Exacerbation Lengths

[JPdad]

I'm curious as to what you all have seen over time with the length of exacerbations. Do they get longer/worse over time? What was the longest you have encountered? For us, as soon as the infection was treated we saw a 90% improvement in the first 10 days, then were back to baseline shortly after that. Currently we are almost 6 weeks in, with no reduction in symptoms yet. Is it normal for each episode to get worse? Do symptoms sometimes linger long after the infection has passed?

[dut]

Hi - our flares have been amazingly varied in length.

 

We also get the 2 phase thing going on most times, with a return to about 75-90% within a a few days, at best, and say about 8 weeks or so at worst but then we will be left with 25% or so that can takes weeks or months to fully resolve and in the case of our dd9 now never fully gets beyond roughly 95%. What's left is subtle but there. Our ds5 seems to get fully back to baseline but it's tough to tell for him as he got PANS so early.

 

Also both our kids can react to anything that provokes an immune response so that also probably lends itself to a varied healing time.

[Missmom]

Yes, for my son each has gotten worse, and takes longer to get under control. That is why so many of us here are on some sort of either prescription dose or prophylactic dose of long term abx. We don't want our children getting any more infections, etc.... These seem to make things that much worse. Some stay on prophylactic abx. even after full recovery, or ivig or pex just to help keep the immune system in check.

[kos_mom]

Bearing in mind my DS was essentially untreated, his first two exacerbations lasted about three months. His third went on nearly a year. His fourth lasted lasted around three and a half years. The third and fourth were bad initially for a month or two, then they settled down but not to a level that came anywhere near a definition of normal.

[NYCMom]

We also get very varied lengths of exacerbations, from a couple of weeks to a couple of months usually. This is without (diagnosed) infections tho, so I think my ds10 is often reacting to various outside exposures (school, siblings, etc.). I can almost always tell his teacher when someone in his class has strep before she even knows it. I also knew by his behavior this summer that he had contracted Lyme before his dr tested him (we live in lyme country). So we are now coming off of a much longer exacerbation because of it. That being said, he is 3+ years post diagnosis, was 2+ years on prophylactic abx and is now 1 year off all meds (besides the recent lyme treatment) and his ticcing and rage/emotional issues are waaaay less intense and lengthy than they used to be. We now vary between 80-99% including exacerbations.

[smartyjones]

i'd say our exacerbations are varied but getting shorter as health improves. ds reached a very good point in health about 1.5 years ago. i'd say maybe 90-95% -- leaving us with a muddled mix of what could be symptoms, what could be learned (or nonlearned proper) behaviors b/c he had onset at age 4.5, and what may just be 'him'. he had 2 exacerbations last year -- one due to extreme stress at school (I'm talking extreme -- which also left me with PTSD) -- that lasted maybe 2 -2.5 months. in the spring, he had exacerbation after an allergic reaction to sunscreen. that lasted 4-6 weeks. he's had a ramp-up recently that i am not sure -- could be halloween sugar overload-yeast, some type of exposure from school, reaction to slight cold he had -- ???. he seems to be pulling out of that after about 4 weeks.

 

we were seeing improvement from balancing copper-zinc levels but that didn't seem to help ward off this ramp up. or maybe it has a hand in the ramp up. so many variables!!! i'd like to try living in a vacuum to get some definitive answers!

 

although we have various causes, we seem to run in a 6mth cycle of ramp up. not sure if varying times is due to improved health in general or due to differences of causes of exacerbation.

 

we usually do see help from motrin during ramp-ups. we've not done steroids. still looking for a long-term use ant-inflammatory. i'm interested in enhansa but haven't tried yet.