Saturday, June 14, 2008

Update by Petra, MOM Detective...

OK, so here's the 'cascade of events' I've been able to piece together...

Boys went to our Organic Farming Co-op late yesterday afternoon (I worked my butt off all day yesterday, boys were not with me).

It's sugar pea season. Salamander LOVES sugar peas. So he stuffed himself with sugar peas straight off the vine (farm is organic, so no issue there).

Problem is: peas are SUPER high in glutamates. Salamander has serious issues in glutamate/GABA conversion (you should see the amount of GABA this kid takes on a daily basis). Nobody reminded Salamander of the fact that he can only have a small amount of sugar peas, to not overload his system.

Farm is currently also growing WINTER RYE, which is being harvested now. Both boys have Celiac's, and of the 'super sensitive' variety. They react to even the smallest amount of gluten in the friggin' air!!!. So even though I am pretty sure that the boys stayed away from the winter rye itself (as they KNOW that rye is a gluten containing plant, and they've been drilled to stay away from all things gluten), as it was being harvested, it was bound to be in the air (and now I also have to go and find out WHAT the farm folks are planning on growing on that field that current has the winter rye on it, as whatever they'll be growing on it, we won't be able to have it due to soil contamination issues. CRAP!!)

Boys stayed at the farm for a long time. Didn't have their dinner until well after 7 pm (as they had filled themselves with sugar peas - shouldn't have been a huge issue, but still, eating this late can have had an effect on blood sugar regulation). Of course, a late dinner meant a late bed time (I worked very late last nite, so I wasn't there to monitor bedtimes). Late bed times do not necessarily mean sleeping in. Salamander NEEDS his sleep (open up any book on kids with bipolar type issues, and the importance of good SLEEP is the first thing that's discussed).

I noticed that their clothes smelled of dryer sheets. I do NOT use dryer sheets. Dryer sheets contain all kinds of nasty chemicals, as well as phenols. Both boys definitely have PST issues, Salamander more pronounced so. I asked the question, and yes indeed, their clothes had been dried using dryer sheet fabric softener. GRRRRRR (not that I have never explained before WHY WE DO NOT USE DRYER SHEETS AND/OR REGULAR BRAND LAUNDRY DETERGENT)

Boys had a big breakfast this morning with a LOTS of protein. Both boys have issues breaking down protein properly, if they get too much, it feeds an ammonia overload issue. Which puts strain on the transulphuration pathway, which was already under assault due to sugar peas (glutamates) and dryer sheets (phenols).

Boys got their hair cut this morning. Barber sprayed their hair with something. More phenol exposure.

While Potatey and I were at his K-garden Open House, Salamander and his dad WALKED to the town library. No biggie, but it is fairly hot and sticky outside (and heat, by the way, triggers the body into producing more GLUTAMATES), and they didn't bring ANY WATER OR SNACKS.

Salamander did OK at the library (but I am 100% sure he must have shown some signs of 'biochemical distress' when he was there.. as I said, they can be very subtle), but ran into 'trouble' on the way home. Couldn't walk anymore, couldn't talk any more, just started crying....

By the time I got back home with Potatey, Salamander wasn't home yet. But he literally CRAWLED in a few minutes after we got home, and he was a mess (crying, shaking, screaming).

Picture me going into DEFCON 1 (and I am not the most patient with the ADULT human variety when I'm at DEFCON 1, so yes a few choice words were spoken).

About 15 minutes ago, Salamander was at a point again that he and I could actually have a conversation, and that is how I pieced the above together...
Salamander also was able to tell me that, while walking back home from the library, he felt his lips get really dry, and that his mouth felt like it was swelling up, and that he was getting a really bad headache, and that he started to get all shaky, but as they didn't have any water or any other snacks with them... and as Salamander wasn't able at that point to TELL his dad what was going on, as Salamander's ability to communicate was 'kaput'...

Well, you can put the pieces together too.... biochemical TRAINWRECK!!!!!

None of the above is anybody's fault. It was an unfortunate stack up of events.

But sjeesh louise, we've been dealing with these types of metabolic 'everything goes to hell in a handbasket' crashes for a LOOOOOONG time (he's been having these types of episodes since he was 2.5 years old.. and TG in the past 2 years I've gotten a LOT better at understanding why and what we can do to keep things stable, and as a result, Salamander's crashes are much less 'deep' now and he recovers much quicker), and it's not that I haven't explained over and over again for each of the events above WHY they are an issue, and WHY these exposures should be minimized to the extent possible.

I know it's exhausting to always have to be 'on the alert' for the signs and symptoms. But that's just the way it is. And trust me, it is infinitely more exhausting to have to deal with a crash.
And yes, some of what let up to the 'crash' could have been avoided (but of course I can't say THAT without somebody getting all defensive on me).

Bottom line, I can never let anybody else 'drive the bus'....

(off to bang my head against the wall now..)

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