Rollercoaster ride

[wornoutmom]

I keep reading about kids having positive improvement with abx or IVIG and wondering what this recovery process really looks like for people? Maybe this is what "sawtooth" means (though I'm really starting to hate that word), but my son's behavior/emotions are all over the place. A week ago he had the best, most NORMAL day I've seen in - well I don't know when. It was like getting a glimpse at who he really is behind this damn disorder. Two days later I'm pulled off the side of the highway while he's screaming, kicking, thrashing, breaking my dashboard because he doesn't understand why he's taking Biaxin and has more than one doctor. Scary stuff. Then a seeming return to his PANDAS "baseline" - whiny, worried, dependent or irritable, bossy, mean. Saturday was "ok" - no major issues. Then Sun. all ###### breaks loose again around doing homework and the exorcist is back, not once, but twice that day. He's assaultive, and crazed and twitching like he's crawling out of his skin. The second episode, he actually has a realization that it's starting and cries "this can't be happening again, I can't do this again" but is helpless to stop it. Horrible horrible day. Then yesterday he goes to school, manages all the tests and things that had triggered all the fear the day before, and comes home feeling proud and happy. He actually told me last night that he wants to meet other kids with PANDAS and/or OCD - that it would be relieving. I keep going back to what Dr L said to me in Feb about PANDAS kids not having "good" days. Maybe my definition of "good" is skewed because of what "bad" looks like - but really, he does seem to have some good days here and there where it's either not bothering him, he's distracted enough or just has enough energy to fight through all the brain noise. Does anyone else see this kind of swing - not related to change in meds?

[MomWithOCDSon]

Unfortunately, the answer is "yes," in our experience.

 

I'm beginning to think the real goal is to have the "good" days increase in terms of a stretch of them in a row, while the "bad" days recede further and further, hopefully eventually becoming truly rare.

 

We still think we are nearing the edge of the woods in our house, after almost 5.5 months on abx, but we still have "bad" days . . . they're just fewer and farther in between. I keep a journal and track even the more subtle of his attitudes and behaviors, in part so that I can go back and read through on a "bad" day and see that, despite this moment in time, he really does continue to improve because his last "bad" day was more than 2 weeks ago, and the "bad" day before that was another 10 days prior to that, and on and on.

 

It's frustrating and demoralizing, too, because you begin to think maybe you've got this thing figured out . . . maybe this time your interventions are working. And then the "bad" day hits and you start questioning yourself and your doctors again.

 

I can only say that, despite the roller-coaster/saw-toothed ride that we're taking, if the intervention is working as it should, over the long term, there should be demonstrable improvements -- longer and longer stretches of "good" days that will boost his confidence and yours. Hang in there!

[dcmom]

We definitely have had sawtoothed recoveries for both girls. They will have bad days, however they typically don't revert back to their worst time- it is more like someone else said "two steps forward, one step back" not two steps back- if you know what I mean. I have found it really important to look at the trend of the week, and not an individual day. If the week to week trend is positive- you are going in the right direction.

 

If you are a really organized, detail oriented, type- you may want to try Buster's charting system. This would give you a more tangible way to chart improvement over time.

 

That being said- if things really don't seem to be improving- you want to know. My dd has seen some bumps in her recovery due to strep exposure, loosing a tooth- any immune challenge. These would be short 3-5 days- but they were bumps in the road to recovery- not sawtooth progress.

 

I hope this makes some sense....

[Fixit]

Unfortunately, the answer is "yes," in our experience.

 

I'm beginning to think the real goal is to have the "good" days increase in terms of a stretch of them in a row, while the "bad" days recede further and further, hopefully eventually becoming truly rare.

 

We still think we are nearing the edge of the woods in our house, after almost 5.5 months on abx, but we still have "bad" days . . . they're just fewer and farther in between. I keep a journal and track even the more subtle of his attitudes and behaviors, in part so that I can go back and read through on a "bad" day and see that, despite this moment in time, he really does continue to improve because his last "bad" day was more than 2 weeks ago, and the "bad" day before that was another 10 days prior to that, and on and on.

 

It's frustrating and demoralizing, too, because you begin to think maybe you've got this thing figured out . . . maybe this time your interventions are working. And then the "bad" day hits and you start questioning yourself and your doctors again.

 

I can only say that, despite the roller-coaster/saw-toothed ride that we're taking, if the intervention is working as it should, over the long term, there should be demonstrable improvements -- longer and longer stretches of "good" days that will boost his confidence and yours. Hang in there!

 

thanks for writing that up??

 

wornout....does your son have allergies?......in ga ours are out the roof...however, if it rains and cleans the air and i might be noticing a 24 hour lag to rise and fall in symptons

[airial95]

Wornout,

 

We've seen the same thing - last week we had one of the best weeks in forever - until Friday - he was a terror at school, was banging his head on the headboard at bedtime - just a mess. He had a bit of a rough weekend too, but it was still better than Friday.

 

I've personalized Buster's charting system, and set it up to track the whole year. I have day care also "scoring" him so I have a tangible "score" to track his good and bad days. What I've seen over the last few weeks is that his bad days are coming farther and farther apart, and each bad day is somewhat better than the last bad day we had. That helps us alot because even when we're at our most frustrated, we can still see some tangible progress.

 

What we've noticed most about his recovery, is that it's inconsistent as to which behaviors improve day to day. On days when his anger and agression seeming in check, his spatial anxieties can be through the roof. On days when the OCD seems under control, it's the ADHD that's off the charts. What we've noticed though, is that on his good days, it seems that we're only dealing with 1 challenging "behavior" at a time.

 

I'd be happy to share my excel sheet with you, and talk you through how to personalize it for your child if you'd like...It took me a couple of hours to set up, but updating it only takes minutes a day. I've also used it to prepare detailed reports for our Dr. to help him identify how best to renew our abx. (we're fortunate to have a ped who knows about and somewhat understands PANDAS and has no problems with extended abx as long as they're working!)

 

I hope this helps - PM me with your email address if you'd like me to pass along the excel sheet - it's sort of large and I don't know how to post it here.

[kcdc3]

Wornout....how many days have you been on the Biaxin?

[wornoutmom]

Yesterday was day 16 of Biaxin. I spoke with dr T yesterday who advised us to take him off it for a little while and see what happens. If things get worse consistently, we'll know that it was helping a bit. I can say that since going on anitbiotics consistently in January (Ominicef for 7 weeks then 2 weeks of Biaxin), there are bigger stretches between the "exorcist" episodes. In the first few weeks of January this was daily, sometimes twice a day. I really thought we were bound for the hospital because I didn't know how long my dh and I could continue to live like that. We are now seeing longer stretches in between - sometimes up to 7-10 days. Its just that when things go south it is SO extreme and his inhibition about getting physical with me is less each time. And the pattern of episode, then sick 3-4 days later is gone. Perhaps being on the antibiotic, we aren't seeing so much of the physical illness side? My gut feeling is that the abx are keeping things somewhat in check regarding all the intrusive obsesive thoughts, but not "enough" to prevent these breakthroughs. It's like the worry thoughts seem to get louder or cycled or stuck at some point and it becomes too much and he explodes. I just keep feeling like this should be some kind of linear recovery (like when you are sick and start to feel better gradually each day) and it's not. He even has asked me why somedays his brain feels fine and others it does not. I don't have much of an answer for him.

[LNN]

prior to plasmapheresis, when my son would go into an episode, his symptoms would chart like a bell curve - First Symptom 1 (a tic), then add symptom 2, then add 3, 4 and 5. As he started to recover, symptom 5 would disappear first, then 4, then 3, then 2 then symptom 1. So in our case, a tic was always the leading symptom and it was always the last to go. Others have refereed to this as "healing in reverse".

 

After he was healing from pheresis, we had explosions of symptoms, but it wasn't the bell curve we saw in an episode. It was more like fireworks...a flash of symptom 1 for 36 hours then quiet. Then a flash of symptom 4 for a few hours, then quiet, then a burst of symptom 2 or 5...

 

Since last summer's pheresis and prophylactic abx, he's only been sick once. But he's had several episodes due to exposure to others who were sick. We no longer see a predictable pattern of symptoms. Maybe because he himself isn't the one who's sick. Don't know.

 

Maybe what you're seeing is a sign of healing - or maybe it's due to exposure to someone who's sick?

 

Also, we too use a variation of Buster's charting system. But if anyone has ideas on how to illustrate the whole family's health in correlation to Pandas DS symptoms, I'd love ideas. I know my daughter's bouts of sinus and impetigo infections correlate to his exacerbations, and I have also had several sinus infections this winter. How do you illustrate the overlay of how the whole family effects the system?

[thereishope]

This time of year doesn't help matters. With the seasons changing, there is so much illness our kids are exposed to. That can cause things to worsen as well.

 

With my son, he would have time of dramatic setbacks, but they seemed to last only for about 3 days, then they would level off and improve.

[KaraM]

I"m not sure yet whether my 7 year old daughter has PANDAS, we are still in the diagnosing stage. But we definitely experience this roller coaster as well; ith really bad days and then "relatively" good days. We rank each day on a scale of 0 (no fear) to 5 (including rages, fits, tantrums). If you look at her chart it is very much a roller coaster ride (although we very rarely get below a 2). Last week she had 4 or 5 days of 2's, then BOOM, a screaming tantrum in which she also pushed and hit me - all because I touched her brother's contaminated Ipod then touched a book of hers. For the rest of the day, I was contaminated and could not touch her, prepare her meals or anything. It took me so off guard. Although I think I did a decent job of keeping my cool, I had a very difficult time controlling my own emotions. I was devastated.

 

Can you tell more about Dr. L's comments about PANDAS kids not having good days?

 

Thanks,

Kara

 

 

 

I keep reading about kids having positive improvement with abx or IVIG and wondering what this recovery process really looks like for people? Maybe this is what "sawtooth" means (though I'm really starting to hate that word), but my son's behavior/emotions are all over the place. A week ago he had the best, most NORMAL day I've seen in - well I don't know when. It was like getting a glimpse at who he really is behind this damn disorder. Two days later I'm pulled off the side of the highway while he's screaming, kicking, thrashing, breaking my dashboard because he doesn't understand why he's taking Biaxin and has more than one doctor. Scary stuff. Then a seeming return to his PANDAS "baseline" - whiny, worried, dependent or irritable, bossy, mean. Saturday was "ok" - no major issues. Then Sun. all ###### breaks loose again around doing homework and the exorcist is back, not once, but twice that day. He's assaultive, and crazed and twitching like he's crawling out of his skin. The second episode, he actually has a realization that it's starting and cries "this can't be happening again, I can't do this again" but is helpless to stop it. Horrible horrible day. Then yesterday he goes to school, manages all the tests and things that had triggered all the fear the day before, and comes home feeling proud and happy. He actually told me last night that he wants to meet other kids with PANDAS and/or OCD - that it would be relieving. I keep going back to what Dr L said to me in Feb about PANDAS kids not having "good" days. Maybe my definition of "good" is skewed because of what "bad" looks like - but really, he does seem to have some good days here and there where it's either not bothering him, he's distracted enough or just has enough energy to fight through all the brain noise. Does anyone else see this kind of swing - not related to change in meds?

[wornoutmom]

We consulted with Dr L in Feb, and she did not think my son had PANDAS. She made a comment that kids with PANDAS don't seem to have good days - just bad days or really bad days. We've since had a second opinion with diagnosis of PANDAS/PITANDS, and a PK PETscan that confirmed inflammation in the brain. But on my off days, her comment rings in my head, making me doubt what I am looking at.

 

 

 

I"m not sure yet whether my 7 year old daughter has PANDAS, we are still in the diagnosing stage. But we definitely experience this roller coaster as well; ith really bad days and then "relatively" good days. We rank each day on a scale of 0 (no fear) to 5 (including rages, fits, tantrums). If you look at her chart it is very much a roller coaster ride (although we very rarely get below a 2). Last week she had 4 or 5 days of 2's, then BOOM, a screaming tantrum in which she also pushed and hit me - all because I touched her brother's contaminated Ipod then touched a book of hers. For the rest of the day, I was contaminated and could not touch her, prepare her meals or anything. It took me so off guard. Although I think I did a decent job of keeping my cool, I had a very difficult time controlling my own emotions. I was devastated.

 

Can you tell more about Dr. L's comments about PANDAS kids not having good days?

 

Thanks,

Kara

 

 

 

I keep reading about kids having positive improvement with abx or IVIG and wondering what this recovery process really looks like for people? Maybe this is what "sawtooth" means (though I'm really starting to hate that word), but my son's behavior/emotions are all over the place. A week ago he had the best, most NORMAL day I've seen in - well I don't know when. It was like getting a glimpse at who he really is behind this damn disorder. Two days later I'm pulled off the side of the highway while he's screaming, kicking, thrashing, breaking my dashboard because he doesn't understand why he's taking Biaxin and has more than one doctor. Scary stuff. Then a seeming return to his PANDAS "baseline" - whiny, worried, dependent or irritable, bossy, mean. Saturday was "ok" - no major issues. Then Sun. all ###### breaks loose again around doing homework and the exorcist is back, not once, but twice that day. He's assaultive, and crazed and twitching like he's crawling out of his skin. The second episode, he actually has a realization that it's starting and cries "this can't be happening again, I can't do this again" but is helpless to stop it. Horrible horrible day. Then yesterday he goes to school, manages all the tests and things that had triggered all the fear the day before, and comes home feeling proud and happy. He actually told me last night that he wants to meet other kids with PANDAS and/or OCD - that it would be relieving. I keep going back to what Dr L said to me in Feb about PANDAS kids not having "good" days. Maybe my definition of "good" is skewed because of what "bad" looks like - but really, he does seem to have some good days here and there where it's either not bothering him, he's distracted enough or just has enough energy to fight through all the brain noise. Does anyone else see this kind of swing - not related to change in meds?

[LNN]

We consulted with Dr L in Feb, and she did not think my son had PANDAS. She made a comment that kids with PANDAS don't seem to have good days - just bad days or really bad days. We've since had a second opinion with diagnosis of PANDAS/PITANDS, and a PK PETscan that confirmed inflammation in the brain. But on my off days, her comment rings in my head, making me doubt what I am looking at.

 

During an exacerbation, my son never had "good days" - clearly nothing that resembled pre-pandas days. But he did/does have good days in between exacerbations and at the end of an exacerbation, as symptoms start to have longer periods in between (e.g. when a tic might only appear once every three hours instead of every 3 minutes or you might go a whole day without a melt down) those relatively "good" days do start to give you hope.

 

I guess I'd rephrase it by saying they don't have "symptomless" days mixed in in the middle of an exacerbation. But "good" becomes a relative term when you're in the middle of insanity.

[momto2pandas]

Your last question is an interesting one. I made up a big Excel file for all of us so that I could actually import it all into a statistical analysis package and look at the patterns! Have only been doing it for a few weeks so far, so nothing much to report yet.

 

It's interesting, though. I just picked up some of our medical records for the last 4 years and filed everything by date instead of by person, and it was striking. I remembered things that I hadn't remembered in a long time. For example, I had this really annoying eye twitch that lasted a few weeks a few years ago, and I had no idea what it was all about. It had never happened before, but all of a sudden my eye was twitching like crazy. Interestingly, it was happening exactly when both of my boys and my husband all had Strep! I hadn't put that together at the time. Lots of other "aha" moments in there as well.

 

 

 

 

prior to plasmapheresis, when my son would go into an episode, his symptoms would chart like a bell curve - First Symptom 1 (a tic), then add symptom 2, then add 3, 4 and 5. As he started to recover, symptom 5 would disappear first, then 4, then 3, then 2 then symptom 1. So in our case, a tic was always the leading symptom and it was always the last to go. Others have refereed to this as "healing in reverse".

 

After he was healing from pheresis, we had explosions of symptoms, but it wasn't the bell curve we saw in an episode. It was more like fireworks...a flash of symptom 1 for 36 hours then quiet. Then a flash of symptom 4 for a few hours, then quiet, then a burst of symptom 2 or 5...

 

Since last summer's pheresis and prophylactic abx, he's only been sick once. But he's had several episodes due to exposure to others who were sick. We no longer see a predictable pattern of symptoms. Maybe because he himself isn't the one who's sick. Don't know.

 

Maybe what you're seeing is a sign of healing - or maybe it's due to exposure to someone who's sick?

 

Also, we too use a variation of Buster's charting system. But if anyone has ideas on how to illustrate the whole family's health in correlation to Pandas DS symptoms, I'd love ideas. I know my daughter's bouts of sinus and impetigo infections correlate to his exacerbations, and I have also had several sinus infections this winter. How do you illustrate the overlay of how the whole family effects the system?