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We talk alot of about "exacerbations" with PANDAS. Can you respond as to what this means specifically for you? How long do they last - or do you ever even see a "break" from them?

My husband is so tired of the disorder that he is beginning to question PANDAS in the first place because our dd never seems to catch a break. If we get a break, it may be for about 3 days. I think we go through the "exacerbations" for so long because she's had this for 4 years.

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We talk alot of about "exacerbations" with PANDAS. Can you respond as to what this means specifically for you? How long do they last - or do you ever even see a "break" from them?

My husband is so tired of the disorder that he is beginning to question PANDAS in the first place because our dd never seems to catch a break. If we get a break, it may be for about 3 days. I think we go through the "exacerbations" for so long because she's had this for 4 years.

 

In the past, for us, an exacerbation was typically a month or two. We, too, however, have been dealing with this for a long time (6+ years), and the one he's in now has been going for about five months. It's not yet entirely waned, though we, too, see bright, shining days of 90%+! I keep holding out hope!

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An exacerbation to me means that my son has a bunch problems and disorders surface as a result of PANDAS. Then I also say my son has setbacks. What I mean by that is he was in the mist of recovery and things start to backslide. I consider the exacerbation over when those problems are gone and my son is back and stable. For me, the sign that an excerbation is here is when he has horrible meltdowns over irrational things and OCD. That means he needs a strep test.That's how it starts and over the course of a day or two many more problems and issues arrise.

 

I used to refer to exacerbations as episodes befroe I went on this forum.

 

I also try to distinguish my son's exacerbations as strep triggered and viral triggered. They vary in severity and symptoms. Strep triggered are in a total separate catagory.

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An exacerbation to me means that my son has a bunch problems and disorders surface as a result of PANDAS. Then I also say my son has setbacks. What I mean by that is he was in the mist of recovery and things start to backslide. I consider the exacerbation over when those problems are gone and my son is back and stable. For me, the sign that an excerbation is here is when he has horrible meltdowns over irrational things and OCD. That means he needs a strep test.That's how it starts and over the course of a day or two many more problems and issues arrise.

 

I used to refer to exacerbations as episodes befroe I went on this forum.

 

I also try to distinguish my son's exacerbations as strep triggered and viral triggered. They vary in severity and symptoms. Strep triggered are in a total separate catagory.

 

Does the strep test always come out positive when he has the irrational meltdowns and OCD? For me - it has been negative 90% of the time. However, about 20 -30 % of the time, I find that she has been around someone with strep.

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I mean this as lovingly as a mom can...but when he starts to act like an insane person, to date, it has been strep triggered w/ a positive strep test with one exception. Early on in the recovery of his third exacerbation, he was back to having out of this world anxiety surrounding OCD tasks with meltdowns in public. I took him for a strep test and it was negative. I realized about a week or so later that allergies triggered that one. I think that one was so bad w/o strep being present because he was still recovering from a strep triggered exacerbation. It was only a couple weeks post strep. Once I got his allergies under control, the behavior went back to where they were in the recovery process.

 

When he has a slight exacerbation caused by a virus, it seems like it's usually a higher sense of emotion with a lot of easily triggered crying, maybe very slight OCD, and overall, I can just tell it's crept back in. It is not the insane child I get with strep. he will be functioning and no one else would probably realize something is awry. I've learned with those, to ride them out and they go away when the virus is gone. I just keep my eyes peeled for his usual strep induced behvaior. The second that comes along, I will run to the doc for a strep test.

 

I don't know how he reacts to exposure only. When he gets strep, I take the whole family in. The only time his sibs have tested + for strep, he had it as well. As for viruses, when his sibs have a virus, he is usually getting over it or comes down with soon after them. So it's been hard for me to find out how he reacts to exposure w/o any illness on his own part.

 

Is your child on abs when they get tested? When you say yours test negative, is that through a rapid,culture, and/or titer test? Finally, what abs has she been on and for what amount of time?

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Hello

 

For us exacerbations come on fairly fast from a baseline of no symptoms .. we have maybe a couple of days with some OCD (sometimes tics but not with the most recent exacerbations) then the labilty/combative/hyper stuff comes in and then it really ramps up. For us we have always gone back to a baseline of being symptom free, with the longest exacerbation lasting 5 months or so, although for the last month or so of that one only we in the family could see the symptoms.

 

Up unti this most recent exacerbation we have only used abx. The longest exacerbation our dd ever had didn't appear to respond to abx. Time seemed to be the only cure for that one. 5 weeks or so ago, we started with an exacerbation. ! week in we did a 5 day steroid burst. We saw instant improvement and by day 5 all symptoms had gone. We are 3 weeks post burst and seeing really mild stuff creep in at bedtime. If it ramps up again, Dr T said it is ok to do another burst.

 

Each episode has been slightly different for us, different symptoms, slightly different start and different length of episode. If I understood what Dr. T said to me during a phone consult, he feels that each child responds to differing levels of treatment and remits more or less quickly and to differing extents depending on how long they have battled this untreated and just how ramped up their immune system is. If you were lucky to catch the disease early on in its course (and the episode too, I presume) then lower levels of treatment work and treatment works quicker than if the disease has been raging for a while. You can calm it all back down more quickly if the immune system has less calming to do....

 

Apologies to Dr T if I got that all wrong...

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Sorry, I also meant to say we have never had a positive group A test only 1 positive beta hemalytic not group A and never had positive ASO or antiDNase B titers, only an elevated IgM streptozyme. I still feel we are clinically classic PANDAS with high cunningham and good response to abx during some episodes and good response to steroids.....

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For us it means increased anxiety (more like panic) and uncontrolable OCD. His "baseline" at this point is mild OCD with frequent handwashing and some other stuff. At the beginning of an exacerbation we see: dilated pupils, the "caged animal" look, melting down over small stuff, asking tons of reasurance questions, scrupulosity, spending too much time in the bathroom, washing like a surgeon almost up to his elbows, not wanting to touch "contaminated" things with his hands, etc. All these things are there most of the time, but he can go about his day without problem. During an exacerbation, it becomes all consuming.

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For our son, these are the times where his symptoms have gone from "mild breeze" to "violent hurricane" overnight or in a matter of hours. The last time, it was literally like watching a storm roll over him: he started trembling (almost like a palsy) and then his OCD, tics, and anxiety just exploded to the point where he was utterly incapacitated.

 

We see the more normal waxing and waning sometimes, but the exacerbations are obvious for him... and terrifying for the whole family. I pray we never see another one like the last one. And I pray we all find the treatments that prevent them for our poor kids in the future!!!

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Is your child on abs when they get tested? When you say yours test negative, is that through a rapid,culture, and/or titer test? Finally, what abs has she been on and for what amount of time?

 

The last time she was tested, she was not on antibiotics - the test was negative via rapid culture. I'm not sure that they have ever checked her titers before we started investigating PANDAS. She went in back in July when we were really pushing our ped. to give her the antibiotics - she went totally symptom free and he said he would only give abx if she had strep. I begged him to do a culture even though she was symptom free and it came back positive. Her titers remained elevated until November (which I understand is normal). After that, I had her tested when she was exposed to strep and they have been negative. She is currently on Zith at 500 mg per day and has been on it since Dec. 11. She just went from 250 per day to 500 a week ago.

Since being on Zith we have noticed some improvement - her handwriting is remarkably better and we have less meltdowns, although they are still present. Her OCD seems to have remained at baseline. Because the OCD is what is so prevalent in our situation, I am just trying to figure out when she would go into what would be called an "exacerbation." I guess I can't really judge it based on just that.

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For us, an exacerbation means that Megan has an OCD dial up of about 20-25 points on the Y-BOC scale. This happens to her within about 7 days. It causes panic and agoraphobia. Whatever is normal or joyful for her - she loses it. Untreated, these seem to last a varying length from 4 weeks, to the last one, which was 5 months - but we think was due to 2 actual events. She never runs high titers either. We usually see an ear infection within two weeks - although the second part of the last exacerbation (which had a second peak) was due to exposure to impetigo - she did not get it herself. It was really bad. In a true exacerbation, the seperation anxiety is extreme, her handwriting goes wacky, and her skin color seems to change. She looks like a deer in the headlights all the time & stops eating - especially sugar, or whatever her current OCD is focusing. She loses her natural independence. It's hard to write about these times - it's so bad, there are so many things to list. There is really no mistaking it. It rocks our world - we consider quitting our jobs, we begin to imagine the worst, we feel like we are standing over a dark pit. There is little laughter in our home. This contrasts dramatically with who Meg really is - a wild, joyful, funny, smart, athletic kid - who can drive you crazy sometimes with her energy and curiosity (and sometimes freshness - she is 8 and is starting to know it ALL), but really in a wonderful way.

 

We also seem to get very small episodes of a week or so, from something else. They are only a 2-4 on a scale of 1-10, whereas an exacerbation is an 8-10. We had a recent 8 day episode which seems to now be ramping off. We just took the Zith back up to a full strength dose for 5 days. I have no idea if this was a mild episode or an exacerbation - but it seemed to hit like a storm, but never developed the scary part. We do use ERP therapy, and after nearly 2 years of practice now, is able to help herself a lot - at least during an episode. We'll see how it goes if she ever has another exacerbation - but in the last 2, she was able to use ERP to have a fairly normal life (not a really happy one, but at least she was participating), but with a lot of coaching from both parents and caregivers. We are very fortunate to have babysitters and teachers that are willing to participate in the ERP, so that this is both normalized and fairly consistent during her day. We teach a very simple version to others, focusing on whatever behavorial issue they are seeing that is hurting her ability to participate or causing her to panic. We are also very fortunate to have a team of doctors that are comfortable prescribing antibiotics and Prednisone. If we have another exacerbation that lasts more than 4 weeks, or have more than one a year, then we will seriously consider IVIG, and everyone is on board with this. We are working now to figure out if there is an underlying issue that might enable us to get IVIG covered, but have not been able to identify it as of now. Also, if she got 1 per year for some time, we'd also consider a next step.

 

For us, we feel like we need the addition of ERP therapy - we feel like her OCD is a little sticky and a little more is left over after each episode. Perhaps this is because our family history has vulnerability to both OCD & TS. Or perhaps she needs IVIG to really reset her system. Her exacerbations are so severe, that without ERP, she would literally lose months of her life - she has trouble getting out of the house, eating, playing with friends, school, etc. Basically, it is just impossible for her to face a day in an exacerbation with tools to deal with what is happening to her. At the worst, she literally would not get out of her bed. I remember weaping about how I could have a 6 year old that became so depressed in 3 days that I had to pick her up to dress her. Now, it makes her mad - but not so terrified that she stops in her tracks.

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Can you respond as to what this means specifically for you?

 

We charted our daughter on 11 variables each rated 0-9.

  • 1-3 there, but barely
  • 4-6 meant pronounced event but not constant
  • 7-9 meant huge impact, disabling or unable to function

These were:

  • separation anxiety
  • social anxiety
  • emotional lability
  • lashing out/hitting/biting
  • restrictive eating/skipping meals
  • contamination fears/hallucinations
  • demanding defiance
  • OCD measurement rituals
  • OCD repetitive questioning
  • large motion movement abnormality
  • illegible handwriting/fine motor tremor (includes dropping things/clumsiness)

An exacerbation would be a jump of +15 points (typically 2 or more items going from nothing to severe). I'm not sure our cut off is useful to anyone else, but it is what we used. The rise was over 3 days and lasted typically 4 weeks.

 

Buster

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my thoughts are a bit jumbled so i apologize if i don't make sense. and please don't be offended.

 

i think i distinguish an "exacerbation" as being a big blip in an otherwise healing road. i think i'd put that healing road at about 90% pre-pandas or more (of course, the pre-pandas qualification gets hard to quantify, esp if it's been a lot of time). if you don't really think you've reached somewhere around that and you feel you should be seeing some result, i might question if it's an exacerbation or not healing. of course, the million dollar question is always - is it exacerbation or saw-tooth healing! and as someone pointed out recently, healing takes time - so it is so difficult to determine.

 

my son first returned to 100% within about 3 days of a 30-day course of keflex. a bit - maybe a week or so - after the 30 days, he regressed. he went back on another 30-days of keflex and did see improvement but not as dramatic. i don't think i consider this an "exacerbation" - i consider it still the beginning of healing. after that 30-days, he was in a wierd limbo state of not terribly troubling but really not good. he kind of just hung out in that state - not too bad but not really improving. if he had downturned then and didn't improve much with abx, i still don't think i'd call it exacerbation, i'd think he wasn't on a good healing path.

 

about 6 weeks after the 2nd keflex we began our current homeopathic protocol which is similar in theory to long term abx. i really felt i saw slow, small improvements inching along. after about 12 weeks, we changed the remedies a little. around this time, he got the flu. many behaviors returned - general obnoxiousness, separation anxiety, repeating words, demanding, potty talk, tantrums. i consider this an exacerbation b/c it was a dramatic, marked difference in his general demeanor. he was negative on a culture, we used ibuprofen and some homeopathy, returned to his previous protocol. thankfully, it wasn't too severe and he is pulling out of it. it began early/mid Nov and is pretty much over - so about 6-8ish weeks. i say it wasn't too severe b/c although difficult, it wasn't a stoppage of our lives. he had trouble going to school one or two days but made it and was okay, whereas last year he refused to go the last 6 weeks of the year. he was obnoxious at a playdate but he could go.

 

one of the biggest things i notice in rating him is a level of reasonableness that is present or absent. through the fall, he was steadily improving in wild freak-outs and although would still get unreasonably upset, he was getting better with being present vs. whacked out.

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We have been dealing with PANDAS for about 3 years with my ds6, and about a year+ with my ds3.5. And then I've had it for decades.

 

For the first 2.5 years with my older ds, it was ONLY very distinct episodes associated with Strep that would turn on and off abruptly over about 2 weeks. One every several months. Even teachers, parents of other kids, etc. could see exactly the day it started and the day it ended, and he was symptom-free in between. Over the last few months, this pattern still holds, but we've added on more subtle things when he gets other, milder infections or when his best friends get strep. Those last anywhere between 1-4 days, I would say. Those don't have any true OCD, but we see a few tics and a lot of pretty severe moodiness and inattention, large pupils, purple under the eyes, a bunch of allergic skin symptoms, and serious hypersensory stuff. During longer episodes when he's actually gotten physically sick, we see more OCD, tics, etc. in addition to the above.

 

My ds3.5 still only has symptoms when he's actually been clearly sick with a bacterial infection (OCD, defiance, etc. - no tics but some verbal difficulties) and they go away completely with a usual course of antibiotics.

 

Over my life, I started out with distinct episodes as a child, then as a teen it was more continuous with waxing and waning for several years, and then in my 20's it was back to distinct episodes, which eventually became rare (even a few years between) and short, though apparently triggered by a wider variety of things.

 

 

 

 

We talk alot of about "exacerbations" with PANDAS. Can you respond as to what this means specifically for you? How long do they last - or do you ever even see a "break" from them?

My husband is so tired of the disorder that he is beginning to question PANDAS in the first place because our dd never seems to catch a break. If we get a break, it may be for about 3 days. I think we go through the "exacerbations" for so long because she's had this for 4 years.

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We charted our daughter on 11 variables each rated 0-9.
  • 1-3 there, but barely
  • 4-6 meant pronounced event but not constant
  • 7-9 meant huge impact, disabling or unable to function

 

 

wow - can you come live in my head so i'd be as organized and methodical? this is awesome, i'm going to now construct somethng like this for us. Thank you!

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