Sawtooth

[sww817]

What should I expect as far as sawtooth recovery? My son is 14 days into a steroid burst and month two of Augmentin (increased does after first month). I see lots of ups and downs. He seems so much more animated and expressive in general but then the anxiety seems to still be high and we still see the rages. The rages do seem to be shorter and maybe not quite as intense. But they are still there. It is hard to see the forest for the trees, I think. But would it be normal for symptoms to improve while others are not?

[Lisa1971]

For us the recover is literally one day good, one day bad...two weeks into this round of antibiotics Alex could not get through his timed basic subtraction problems (he's in third grade and an honors student) and was very wiggly...the next day his tics were much less pronounced and he sped through the same problems with time to spare...the next day...couldn't get through them again...now 7 weeks in...we are one day wiggly, the next day hardly any, the next day wiggly again...(math is not an issue)

 

when I say wiggly...his major tics are finger wiggles and shoulder shrugs...he will cycle through random others...sniffing, throat clearing, ect...but the finger wiggles and shoulder shrugs are his constants...

 

last episode all tics were gone completely about 6 weeks into the antibiotics...this time seems to be taking a bit longer...which I have heard is common...but we are definitely seeing improvement...

 

Best of luck with your son's recovery...

 

--Lisa

[smartyjones]

yes - the $64 million question - is it part of recovery or beginning of exacerbation? so hard to tell. i'd also be interested in other's thoughts, too.

 

i don't have my notebook so i'm going to state this from memory - which is quite blurred after son's exacerbation, then beginning to move to full-day school by staying for lunch, me starting new part time work, new stove and dishwasher delivered and huge leak in our basement that was filling 5 gal bucket in 15 minutes during storm all night the other night.

 

my son is using a homeopathic protocol similar in theory to long-term antibiotics. we were beginning a taper to another remedy. just before that he had 2 days of strange behavior. dr thought it was related to recovery. that was only about 1.5 days. around that time, he began to do things that could be slight tics - finger flick - all occasional but not usual. about 2 weeks later, he got the flu - fever, tired, vomit. only 2 days. then pandas behaviors that had been slightly surfacing started coming into force. not to disrupt life but to be annoying. we went back to full treatment that we had tapered off. also used ibuprofen which seemed to help behaviors and then have a wearing off time that was just about right. he's doing better although not back to where he was before all this - which i'd say was ~93% prepandas.

 

so - what's it all about? was it taper of treatment? was it flu related? was it a perfect storm of both? would it have happened no matter what? it's all so hard to know.

 

i do think maybe if you see some improvements it could be healing related. if none at all, then maybe not sawtooth recovery but maybe exacerbation or you need another treatment. also not sure how to gauge how long is too long for jumping in to avoid a large exacerbation with some other intervention. for my son, he had dramatic increase in repeating words, humming, smutty talk etc and slight in freak-out fight or flight reactions - which previously had been his biggest trouble. so even though he was getting abnormally upset, it was tempered and he could get out of it in a few minutes whereas before it was just a whacked reaction and would go on and on. he was definitely exhibiting behaviors but it wasn't debilitating. of course, you dont' want to wait until it becomes debilitating.

 

He seems so much more animated and expressive in general but then the anxiety seems to still be high and we still see the rages. The rages do seem to be shorter and maybe not quite as intense. But they are still there.

 

it seems like you are seeing some improvement so i'd tend to think it's recovery. i'd be interested to hear what your dr thinks if you discussed it.

[sww817]

Thanks for the responses and I hope to hear more stories and opinions.

 

Smartyjones- I have not spoken to my doctor about it all yet. We see Dr. Latimer and we will be going back to see her early January. This will be right after we finish a steroid burst (15 days in now). She wanted to see him after that. Fingers crossed that this is recovery!!!!