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h202

Does this sound like anxiety?

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Son is 6, went from being well-controlled adhd on medication, to one day in February we got a call from school that he was having a violent rage in class.  This continued for 2 months while we tried to figure out what was going on (we were having lots of other symptoms too, but school was the crisis), his strep antibodies were extremely high, we saw Dr. Murphy here in Florida, and we've been on antibiotics now for 2 months for suspected PANDAS.  The antibiotics took the edge off:  improved sleep, almost no rage, defiance, opposition or irritation at home, hyperactivity is greatly reduced (back to his *normal* adhd hyper levels!), etc.  

He was out of school for the last two months with a nanny, and things went very well.  Now it's summer, and it has not gone well.  

We visited my parents last week by plane.  DS has historically been the MOST chill relaxed kid ever.  Hyper and a bit over stimulated, but not stressed. Contrasted with our former son, he was in a panic the whole travel day, gripping my arm the whole time in a big stress, eyes wide with fear. This situation was so out of character and struck me as obvious anxiety, which is why we looked at the other issues (below) through that potential lens.  

When visiting my parents (whom he adores and knows very well), he was well behaved if things were calm.  But he got rude and unsocialized during group settings and new settings: dinner, going to a new restaurant, going into the city to visit his aunt (which he used to love), etc.  What does this look like?  We got to his aunt's house: "Hey little man! Hugs for your aunt!" Him: "grrrrr" and no eye contact. Her: "Can i at least have a hug?" Him: gives medium hug. Her: "I hear you guys had a fun day yesterday doing X.  Was it cool?" Him: "grrrr. I DON"T want to talk about it!" And this goes on for 30 painful seconds where he is rude, no eye contact and looks like he may want to swing punches.  Not my kid. Then 20 minutes later, aunt and son are alone and have a wonderful time catching up.  

We started (mornings only) camp this week. Monday and Tuesday we got calls that he was having the same issues he had at school:  When he was inside with the larger group of 15+ kids, he was unresponsive, rolling on the ground, pulling at kids' legs, hiding under the table. By the second day, they just had a counselor stay with him in the classroom while the other kids went and did the camp stuff because he was refusing to leave the room. In these situations, he does not appear angry, scared, frustrated, or malicious. He is almost emotionless.  He can't be talked to or engaged with. He may be pulling on other kids legs, but it has nothing to do with the other kids.  From research, it sounds very much like an ASD sensory meltdown.  Then the kids left and within a minute, he's back to normal.  I saw this over and over at school too.  

We also tried a "sensory" camp this week at one of those occupational therapy centers. There were 6 kids in his group (some SN, some NT with sensory challenges) and he LOVED it.  Came home a different kid that day - chatting and happy.  

Other anxiety-like things that are new since february: wanting to have someone playing with him ALL the time, lost his mind when we did the blood draw (took 3 trips, ativan, and 4 adults pinning him down), lost his mind when he got a cut out of fear of stitches, and then because angry and unsocialized when the bandaid came off days later because of the same fear, getting him to our playground takes arm-twisting because of his new fear of bees and spiders, lots of arguing about food - especially when it's something new. I'm sure there are others.  None of these are debilitating.  Other than the cut situation, none involved crying or major anger.   

All of this stuff EXCEPT the crazed behavior at school/camp is totally manageable and honestly well within the norm of other kids' behavior.  It's rude, but i can deal, and wouldn't medicate for this alone.  

But the school/camp behavior is untenable.  We need a solution, and that is likely medication.   The school/camp stuff is clearly tied to sensory issues.  But is it also tied to anxiety?  

Question for you:  Do you think this school/camp behavior sounds like anxiety?  How does anxiety tie into sensory?  And how do we medicate for this?  Different ADHD meds? SSRI?  Antipsychotics?  Everyone agrees behavior therapy won't help because he essentially disassociates during these freak outs.  

Anyone been there done that??  Every one of my specialists, and the schools, seem to have never seen anything like this.  

Edited by h202

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I can offer some of our experience, which sounds very similar to yours.

My DS was diagnosed with "regular OCD" at 6, so, yes, an anxiety disorder; his just happened to manifest in a hand-washing compulsion which he used as a coping behavior, particularly at transitions.  I found references to PANDAS at the time and knew my DS had been exposed to strep (though he didn't "catch" it, in the classic sense), but I couldn't get any of his caregivers to take me or PANDAS seriously at the time.  We got him some therapy and he more or less "bounced back" within a couple of months.

His second serious bout of anxiety and OCD hit at about 7.5, and this time it was accompanied by some other behaviors that looked similar to ADD and some ASD:  periods of detachment,  trouble focusing, lack of interest in peers' activities.  We had him assessed for Sensory Integration Disorder (SID) during this period, and like a lot of other things we've had him tested for over the years, the results came back "borderline."  IOW, he had some "tendencies," but he technically didn't qualify for the "label" because, in the end, his score wasn't high enough.  Again, all of this "cleared up," this time with therapy and a low-dose SSRI (Lexapro, at the time) within about 4-5 months.  Still picky about some sensory things (clothing labels, socks, shoes, etc.), but nothing we couldn't solve.

We didn't hit another seriously disruptive set of behaviors -- predominantly anxiety-driven -- for several more years, until my DS was 12.  That's when things went seriously off the rails.  Until we finally hit upon a PANDAS diagnosis and treatment, various doctors and psychiatrists labeled him with OCD, ADD, generalized anxiety disorder, bi-polar, Aspergers, ASD, PDD-NOS...you name it, someone had dropped the term into his file!  Ironically, it was the school psychologist who conducted the testing for his IEP, along with the social worker, who came back to us with those results and said yes, he had several "tendency points," but in mass, not enough of any one disorder marker to definitively indicate any single disorder.  All of this testing and labeling took place during his most disastrous PANDAS episode, and I agree that he could appear seriously wacky at times!

Fast forward to following successful PANDAS treatment, some time, some coaching and some more therapy, and ALL of those issues evaporated!  One doctor officially removed the "ASD" from his file, and another struck through the "PDD-NOS."  He continued/continues to "rev a little high," as I call it, i.e., contend with some anxiety, though on a non-clinical and manageable level.  But in terms of any attention or social deficits, there are none, and he's a "social rockstar" as compared to a lot of his fellow engineering students in his college program! :P

Long way of saying, yes, I think your DS's behavior at his day camp are likely anxiety related and PANDAS driven; he's having trouble maintaining himself in a group social situation in which he doesn't get to call many, if any, of the shots, and in which he's expected to conform, despite the noise that's going on inside his head.  We saw much of the same in our DS when he was in those situations/settings.  His seeming emotional detachment, I'm guessing, is his mind's way of "keeping it together," even though, inside, he may be screaming about how uncomfortable he truly feels in these moments.   I suspect that all of this will settle out over time as the inflammation in his brain backs down via PANDAS treatment.  In the meantime, I suppose you have a couple of options.  You could minimize those situations for him, or you could work with him and the camp to try and give him some strategies for managing his distress and the resulting "acting out" until his ability to maintain -- and even enjoy himself -- in those settings returns. 

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Thanks for your thorough response! Yes, we are very sure the behaviors are PANDAS driven (or something analogous) -- because there was such a sudden onset, and the rage/violence/dissociation were so incredibly out of character for him.  So we continue to actively treat the PANDAS. We had hoped antibiotics were doing the trick, because home life had been pretty flawless for the 6 weeks he was home from school with a nanny.  But the travel and camp i guess pushed his boundaries, and he's not as remedied as we had hoped.  We are going back to see Dr. Murphy, who, based on our last appointment, will likely recommend steroids for a month.  (We had tried a steroid burst at the time of diagnosis, and it worked well for a few days).  But i recognize it could take months for successful treatment - potentially years.  In the mean time, i have a kid who literally cannot attend school because he has these manic episodes.  I agree we can minimize camp and try some other activities instead.  (I don't think there's much we can work with the camp on -- as said, he is effectively dissociated in these sensory overload times. He's exceptionally well behaved elsewhere, and tightly follows rules.  His various therapists all agree that there are no tools you can give him in these moments where he loses it because his mind goes to a place where he can't access the tools).   There are other camps he's doing this summer that we know will be a much better fit, so he will attend those.  

But he needs to go to school in august!  He's an only child, my husband and i both work (and want to continue working), i'm not someone who would enjoy homeschooling (tho i would if i had to), we're not religious, and most importantly, this kid needs some regular socialization! The two months home with a nanny were super calm, but without too many details, it was very clear he needs to be in some kind of daily school setting with other kids.  Before we withdrew him from school (and before the PANDAS diagnosis), we tried a lot of things in school - including me spending 2 full weeks in the classroom with him.  Even then, i spent a lot of time diffusing him, dragging him out of the class, spending time alone with him, etc.  For those two months, one would barely say he was "in school", given how low his engagement was.  And that was with me -- his greatest expert -- making every accommodation we could.  Point of all this is: If he's going to be in school, we need to cure the pandas OR medicate.  

If the dissociation in school/camp is presumably anxiety based, what kinds of meds have worked best for PANDAS kids, and at what doses?  He is currently on 15mg adderall (which he's been on for 2 years for adhd, before the PANDAS) and we have added 2mg Intuniv (guanfacine) since the PANDAS diagnosis (which he probably needed for the adhd, even before the pandas).  I have read stuff about pandas kids in particular needing low doses of SSRIs?  I'm sure dr. murphy will go through all this with us, but it may be weeks or longer before we can see her, and our psychiatrist is pretty open to whatever we need to do now.  

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Yes, Dr. Murphy has actually written the definitive paper on PANDAS kids and SSRI's, advocating that lower doses are generally appropriate for them, if SSRIs are applied at all.  She'll know more about the "why's" behind that, but it's probably good advice for all kids, generally.

One of Dr. Murphy's former colleagues, Dr. Eric Storch (I believe he even co-authored that paper, or has co-authored other papers with Dr. Murphy) taught a session at an IOCDF (International Obsessive Compulsive Disorder Foundation) conference several years ago for therapists, psychs and other practitioners working with ASD patients.  Like you, I basically consider myself a "practitioner" in my son's care, and given his ASD presentation at the time, I decided to attend that session.  Interestingly, ALL of the practitioners in that session -- no exceptions -- reported that low-dose SSRI's were most effective for their ASD patients.  Now maybe many of these ASD-presenting folks were undiagnosed PANDAS, or maybe there's something about the brain chemistry that's a common denominator in both diagnoses, but I found that interest.

Another finding in the room that day was that Zoloft was an SSRI favored among the group, including Dr. Storch at the time, for kids.  Based on that session and some subsequent conversations I had with Dr. Storch, we tried low-dose Zoloft for my DS during that PANDAS episode.  Most PANDAS families start their kids at about 1/2 the typically prescribed dosage, so for the case of your young DS, that might be as low as 12.5 mg/day.  But because SSRI's take 4 to 6 weeks to become fully effective (inhibiting the uptake of serotonin for an adequate period that the brain registers the higher available levels), it can be a long road, going "low and slow."  Just a heads-up.  But it can be effective; it was for my DS, though we eventually titrated up to a dose of 75 mg./day for him (but he was older and presumably larger than your DS at the time, so I would think he'd likely metabolize it differently).

There are a few other "psych meds" that some of us have found help our kids during their healing, most of them used off-label.  We had a psych somewhat versed in both PANDAS and ASD who, given our son's presentation at the time, thought that lamigotrine (Lamictal) might be helpful for him as it is thought to help modulate brain glutamate.  Putting this drug in place marked a turning point in his behavior as it helped him calm down and react more rationally in uncomfortable situations, without dulling his personality or energy at all.  There have been a few other families on this forum who've implemented this med, as well; you can search for it and find those discussion threads.

Please note I'm no doctor; I'm just a parent like you who wanted the highest possible quality of life for my kid, despite this illness.  All of these meds can have significant side effects, and there are many -- here and elsewhere -- who would urge you to forego this kind of "Band-Aid"  and focus on the medical illness behind it and interventions effective for that.  And I recognize the merit of that.  But similar to you, I felt like there was an "ideal" and there was real life, and in real life, my kid had, to attend school, I had to work, and I wanted him to have some enjoyment and happiness even while he healed.

Also with respect to school, you might consider getting a 504 Plan?  This would grant your son some accommodations (like alternate activities that he perhaps would find more engaging?) and supports that might help him stay in the classroom without being disruptive.  If he needs more support than that, an IEP is also an option; it comes with more in-place supports.

Sorry you're going through this, but hopefully he'll heal some more between now and school, making it easier for him to return.

 

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On the "long, slow, road" of starting low and going slow, particularly on Zoloft, I would like to add that it is not always slow.  For other similar meds, there was a study up here in Canada, where they equipped patients with immediate (daily) feedback apps (or similar) once they started an SSRI (or similar med that could take many weeks to work), and they found that some patients had relatively quick notable response to the med (it must have been stastically significant, because they emphasized this as a conclusion.

Our own experience on 2.5mg of sertraline (Zoloft), we had a dramatic change at about 24 hours. (Yes, 2.5mg, that is not a typo).  I was plotting a certain measurable symptom, and it dive-bombed so dramatically at 24 hours, and so permanently afterwards, that it could not (as the attending physician felt) be reasonably ascribed to co-incidence.  After I did a bit of a calculation of just how unlikely coincidence was (the symptom had been sky-high for months, and we had months of measurements of it - we were quite desperate), the doctor admitted that it was "a really big co-incidence", and then eventually conceded that calling it coincidence was unreasonable.  But then he forgot that he conceded that when we talked about it months later, and still thought of it as an "amazing" co-incidence.

That doctor couldn't accept the idea that they could work fast, even when I argued that side effects can occur fast (which he accepted) - so why not call this a fast side effect?  I suspect that they could work fast on the sensistive 30+% that Murphy mentions in her paper.

All this to say, don't necessarily reject positive effects that happen quickly

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