Does he down-dose? Skip dosing? For how long? How long will it take to build back up? What if his body fights building it back up? Will he have reactions?
We actually had a nice long run of being illness free. About 11 months in fact--- so really I cannot complain. But when that illness does finally come around it brings with it a whole lot of stress.
So the day came when he woke up with a bit of fever.
Crap!
We paged the doctor who said to half dose him.
We did.
And the next day he was fever free and back to his full dose with no problem.
Huzzah!
Amazing--- just one day of low grade fever and that is it?
We really dodged a bullet!
Will we be illness free now for another 11 months?
Yeah right...
Six days later again he had fever again.
Are you kidding me?
Six days?!!!
Here we go again...
We again paged the doctor who said that 101.5 is a true fever so we should completely skip dosing and call back the next day.
We asked the doctor to give us an exact road map.
How much fever means half dose? No dose? Then what? For how long? How do you build back up?
The doctor said he can not give us a map. He said sometimes low grade fever with the child acting off could mean no dose. Sometimes no fever with the child simply acting off means no dose. Each situation can be different, so we need to always page the doctor with anything out of the ordinary.
The next morning Coby had 103.
Oysh.
We brought him to the doctor and he was diagnosed with the flu.
Crap!
People on the OIT boards said their kid had to completely skip dosing for TWO weeks with the flu!
What are we going to do?
We called the doctor and he shocked us by telling us that we should get his fever down with meds and then to give him 3/4 of his dose.
How does that make any sense?
When he had strep a year earlier even when he was fever free the doctor down-dosed him because his body was fighting the strep.
A day earlier when he had lower fever he had to skip dosing and now with higher fever and the flu he should have most of his dose?! And this year's flu has been particularly bad- kids have even died from it! And yet we are still to give him most of his dose?
I didn't understand one bit.
But we had to trust our doctor.
We motrined him.
45 minutes later he carbed up.
But an hour after motrin his fever was even higher than it had been, so we pushed off dosing and piggy backed him with tylenol.
He carbed up again.
His fever was finally under 101, so we 3/4 dosed him.
And waited with baited breath.
And he was fine!!!!
JAW DROP!
The next day his starting fever was just 101.
We motrined him.
Carbed him up.
Again his fever climbed after the motrin.
Tylenol.
Re-carbed him. (poor sick kid who we are forcing to carb up twice)
Fever came down.
We dosed him.
Again- fine!
How is this happening?
I'm obviously not complaining that dosing went without a hitch but I must say I was shocked that despite fighting the flu and having a fever, he wasn't reacting to his (3/4 of a) dose!
Amazing!
Six days later he was completely fever free and he was back at his full dose with no problem!
We successfully navigated our first illness and he did great!
Booyah!
Now hopefully we can we get another nice long reprieve before having to deal with the next illness.
In other good news after a lot of back and forth calls with the OU rabbis who needed to look into the ingredients, equipment and facility for us, we found out that the PB2 powder is NOT chametz and just kitniot and Coby was permitted to have it on Pesach.
Thank G-d!!!
I covered a chair with foil and kept it separate from the rest of our Pesach items and we've been dosing Coby by that chair every day. We also had to buy separate measuring spoons just for the powder. After all he is the only one in the family allowed to eat that kitniot.
And now we've basically have come as far as we can go in OIT (unless sometime in the future his IGE numbers continue to drop and his OIT protocol gets changed).
12 peanuts two out of every three days and 4 tsp of powder on the 3rd day.
His doctor said he may have a problem doing powder only every 3rd day and we may have to switch back to every other day, but we won't know that until tomorrow- his first 2 day skip of powder since beginning this a long while ago.
But let me just add in here that about a week ago when it was time for Coby to skip his first powder dose and go back to the full dose of 12 peanuts-- he did it without a hitch! He had not had his full dose of 12 peanuts in MONTHS. He hadn't had any peanuts in WEEKS (since while building up the powder dose he had been only partially dosing with peanuts in addition to the powder and then he had zero peanuts for a few weeks as he was given the full dose of powder). Once again I was worried that after all this time his body wouldn't remember the peanut form, but it accepted all 12 peanuts with no issues at all.
It truly is miraculous.
In fact, for the first time ever for Pesach we bought chopped and ground up nuts.
Chopped pecans were added to the matzah crack.
Ground almonds allowed me to make a yummy crumb coffee marble cake, pizza dough and miracle bars.
Forget about not having to read labels--- this year we actively searched for nuts (the edible kind)!
Pesach so long ago we were granted freedom from those binding chains of slavery. We celebrate that.
Pesach of today, we were granted freedom from the binding chains of Coby's life threatening allergy. We celebrate that as well.
From our family to yours we wish you a healthy safe and happy Pesach.
Chag Sameach!
