tapering down treatments

[smartyjones]

with the example of saving sammy when they tried to reduce the abx dose and he had symptoms . . .

 

does anyone have knowledge/experience with this? how have those who have reached Beth Maloney done so - just saving sammy website?

 

we are working with a homeopathic protocol that is similar in theory to long-term abx. we are about 3 weeks into tapering from the ramp up and moving to a maintenance rememdy. even though we're not doing traditional abx, i'd totally appreciate to hear opinions from those who are/have done on this.

 

about 3 weeks ago while still on full dose, we saw some behaviors reminiscent of last fall first pandas episode - also dark eye circles, some finger flicking(never seen before - not too troublesome but noticeable). really troublesome behaviors only lasted about 1.5-2 days and weren't constant - i didn't know what to make of it - could be part of recovery or beginning of exacerbation. during this time, he also seemed to have improvement in rational reasoning capacities. after this short time, back to present self which is 93%ish prepandas self with maybe added rationality, finger flick remained. we had previously planned to begin taper at this time - b/c he was back to self, i did it - now not sure if i should have waited.

 

a few days later - begin tapering - mostly same self with some shirt chewing and a slight mouth rash that has historically been very bad with pandas exacerbation, starting not wanting hair washed, finger flick when agitated.

 

this past weekend - 2.5 weeks into taper - finger flicking gone, still chewing shirt, face rash clear, mostly cooperative.

 

past 2 days - looks/acts tired, eyes circles dark, seems more needy/whiney, whines about brother at breakfast table before him, everyone must stop eating dinner until he's ready, "you're so mean", teacher said he had trouble choosing what to do today.

 

i'm not sure what to think - is it expected adjustment b/c change in treatment? could it have been viral or other exacerbation a few weeks ago and still effects? was it too soon to taper and should go back to full dose? what about positive weekend?

 

it's so hard not to panic and to try to think rationally about what to do. dr doesn't panic and thinks could be all part of treatment but doesn't know too much about pandas specifically - more RF.

 

those on high dose abx, how are you planning to reduce? are you trying to get to 100% no symptoms before reducing?

 

 

thanks!

Kathy

[Worried_Dad]

Hi, Kathy:

 

Yeah, we just contacted Beth via the savingsammy.net web site. First traded e-mails with her in May, long before the book released. She's been very generous and responsive via e-mail.

 

As far as ramp-down: to be honest, haven't even contemplated that yet. My son's life has been a nightmare for so long, and the mega-dose augmentin has made such a big difference, we're currently planning to try to follow Sammy Maloney's example and stay on 2000 mg daily for a full year.

 

We'll see if the docs go along with that....