Wednesday, May 14, 2014

Topping out on walnut for a while...

May 14, 2014
Day 355 (Almost a year!)

Well we hit the top dose today!  Woohoo!  2400mg of walnut flour.  We'll stay at this dose for a year.  I asked the allergist why it wasn't higher, and apparently this is the walnut protein equivalent of several nuts.  That was a shock, I had no idea it wasn't a one for one weight calculation.  (I thought we were still at less than one nut).  Everything seemed fine, we saw the somewhat normal redness right under his eyes, but no symptoms.  That didn't last long (also normal for him).  So we'll go in once a month now for a dose in office/monitoring/catch up.  After that year we will have his IgE levels retested and see if they've dropped enough to move on to the next nut.

That was a bit unexpected, but we've been so busy talking about school readiness that we missed that we were so close to this milestone :)

On that note - we've met with the elementary school nurse and assistant principal to discuss how we keep our little guy safe starting in two months (yikes!)  WCPSS (Wake County) has an allergy plan and an asthma plan that looks a bit like a choose your own adventure book (where you choose how you want them to handle certain situations like the lunch table and outside food).  Some of the choices were really non choices, and feel a little exclusive, but I get how a standard is much easier to implement.  (For instance he has to be able to either make his own food choices exclusive of an adult's input, or he can only eat food brought from home with no exceptions).  That's not a choice - he can't read labels, doesn't know all the places nuts can hide, and he's really too young to say no to all the tempting possibilities that will come up at school.  So only home food - always.  The bad part about that is the social exclusion from every party, event, candy handout, etc… for the whole year.  We're going to try to be the room parents so that we can offer to buy safe food/snacks for parties, but things will come up. We can have ice cream or things like frozen cupcakes stored at school and a snack box for the teacher to use in case of those surprise events, but he'll be different every time unless we bring in the food for the class.  So far he hasn't quite realized that he's going to be that kid.  It's time to start talking about it though, he has to get that he can't cheat the odds and take a bite of something.  We'd really prefer never to have to visit the ER again with him struggling to breathe.  At least all of the permanent staff and bus drivers are trained to use epinephrine. (yay!)  It also sounds like he can have an epi in room with him that will follow him around the school (they call this the red bag and in lower grades it follows the class everywhere - diabetes meds, epis, inhalers only).

The biggest points of contention so far (and they didn't really feel like an argument just things we have to sort out) are the school bus (does he self-carry on the bus and where is it kept), and what happens if there is a substitute (they are not epi-trained, anaphylaxis trained).  The bus I think we can sort out with them (and with the after care at the preschool).  They are willing for him to have it on him and that's a big deal.   Everyone likes to say the kids aren't allowed to eat on the bus.  Well, that's irrelevant since we are all well aware that they DO eat on the bus.  Some of them are on the bus for over an hour, we get it.  But we need for there to be an epi available.  Who knows what might be smeared on a seat where he puts his hands, or if he might give in and take a bite of something tempting?  The school wants it in his backpack front pocket, but that's too accessible to everyone IMHO.  We want it on his body (in a spi-belt).  That's what he's been wearing for months (with a trainer epinephrine injector with no needle).  It's under his shirt, small, and harder for another kid to get their hands on it.  The substitute issue is interesting.  For his Kindy year it's probably moot (there is an aide assigned to the class full time too, and the chance of them both being out is very low).  This is something the schools need to figure out.  Subs are not "normal" school employees, there are over 1000 in this county, and they are not epi trained (at least not unless you get lucky).  Leaving him in a class with a sub who doesn't know how to recognize or treat anaphylaxis at this age is not an option we're ok with.  The school didn't really have a good answer but said they'd look into it.   If they can't figure out something we may be picking him up if we find out they have a sub (and we may be asking for it in writing that they call us if his teacher and aide are both out).  We're willing to train a sub, but they aren't sure it will be allowed.  Ah the frustrations of HIPPA/FERPA, government policies, and ill thought out scenarios.

Other big news - for the time being we got denied for the trial at Stanford we were hoping to get into - but we're in their system and are watching (ok maybe stalking a little) as they continue to grow that research into Xolair and mass desensitizations.  Very very interesting stuff!

We did an allergy friendly easter egg hunt this year (no food) and the eldest kiddo at first was not happy until she realized that she was going to get a bunch of little toys instead of candy.  :)  That went well - and it was good to meet some other parents who know what it's like to have to stalk your kiddo at an egg hunt where there might be suspect candy.  We also met another little fellow at the allergist today doing peanut desensitization that I'm sure we'll be seeing every month since we're on the same schedule.

Any friends / fellow parents out there who are looking into this stuff, check out NC FACES on facebook or ping me and I'll get you on the group.  It is awesome to have a place to talk about this part of our world (when Enjoy Life Foods go on sale on zulily or amazon, what baseball games are nut free, how to navigate the local school system, 504 plans, etc…)

Thanks for listening - this one is getting long so I'll stop here and do another update soon!  We are so lucky to have friends and family that help us on this road.  Thank you all, you are blessings to all of us!