Saturday, 19 January 2013

It Just Crept Up On Me!

I was trying to make this evening somewhat productive after the last few days have been a wash.  We have been in lockdown basically since the Dr. Brenner appt- which makes me highly suspicious that this is where we picked up the bug, and I haven't had a chance to sort through all of the supplement/medication changes we made.  I did get a chance to research them, verify doses, and order the best possible formulations, the ones that were not prescriptions anyway.  It was funny, when I took Nate in to be tested for flu, I brought our regular pediatrician the note that Dr. Brenner always gives me to give to her as communication and she said Jenny, I'm a doctor and I can't read this one.  Worst thing was I had had to call both the local pharmacy and our compounding pharmacy and ask about all of the prescriptions he sent in before I could decipher the word she was pointing to- Carnitor.  Now if a nurse and a doctor can't read your handwriting- that's pretty bad.  I'll cut him a break, he sends hand written notes to our primary pediatrician- he gets major points for that.  So anyway, I started by just writing out exactly what I am expected to get into these boys.  And that is as far as I have gotten- too overwhelmed.  I need a new plan- hadn't realized how much we were up to- like I said, it just crept up on me.  And this is also with stopping things that didn't seem to be working.....
Here is our current list (this is a good reference spot for me- guarantee I won't lose this :))

Nate 1/4 tsp qd
Jack 1 tab qd

1/2 tsp qd

3 grams/day- 1 scoop

P5P- Nate
50 mg tid

15mg/day 1/2 cap

GABA- Jack
700mg tid

curcumin- Nate
1 scoop qd

miralax- Jack
1 scoop/day

Inositol- Jack
2000 mg tid (1 scoop)

2ml qd

clonidine- Jack
0.2mg qhs

2.5mg 3x/week

1tsp bid

vitamin c
1/4 tsp qd

speak smooth (fish oil + vitamin E)
1 tsp qd

methyl B12 shots
Nate 3x/wk
Jack 2x/wk

transdermal glutathione
0.5ml 2x/d

Gasp.  I gotta find me a schedule, or a way to sneak an NG tube in while the boys are sleeping every night.  Seriously, is it just me, or is this just obscene for kids who don't swallow pills yet?  Well Jack actually can swallow small ones now, but I am not pushing my luck- actually maybe I should.!

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