What does healing look like?

[jph]

My son was had PANS for just over three years before we got a PANS dx late this year. Finally, he is on abx (day 23) with Dr. T being our dr. I would think I'd see changes by now, but I can't say that I am seeing anything positive or definitely related to the abx. Nothing is glaringly better. Things have changed (ocd diminished, more frequent and new tics, sensory issues less severe), but they could very well be attributed to the cycling monster that it's been for three years. I'm really curious what healing has looked like for you. Should it be taking this long?

[pr40]

as most here will testify, healing is a process not an event. we hope for a better quality of life despite life-long issues. not sure if the issues are going to be ocd or auto-immune or both, but getting our children where the THING does not define them, where they know how to cope, where they can have friends, partners, carreers, etc.
I don't think, however, that they will ever want to have children and perpetuate this to the next generation.
so, yes, healing is the extension of what you define in your post --- you can also call it not getting worse.

[MomWithOCDSon]

When we first started abx, we saw a dramatic improvement almost immediately . . . within 48 hours of commencing the dosing. But then things slowed down dramatically and would even, we thought, come to a stop. Initially, we thought the abx had perhaps done all they could/would for our DS, so when the prescription ran out, we didn't renew it.

 

But then, within 8 to 10 days, we saw the return of behaviors we hadn't seen for weeks. So we'd put him back on the abx, and within 3 or 4 days, the unwanted, returned behavior would subside. We'd leave him on for a few weeks and then try to take him off again, only to repeat the same pattern. Finally, after about 4 tries at taking him off the abx, we decided to leave them in place for as long as it appeared he needed them, and as long as we could secure renewals from our ped. In the end, he was on them for nearly 2 full years, and then we weaned him off very slowly . . . over about 4 months' time.

 

He's now been off abx for about 2 years, so it's been a total of 4 years since we officially started our PANDAS journey. And though the improvements have never been as dramatic as they were in those first 2 days, with the help of journaling, DH and I can look back and see clearly the progress he's made over that time frame. The unwanted things that he used to do which he no longer does, the good, age-appropriate things he did before the Great Exacerbation which he has returned to doing once again.

 

So, I would suggest journaling, if you haven't begun to do that already. It really helps track the changes, however nuanced! And hang in there. Time is, in our experience, a necessary component in the healing!

[nicklemama]

It was a long slow process for us. We saw improvement within the first week or two but it took a long time to see major improvement. You may need to switch abx. It's a journey, that's for sure. We are four years from onset and three years from diagnosis. We've seen ups and downs and it has taken a while to figure our what the infections and triggers are and what helps.

[FLmom]

My ds13 has been on augmentin for about as long. He started the day before Thanksgiving, but there was a period of 5 or 6 days where he did not take it. I haven't noticed any striking improvements either. He seems to be showering less (pretty much just if we are going out some place, whereas he was taking 2 a day several days a week). But other than that, OCD seems just as intense. I thought mood might be somewhat improved, but he did have a breakdown the other day. He's never had any tics, so I can't judge by that. If I don't see anything by our next apt (Jan 8), I'm hoping to have him try Zithromax and see if the changes are more significant.

[JoyBop]

Our son had his first flare last Christmas Day. We all suffered until May 3 when we finally became aware of pandas and had the positive strep test (in addition to the one that we treated last December). Within two weeks we was a dramatic improvement in his function but here we are, 7 month lasted, still on and and still suffering flares and chronic symptoms of OCD, anxiety, sensory, ADHD and other bugaboos. Yes its better and less debilitating but still a daily struggle. I ask myself the same question. I'm hoping our answer is IVIG as we haven't tried that yet.

[smartyjones]

jph -- I'm not sure what you are asking -- was he untreated for 3 years and has now been treated for 23 days? if that is the case, I would not think I would expect striking results quickly. if you have seen nothing, I do think I would expect something - but maybe minor, especially if he has been sick for at least 3 years. also, there are sometimes results that you don't seem to realize day-to-day, but are apparent only in retrospect.

 

I think healing is a lllloooonnnnggg process. God bless those who see more immediate results.

 

our synopsis. . . we were fortunate in that we got a pretty quick diagnosis -- fairly sudden onset(5 yrs ago, late Oct) and fairly quick diagnosis (Dec) and correct abx in Feb. he saw an quick - about 3 days - 100% remission on that abx. but - it didn't last once off the abx.

 

we then began our long road back. he was 4.5 at onset. I now say he was likely sick from ages 4.5 to about 7. that was WITH a diagnosis and treatment. he just had ups and downs and exacerbations and remissions.

 

I'd say it was about 3 years to stable health - with treatment. then we had a horrible situation at school that I believe caused a stress-induced exacerbation. that lasted about 6 weeks. then a few months later, we had an exacerbation I believe was caused by an allergic skin reaction. that also lasted about 6 weeks. so really, another year in healing - but I believe due to other factors than simply infection like we generally talk about.

 

now, he was quite sick last spring - fever for a few days and lethargic for about a week - only a very slight uptick that one may even just attribute to having been sick in a 'normal' kid. that was a good weathering a sickness after 4 years. previously, he was up and down with slight colds.

 

I'd echo momwithocdson's advice about journaling. when ds relapsed after the first remission, he went back on the same abx - although not initially at the same dose - at the time, I thought it didn't really have an effect. however, later and through notes, I realized that he did see improvement from it - it just wasn't the dramatic 100% improvement that he had seen before and we were likely expecting and hoping for.

Edited December 26, 2013 by smartyjones

[T_Anna]

DS15 has probably been sick for 13 years. He was diagnosed last November (2012). We have been treating aggressively since February 2013. He takes abx and antivirals as well as supplements. He has had five HD IVIGs (2 before plasmapheresis), we have started to see improvement in the last week.

 

He used to shower for 30minutes to an hour a night. He was meticulous with his clothing. Last January he stopped going to school, showering, changing his clothing etc. It has been a long road back. We hope that we are finally seeing the light, but it's in inches and we have miles to cover.

 

T.anna