Tuesday, October 21, 2008

Am NOT Giving Up..

Thanks y'all, for your support and thoughts.. It helps to know that Salamander's struggle is not unique, and that it's OK to take a few steps back.

That being said, I have to take into consideration that Salamander is now 10.5 years old and very, very, very aware of what is appropriate and what is not. And he knows that you're supposed to stay "dry" overnite, and he has a 5.5 year old brother who is doing exactly that most of the time.

So he does NOT want to go back to the "pull up" stage (I haven't looked at the "almost like underpants" stuff that seems to have come out more recently; I will do that later today). In fact, Salamander was crying last nite that he does "not want to become a diaper baby again" (I swear, I never mentioned the diaper word; this is his own extrapolation from pull -ups).

So he and I did some brain storming and there are a few more things we are going to try- we'll have an alarm go off at every 2.5 - 3 hours during the night to see if we can get his body/brain on a "pee schedule". And the alarm will be placed AWAY from his bed, so he needs to GET UP to go shut it off. We started some initial experiments with this last nite, and we both learned a lot (as in, as soon as he gets up to turn off the alarm, that neurological feedback loop DOES kick in and he has to RUN to make it to the bathroom in time). So we'll make some tweaks tonite and will give it another go for a few nights.

Yes, it would be easier for all parties involved to just go back to the pull-ups; more sleep, less stress, less laundry. But I have to take the psychological/self confidence issues into account. Salamander is at such a critical stage in his development...

Plus, if this approach does not work, we can truly say "OK, we tried everything we can think of. It's just not working right now. Time to give it a rest and try again in a few months."

Will keep you all posted..

[off to do more laundry. While we learned a lot last nite, we did have a few more "oopsies"]


At 10:26 AM, October 21, 2008 , Anonymous Jeanne said...

Petra, Is Salamander getting B6?

At 10:42 AM, October 21, 2008 , Blogger Petra said...

I think we're OK on B6 (at least his latest MAP shows we're doing good there, just like we're doing good for thiamin, riboflavin, niacin and biotin). Salamander has a really hard time processing P5P (there is a little P5P in his multivitamin, but only a little; it is most definitely not at the levels typically recommended by DAN!), so a pinch goes a long way with him.

I suspect it's more of a B12 issue (latest MAP shows high need for B12 again). When he first came out of pull ups, his B12 levels had finally coming up nicely. His B12 levels have dropped since again (there are other signs that his B12 levels are not holding steady; we have some language retrieval issues as well), and I am having a heck of a time keeping them stable and up (my boys are the black hole of B12 due to all of their MTR/MTRR mutations). I may need to do a trial with B12 shots.. it's the only option I have left in giving his B12 levels a big boost..
Salamander is also having BIG dopamine regulation issues again, which may also tie in.

Thanks for brainstorming with me.. Keep it comin'..

At 12:51 PM, October 21, 2008 , Anonymous Jeanne said...

I wasn't suggesting he needs B6... here's where I was going:

Back in the day when B6 was originally researched for autism, one of the side affects was bed wetting. Bernie (I think it was Bernie) then determined that mag levels needed to be in place or the side affects (especially bed wetting) would be an issue. Hence, if I remember correctly, why B6 is now combined with mag.

I put Charlie on B6 (Kirkman, with mag), and within a week he started wetting the bed - this from a kid who never wet the bed - even when he wore diapers he kept his pants dry all night (daytime was another story altogether). Also, at the time Charlie was being supplemented with magnesium... so between the daily supplement and the B6 tab, he was getting lots of magnesium.

Sadly, he was absorbing very little of the mag, so the B6 was causing all kinds of problems, specifically bed wetting - not just small amounts, but a HUGE amount - I used to wonder at how much urine would come out of him.

I removed the B6 and within days the bed wetting stopped.

Now, I'm not saying this is Salamander's prob, I'm just sharing in the event something sparks a thought in your mega brain. :-D

Keep me posted, I am interested to hear what you come up with.

Oh, and if my mother hits your site and reads this comment thread, maybe she'll open up and share the story of when she tried out the B6 tabs... Jan? Are you here? Care to share with the group?

At 1:14 PM, October 21, 2008 , Blogger Petra said...

Ah!!! Interesting, very interesting.... can you hear my brain clicking in gear???

See, I have made some changes in other areas that may (or may not) have affected how Salamander absorbs his various supplements (as I am really focussing right now on improving digestion and gut environment as part of the bloated belly battle). And Salamander has also been peeing HUGE HUGE HUGE amounts during the day (as in "race horse"). Now I am used to seeing that when detox steps up (hence pee-tox), and I am waiting for the results of another UTM..

Definitely more angles for me to research and look into...

Another angle that I am seriously considering is a sleep study, as I don't think that the quality of sleep that Salamander is getting is that great; he is stiff as a plank during the nite, with very rigid muscles, as opposed to all relaxed and floppy like Potatey. And yes, related to that stiffness and the return of bedwetting I am thinking subclinical nocturnal seizures. Salamander wouldn't be the first male child with ASD who develops or experiences an aggravation of a seizure disorder upon entering puberty...

At 1:19 PM, October 21, 2008 , Blogger Petra said...

Oh, and I'll admit it. Salamander has never had an MRI or an EEG or any other type of brain scan. I probably should have had those done.

But between his extreme anxiety around any and all interventions that need to take place in a doctor's office/hospital setting AND the need for either sedation (which can have big detrimental consequences for him) or sleep deprevation (not a good idea for a child that runs on the bipolar side of things), the risks just never outwayed the benefits. That may have changed though..

At 8:52 PM, October 21, 2008 , Blogger Renee said...

I was so happy to see the update title on your blog I had to rush over!! I am so glad that Salamander is so invested in solving the problem and not relying on pull ups. That speaks a lot to his personality!!

And, your discussion of B6 made me realize that the minor setbacks we had over the summer coincide nicely to when we added P5P. It resovled within a week for us, so I didn't give it much thought, but nice to have a reason!

Good luck to you both!!!


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