounded at an apothecary that we'd have to get, followed by actual peanuts.
And very nervously, (while I literally asked the nurse, "will you provide ativans to the nervous parents on day one?") we scheduled Coby for his day one. Ten days from now on Halloween, when most allergy children who will be trick or treating will be doing so full of trepidation in a minefield of their poisons. Obviously we don't observe Halloween but I am filled with nerves for upcoming Simchat Torah and all the candies and chocolates that are handed out then, and I can sort of equate our Purim to their Halloween, so maybe it's appropriate Coby is beginning on that day- the start of his freedom. (though in order to get to that freedom he will have to be even more restricted for several hours each day than he already is.)
He handed us a brochure and several pages of reading material but right now I can't wrap my mind around anything more. I think I need to give myself a day to decompress before I gear up to continue. But first his blood test tomorrow afternoon for IgE component testing. Sigh this jargon is becoming as common as the back of my hand. I once again am getting an education from the school of necessity.
By the time we arrived back home I had already started a list of new questions. (like- well, if itchy lips can be a normal reaction, and throwing up can be a normal reaction- but throwing up together with itchiness can be anaphylactic reaction how do we know if it's normal(ish) things that can be anaphylactic or not? (Though the doctor did tell us they ended up epipenning a child last week who was clutching at his throat after an updose... turned out the kid had strep. better safe than sorry! Though if there's a way to learn what is necessity and what is 'normal', that would be nice since at 700.00 a pop, it would be nice not randomly flushing it down the toilet for stupidity!
Obviously I cdon't want to be epipenning and visiting the hospital several times a week for 'annoying normalcy', but the flip side..... ARGH!!!!! HOW WILL I KNOW?????
TOO MUCH INFO..... NOT ENOUGH INFO...
But here we are back at home, and upon arriving at home there was a package waiting for us....
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| old one used to be as bright and shiny as his new one |
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