Thursday, October 23, 2008

The Pee Alarm Thing

I wrote about here is showing PROMISE!

We just came out of our third nite using this approach, and the past two nights Salamander's bed has stayed dry. We have had some drips and drops in the jammies, but nothing major (and a heck of a lot less than before we tried this approach). So it looks like the "try to get the body/brain on a schedule" approach has merit.

To follow up on some of the prior discussions, Salamander's B6 supplementation level has not changed (and he has continued to take his usual enormous amounts of magnesium). It does like like he has started to USE his B6 supplementation more effectively. But I don't think that the bed wetting situation has much to do with B6 supplementation levels for him (but good thing to look into nonetheless...).

I truly believe that B12 has a lot to do with these issues for Salamander. I am about to increase his (and start a new delivery method - no, not shots) B12 supplementation levels again, so we'll see what happens.

In the mean time, we'll keep the "pee alarms" going. And I'll be floating my 'he is rigid as a plank during sleeping' concerns by his pedi tomorrow (but I am not expecting a whole heck of a lot of feedback; she's very nice and a great person for the routine stuff but she's way out of her league when it comes to the boys' complex of medical challenges)


At 10:05 AM, October 25, 2008 , Anonymous Jeanne said...

Very cool! Keep us posted! We really should start calling you "Sherlock!" ;-)

At 1:06 PM, October 25, 2008 , Blogger Petra said...

As in "No Sh#t, Sherlock."?????


Pee alarms continue to be in place, but it continues to be a bit of a hit or miss kinda thing. It's gonna take a while to solidly establish that 'body/brain' training. The pedi DID like the idea though (especialy the part about moving the alarms AWAY from his bed, so he has to get up and move around). In fact, she liked it much better than those commercial bedwetting alarms that are out there.

She does share my concern as to why this is flaring again, as well as my concerns around the "he is rigid as a board during sleeping" thing. This CAN be related to ATP deficiency or depletion (and ATP is the primary driver of mitochondria). As Salamander's lactate was a tad low on his latest MAP, and as he most definitely has mitochondrial dysfunction and as he's growing soooo fast now, all these things together paint a picture that warrants further investigation. More to follow on all of that.


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