User talk:Cmaczko

From PWS Notes
Jump to: navigation, search

Tommy: 21 mos, upd, 28lbs, crawling, cruising, vocab: ma (Mom), da(Dad), ba(bottle), mo (more), white, what's that..... on O2 while sleeping (in tent); sats monitored 4x/day, GH since 5.5 mos.. Sleeps OK - occasional night terrors. Generally happy, playful, nice kid - great fun!

Just started Tommy on Carnitine Fumerate today - starting on 1/4 capsule (Doctor's Best, Best L-Carnitine Fumarate, 855 mg, 180 Veggie Caps) 3x/day - first dose 2pm - so he'll only get 2 doses today. Mixing w/a tiny bit of applesauce (organic, no sugar added, of course!). Can't wait to see what happens next.

Note: he's been on L-Carnitine Tartarate (sp?) for @2 wks. Also giving him MSM - would love to hear if anyone else is trying MSM - connective tissue, PH are my interests there.


Took him off L-Carnitine Tartarate (sp?), until I can find L-Carnitine Acitate 50mg - still hunting.

CF at proper dose 2-3x/day now. (we started w/probably 3x too much = zero to balistic in .03 seconds).

Results to date: more stamina (he wants to dance forever - and you can't chase him long enough!), more speach (he told his ST "Iwuvu" - in order to avoid what SHE wanted him to say and still get the toy she was using as a bribe - YIKES! He really is a Maczko! She of course gave him the toy! :)) He is also actually jumping and "getting air" - albeit tiny air, but perhaps 1/4-1/2", which is a first. Also now willing to tackle larger obsticales (ie: crawling DOWN the stairs - w/o melting down -, crawling over large objects like Mom's legs, crawling up onto other levels - stairs, treadmill, can't get up onto couch yet...)

All in all, so far so good.