reducing meds

[smartyjones]

i'm using different meds but the theory is the same so i'm interested in other's ideas and theories, please.

 

short version -- my ds, now 6, presented with whacked behaviors about 18 months ago. had high titers and positive culture. 100% remission with keflex and nystatin - 30 days treatment. about 30 days off meds, symptoms returned. again kelfex and nystatin, improvement but not as dramatic. for the past year, investigated many treatments - mostly homeopathic. last summer, fall -- was okay although not 100%. late fall, had a flu and exacerbation. seemingly free of strep. dh was extremely surprised ds didn't have strep due to behaviors. jan, 2010, i discussed if we should investigate lyme again and dr referred to new dr. after this discussion, ds seemed to improve in our eyes. march, terrible school conference, so went to new dr who found lyme and toxoplasma gondii. treating for these. march/april/may -- ds seems about the same as jan, feb -- 'okay, not 100%'. mid-may, dr sees improvement, begin taper down of meds. beginning about 3 weeks after that, possible small ramp up in behavior. mark above lip that could be impetigo starting - vanished in a day or two with neosporin. some small bumps around lips come and go. behaviors increase. begins mouth noises -- possibly tic?

 

last monday, i increased bacterial and fungal med back to previous dose. next day, see improvement - almost no mouth noise. later part of this week, much improvement with inappropriate reactions (one of major symptoms) and general cooperation. seeming stop of wierd antagonism he has with other kids when in exacerbation. happier attitude with older bro, 8. back to interested in older bro's baseball (it's tough, after-season tournaments - many games - it's hard for me to keep interest).

 

i don't think this is an exposure -- too coincidental with taper and increase.

 

what are people doing with adjustments to meds? are you just not adjusting and staying on a dose that seems successful? are you trying to reduce, then upping it and then trying again after a certain time frame?

[peglem]

When I reach a point where I see good things happening- I make no changes. My daughter will have to be stable for a very long time before I'll consider reducing abx.

[tpotter]

Ditto

[MomWithOCDSon]

We've been on this roller-coaster a few times already, and it has led me to be very wary of changing/dropping meds prematurely.

 

I think because the first positive "bump" brought about by the abx was so dramatic, we kept looking for that same response in DS13 as the abx went on. But it just hasn't happened. As you mentioned, if we decreased his meds and/or took him off, he would decompensate and then there would be improvement again when we began abx again, but nothing seems to have been as dramatically positive as that first time. It's hard because this is all so subjective, and DH and I constantly second-guess ourselves as to whether or not we're being too hopefull, too cynical, too impatient, etc.

 

So, ultimately, we've decided we've just generally been too impatient, and we've decided to stick with the abx for an extended period, without wavering. We continue to note small gains in DS with respect to his OCD behaviors, so whether or not those gains are attributable to abx or time or therapy or a combination of everything, we don't know and cannot hope to discern with any certainty. So we're going to stick with the status quo, I think, until we hit the year mark, and then maybe re-evaluate.

 

Of course, everything changes almost daily . . . didn't somebody else say it here a few months ago? We need to be open to dating . . . maybe even going steady . . . with a particular treatment, but don't necessarily get married to one until there's some overwhelmingly compelling sense that THIS IS IT!!!

[Phasmid]

I think no change should be made until 2 or 3 months of no symptoms, and then a slow taper off, not just cold turkey. I tapered my son's dose of vancomycin, and he continued to get one dose every few days, then once/week until two month post symptoms.

[T_Mom]

We have similar questions right now--Our D has been on Full Strength Amoxicillan for 18 months--and entirely symptom free (NO crippling OCD or mild tics) for the last 9 months of those 18 months.

 

At this time we are thinking of weaning off a bit and see how she does--

Since she was one of the children on this forum whose symptoms essentially resulted in an ENTIRELY different child, one who could not function due to sudden-onset entirely crippling OCD and mild tics...well, we are more then cautious...

 

BEST advice we ever got was to keep her on antibiotics for at least an initial 30 days--and we continued--the addition of 2 steroid bursts along the way brought her back.

[MomWithOCDSon]

We have similar questions right now--Our D has been on Full Strength Amoxicillan for 18 months--and entirely symptom free (NO crippling OCD or mild tics) for the last 9 months of those 18 months.

 

At this time we are thinking of weaning off a bit and see how she does--

Since she was one of the children on this forum whose symptoms essentially resulted in an ENTIRELY different child, one who could not function due to sudden-onset entirely crippling OCD and mild tics...well, we are more then cautious...

 

BEST advice we ever got was to keep her on antibiotics for at least an initial 30 days--and we continued--the addition of 2 steroid bursts along the way brought her back.

So TMom -- Would you say that the two steroid bursts made a dramatic impact in your DD's recovery? In other words, did they "jump-start" the efficacy of the abx, do you think? And what type of "burst" did you use: a shorter one (like the 5-day treatment we've been prescribed by Dr. K., more or less for diagnostic purposes), or a longer, multi-week one with a long taper?

 

Personally, I'm wondering if the steroid burst might not provide some "rejuvenation" to the abx therapy, but I'm wary of giving him something very short-lived that will give him additional help, only to fade away too quickly and therefore serve to demoralize him in his fight against all of this. Additionally, unlike a lot of kids here, our DS has had a tendency to be overweight, as opposed to underweight; Dr. K. attributes this to his fairly long-term use of SSRI's, which we are in the process of tapering off. Still, as I understand it, steroids can cause weight gain, and I don't want to further complicate his self-perception by helping him add pounds.

 

Any thoughts? Thanks!

[T_Mom]

Hi -- Yes, the steroid bursts were ESSENTIAL to seeing continuing progress with our daughter.

 

The first time we used a protocol similar to Dr K's but a little bit extended with a few more days to taper...YES it seemed to jump start her healing (and she had been severely affected by OCD for a month prior to that--holding saliva in her mouth, eyes shut, step-stepping, etc...)

 

I have posted our story so many times it seems, so I don't want to be redundant, but in a nutshell:

Our daughter did not really start (and continue) to recover until she was on FULL strength antibiotics for an extended period of time...

 

Once we went to long term full strength antibiotics she started getting better and better and we could see weekly progress as symptoms slowly dropped away...slowly!

 

After about 3 months of progress (while on full abx) she plateaued -- and we tried a second steroid burst, this time a similar strength but with a much longer taper--so about 3 and a half weeks total. Within days of starting the steroids she was so remarkably improved (all the while we continued and still continue the antibiotics to this day!) her teacher called us and exclaimed she was seeing an entirely different child then she had seen all year long--

 

It was a remarkable recovery. Truly, in our case, LONG term antibiotics full strength has helped bring her back to fully herself--110%. Two steroid bursts along the way truly helped her.

 

You won't know until you try.

 

Re: weight gain--I have never heard of that with steroid bursts. Yes, our d had a full looking face when on the steroids but it went away within a week or two. No big deal. I truly hope you get the answers you are hoping for--

[dcmom]

Want to agree with Tmom-

 

the steroid bursts were essential for my kids as well.

 

DD, 7, did a steroid burst at onset of second major episode post H1N1 (post pex)- and it stopped it in its tracks. Maintained improvements since Oct 09.

 

DD, 10, did a steroid burst after pex, when improvement plateaud, accelerated improvement, maintained improvement since April.

 

I personally think steroid bursts (the month long tapering dose) are absolutely KEY to recovering and managing PANDAS. For my kids- they have also been compassionate.

 

The steroids increase the child's appetite for a few weeks, while on dosage.