out of sync, pandas, just right ocd -- thoughts?

[smartyjones]

so - i've been saying for some time that my son is doing quite well -- averaging a 2-3/week on Buster's chart meaning slight notice of a few pandas symptoms or one medium issue that may be troublesome not debilitating. this is down from numbers in the teens in early January.

 

he is in a private school but we've been going throught an IEP eval with the public b/c the psych suggested having him evaluated for an expressive language problem. i haven't had the final meeting yet, but he seems to have done very well in the eval - indicating there is no need for any services b/c he's well above grade level in learning. we were there on monday and as i was waiting, i picked up a copy of the out of sync child and was skimming it. his only sensory issue seems to have been extreme sound sensitivity, which he is not currently experiencing - so i've never really investigated sensory problems. while skimming it, saw something about thought processing being a sense that can be troubled, and thought it might be good for me to read.

 

yesterday, we had a terrible conference at school. we've been working on slowly adding time to the day to make full day. i knew things were not perfect but thought things were going fairly well. he says his days are "great" and tells stories with enthusiasm as to what's happening in the class. the teacher is frustrated - he's troublesome with the other kids - kind of a picking at them bothering, he is constantly getting up and off task of what he's supposed to be doing. basically - out of sync. out of sync with the kids, the teacher, the work - seemingly everything!

 

she doesn't believe it to be recent but his general pattern, not sure why she hadn't brought it up before b/c we're in good contact and they've been understanding, helpful, etc - but that's a different issue for another time.

 

i just began the book but recall seeing discussions of it here. does anyone have thoughts on out of sync and pandas? what are thoughts on out of sync vs/compared with just right ocd? i've stated many times that he doesn't seem to have complicated thougths with things - maybe that why - could it be a sensory issue vs. ocd thoughts?

 

i am reading the book but just wanted to ask for input. thanks.

[MomWithOCDSon]

The first thing that strikes me about your post is, " i've stated many times that he doesn't seem to have complicated thougths with things - maybe that why - could it be a sensory issue vs. ocd thoughts?" A light bulb just went off in my head with respect to our DS13, and I think you're on to something! Our DS doesn't seem to have "complicated thoughts" about a number of things, either, but then in other trains of thought, he can analyze the crap out of it! Maybe it is the sensory and the OCD sort of duking it out for dominance? And sometimes one wins, sometimes the other?

 

I read "The Out of Sync Child" several years ago upon the recommendation of a friend of mine who is also a teacher, well before our PANDAS dx but during the time that we had an OCD dx and felt like sensory issues were also at play, perhaps either exacerbated by or brought about by the OCD. Beginning very young and up until this day, DS13 would wear only one brand of socks, and tolerate one pair of shoes at a time until they were absolutely destroyed, and then finding another paid that he would deign to wear was always an adventure. He couldn't stand any tags in his clothing (that goodness tagless has become more of a norm now), nor would he tolerate pants with pockets that could bunch up (like Dockers); he won't wear jeans because they're too hard and stiff. He had recurrent ear infections as an infant and toddler, so we initially thought that his acute hearing sensitivity was the result of his hearing improving markedly following a tympanostomy and, finally, a lack of fluid in his ears that had previously muffled and distorted sound. But that sensitivity has continued as well.

 

We had DS evaluated for Sensory Integration Disorder (SID) when he was 8; the psychologist came back with the conclusion that, yes, he has SID, though none of it was "off the charts." He also displayed balance and small motor challenges as of the date of the evaluation. They recommended some physical and occupational therapy, which we put him through for a few months, but his overall sensory sensibilities did not appear to improve at all as a result. Maybe we were too quick to pull the plug, but the therapy seemed to make him more miserable than the SID; for him, it was just a part of who he was, and he didn't feel there was anything there that needed to be "fixed," even if his sensibilities did send me all over the universe in search of clothing he would actually wear!

 

As his OCD behaviors have continued and "morphed" to some extent with his physical, emotional and mental maturation over the years, and then we've found some relief through the PANDAS dx and an abx regimen, I have begun to think of the "out-of-sync" stuff as pretty emblematic of the "mixed bag" of behaviors that so many of these PANDAS kids present, including mine. In our IEP meeting, it was revealed that his testing with the school psychologist indicated a low-level autism-spectrum processing; that was the first we'd heard of that. But when you combine that "finding" with our personal experiences with him at home over the last 12 years, along with the psychiatrist uttering everything from "OCD" to "ADHD" to "bipolar" at various points in the 5 years he's known DS, you start to see that this basal ganglia inflammation, deficit of glutemate, a combination of those or even perhaps a host of other pieces of the puzzle too, bring all of these very general labels for various sets of behaviors to the fore.

 

The "disconnect" between what your son reports of his day (enthusiasm, positive stories) and the way the teacher reports it is interesting; what does your son say if/when you confront him with discrepancies between what he thinks happened and how his teacher sees it? We sort of have the opposite going on: DS will report that he was disruptive at this point in time, unfocused at that one, talked out of turn here, poked fun at a kid there, but when we consult with the teacher, she/he inevitably reports that DS is doing well, fits right in with his peers in terms of his behavior, and is not disruptive in unequal measure to the rest of the class. So I figured it was a version of OCD scrupulosity that was kicking in with DS's perception of his day, and we just have to disabusive him of his out-of-sync level of concern in this regard. Maybe your DS needs prompting in the opposite direction -- make him more aware of how his behavior is perceived?

 

Or, there's always the possibility, too, that the teacher's perceptions are somewhat "out-of-sync" on there own. Has she, perhaps, reached a saturation point and just doesn't have the personal resources to manage your son's (or maybe other kids in the class, too) more eccentric bits of behavior? I know teachers start to get burnt out by about spring sometimes, and their tolerance levels overall can hit the proverbial wall.

[dcmom]

I haven't read the out of sync child- but just want to comment (add confusion) on sensory issues:

 

both of my dd's seem to manifest sensory issues in different ways. For both, the sensory issues started when pandas started. And for both, the sensory issues seemed to trigger, or be wrapped in ocd.

 

DD, age 6, started with tags, socks, shoes, no jeans, only soft clothes, etc. Some stuff, I believe, really became uncomfortable. But, then her ocd focused on it, and she obsessed that nothing fit. Now that has calmed into more of a just right ocd, surrounding her sensory issues with clothes. I truly believe they are not comfortable- but then she also obsesses on it.

 

DD, age 9, became over sensitized to activity in her tummy (her ped gave me this aha moment), therefore she complained of stomachaches, but this then was surrounded with the ocd of she was afraid to go out, afraid of getting sick, etc. I think she also became sensitized emotionally- and if anyone (me, dad, kids at school) say boo to her, she thinks they are being mean.

 

I believe my kids have mild sensory issues, that are made much worse when their ocd focuses on it. Does this make sense?

 

smarty- could your son be exhibiting signs of adhd? I know that can come with pandas, and could be the reason he can't sit still, etc. I think it is really good news that he is happy and enthusiastic at school. I would want to make sure you and the teacher can channel his energy, rather than squash it. So much depends on the teacher. I would explain to her that pandas can cause adhd, and you are exploring that, but that it should NOT be looked at or treated like a behavoir issue right now. She NEEDS to have the patience to work with him.... Is there a good counselor at the school, or do you see a therapist with him? Oh and btw, knowing you have been having issues- that is SO annoying that she waits to spring this on you at a conference. This is something where she should be communicating with you daily! (Just thinking, maybe you could start some sort of reward program for him, that you work in conjunction with the teacher, focusing on good behavoir?)

[Megs_Mom]

Our daughter has Sensory Integration Disorder that is only serious when in a PANDAS exacerbation. Sensory issues are the first to arise & the last to go. They often seem to add to the OCD and reinforce it. Through a lot of work in therapy, we can clearly specify which issue is occuring 90% of the time. As an example, we have had times when clothing is a sensory issue (feels wrong, bothering her, etc) and we use Habituation techniques (I can send you an email with these, too long to write here). We also accomodate to some degree, by using socks, shoes, clothing - that is less likely to impact her. While sensory issues do build for her during an exacerbation, they don't spiral out of control. They cause frustration, but not panic or rage. They seem more logical and solvable.

 

However, if the issue is contamination OCD (or perhaps in your case, "just right OCD") then we use ERP therapy to discuss and work on the issue. Accomodation on a contamination issue only brings very short term relief & it for us, it then builds very quickly to panic and anger - within days, she will be unable to touch or wear anything in her wardrobe. Also, a sensory issue can trigger her OCD - so a really loud sound, sends her into a panic, and then she is sure she needs to leave the area or she will get sick. This is a good example of a sensory trigger, with a sensory reaction leading to an OCD thought. Just to make it really complicated!

 

And of course, either way, we start looking for what is causing the PANDAS episode and trying to ensure that we medically treat if warranted.

 

Either way, both the SID therapy and the ERP have a lot in common - they are both about learning to process a feeling that is "wrong" and to adapt or habituation to being able to tolerate that feeling.

[LNN]

DC Mom taught me the term "GUTI" - get used to it - that we've been teaching my daughter, (potential for PANDAS but nothing concrete) habituating her to underwear. I have the "Out of Synch Child" on the night stand, but haven't gotten very far yet.

 

We too sometimes have "out of synch" conferences where I walk in thinking, based on my son's reports and things I see at home, "this is going to be great" - only to go home all deflated and confused...

 

Like DC Mom , I wondered if the teacher is seeing PANDAS related ADD or OCD (I posted last week about how my son's OCD made him think someone was staring at him and he couldn't get his work done because he kept looking around the room but the teacher saw it as ADD - they can look so similar). I also wondered if there's some choreiform movements that are being mistaken for fidgetiness. It's not just piano-playing fingers that show up. Lots of us have gone to see a PANDAS doc and had them show us tics or movements we never recognized.

 

So my gut reaction is that you should keep reading Out of Synch to help you understand the sensory aspects, but that you're probably dealing with the sensory manifestation of PANDAS rather than a separate "issue" or diagnosis. The odd interpersonal episodes could also be PANDAS related. if not, they'd need to be dealt with differently, so it sounds like more digging is needed.

 

Not sure if your doctor is local or one of the experts, but if practical, it may be worth arranging an office visit and exam to make sure things are as low level as you've been thinking they are. Not trying to say they aren't. But there's a disconnect somewhere between home and school and your son's perceptions. Sounds like you need some current medical info for this puzzle to make sense. I've had lots of times where something isn't quite right and weeks later I come to find out there was a medical reason behind things that didn't make sense at the time.

[thereishope]

In regards to the IEP eval...each district is different and , in my opinion, aren't always fair. In mine, you either have to be very bad off with a disorder or if you are "so, so" with having issues, it then comes into play what your other scores are.

 

Yours went for an expressive speech eval. However, they probably tested motor skills, other speech skills, etc. If your child has an expressive speech disorder but it is not severe, the other high scores disqualify him from services. So, just because he doesn't qualify through the district doesn't mean he doesn't need therapy. If you feel he needs help and your insurance covers it or you can afford to pay it on your own, get him re-evaluated through the local children's hospital. I have one child with a severe speech disorder (not expressive) that has an IEP for it and receives services. I have another that could use speech therapy but it's not bad enough to qualify for services. My insurance doesn't cover speech, I can't afford speech, so he isn't getting help. It's not bad and I hope over time he will teach himself the correct way with me guiding him. He outgrew some other speech problems so hopefully, the remaining will follow.

 

As for just right OCD, oh boy I can write loads about that. That was also one of his residual OCD habits that we really had to work at. I will reread your post later and see if I can provide some suggestions.

 

My son had a lot of OCD.

[dcmom]

LLM- I have been forbidden to say the G- word in Julia' room! He he he. (but, she is doing well- she now usually makes herself just get used to stuff).

[MomWithOCDSon]

DC Mom taught me the term "GUTI" - get used to it - that we've been teaching my daughter, (potential for PANDAS but nothing concrete) habituating her to underwear.

 

GUTI! I love it! So much more ring to it than our old stand-by: "Just move on!" And this is "habituation" in the cold-turkey sense! I love expanding the vocabulary . . . . !

[LNN]

LLM- I have been forbidden to say the G- word in Julia' room! He he he. (but, she is doing well- she now usually makes herself just get used to stuff).

 

A few weeks ago, my 28 yo niece (who lives with us) walked by my daughter's room and heard her arguing with herself. She was standing in front of her underwear drawer (unaware she was being watched) and arguing with the wet fairy, saying "I can so wear underwear. I will too get used to it. Stop trying to ruin my day!"

 

Now, when my niece first moved in with us last summer, she might have been alarmed that my 5 yo was talking to herself like some schizophrenic. But after a year of living in our house, she came downstairs with a smile on her face and said 'You'll never guess what an awesome thing I just heard!" Don't you just love when they internalize, even when some days you feel like all you're doing is being the bad guy/nag?

[marilina]

MomWithOCDSon

you say "deficit of glutamate"......

I read a lot about glutamate as excitotoxin, and about the balance gaba / glutamate, very important for health. also found that children with autism have rather too much glutamate receptors .....

is there something to read about PANDAS-glutamate relation?

thanks

[MomWithOCDSon]

MomWithOCDSon

you say "deficit of glutamate"......

I read a lot about glutamate as excitotoxin, and about the balance gaba / glutamate, very important for health. also found that children with autism have rather too much glutamate receptors .....

is there something to read about PANDAS-glutamate relation?

thanks

No, actually, the glutamate issue is with respect to OCD, plus I mispoke; it's not a "deficit" of glutamate, but rather a failure to modulate the amount of it overall in the brain. There was a study done at, I believe, Wayne State, in which a series of MRIs performed on OCD kids versus non-OCD kids revealed that OCD kids had higher levels of glutamate active in their brains, and the thought was that these higher levels attributed to an OCD person's greater challenge in "switching off" thoughts rather than perseverating on them and/or circling back to them over and over again. I saw the study referenced and the chief researcher interviewed on a "Dateline" episode about kids with OCD.

 

Then, more recently, one of the other parents here introduced me to the fact that there is a trial currently going on involving a drug called riluzole that might help the modulation.

 

Here are a couple of links I found on the topic:

 

Glutamate-OCD Study

 

"http://www.neuropharmacology.com/rilutek.htm

[trggirl]

I thought CamKinase II activated glutamate? Had anyone else read that?

 

 

Edited: Oops, it may have been that it acted at glutamate receptors. I'm not sure. But the Camk definitely had some affect on glutamate.

[kimballot]

Hi - I think I posted something about the out of sync child last week. Ihave a son who is 13 years old, has had PANDAS issues since he was a baby and he has had sensory issues with exacerbations. At first it was baffling to me, as an OT, because I did not understand why his sensory system changed with each sinus infection - but it is a bit clearer to me now. As I sorted through this over the years, I have adopted the "barrel" model of understanding my son's function (often used by allergists). If you think of a big rain barrel that is balancing (kind of like "don't spill the beans game), then any one bean you put in does not disrupt the balance and the you really do not know how full the barrel is. However, if the barrel is full and you add that one last bean... whamo. My son's nervous system is like this. If he is healthy, he is able to take in a variety of sensory input through the day, like being in a room with lots of stimulation or having a kid bang into him on the bus, and be just fine, because it only fills the barrel up a little bit. However, the sympathetic nervous system tends to put a stimulation from different systems together and also tends to store sensory information for a period of time. So, if he wakes up and his allergies are acting up (barrel partially filled), and he has an infection (barrel partially filled), and the seams of his socks are rubbing on his feet (barrel partially filled)... then when something small happens- like a kid bangs into him on the bus - then whamo - rage or OCD or some other meltdown kicks in.

 

Using a sensory "diet" helped us to get through the day when my son had exacerbations when he was younger. The idea is to give calming sensory input to "empty" the barrel. Calming sensory input tends to be firm touch, deep pressure, neutral warmth, and resistive muscle movements. The out of sync child is a great read for younger children, and Diana Henry's work (tools for tots, tools for schools and tools for teens - http://www.ateachabout.com/) also give some good ideas. When my son was young we used a weighted vest (which has been shown to increase attention and reduce extraneous behaviors - http://www.kidsot.com/kidsotweb_files/weightedvests.pdf) to get through dinner and to get him through table-top activities in the classroom. We also did a brushing protocol, on occasion, but I am not a big fan of that in general and really have not seen any research to back this up.

 

Now that he is older, he is much less variable in his response, though he does get wound up. I sometimes recommend warm baths, pull-ups, electric blankets, and removing himself from the stimulation when this happens, and I try to get him to do some gross motor activity each day, though this is difficult in the winter.

Edited February 16, 2011 by kimballot

[kimballot]

.

[MomWithOCDSon]

Using a sensory "diet" helped us to get through the day when my son had exacerbations when he was younger. The idea is to give calming sensory input to "empty" the barrel. Calming sensory input tends to be firm touch, deep pressure, neutral warmth, and resistive muscle movements. The out of sync child is a great read for younger children, and Diana Henry's work (tools for tots, tools for schools and tools for teens - http://www.ateachabout.com/) also give some good ideas. When my son was young we used a weighted vest (which has been shown to increase attention and reduce extraneous behaviors - http://www.kidsot.com/kidsotweb_files/weightedvests.pdf) to get through dinner and to get him through table-top activities in the classroom. We also did a brushing protocol, on occasion, but I am not a big fan of that in general and really have not seen any research to back this up.

I will echo that our DS has always enjoyed firm pressure, predominantly on his torso; when he was younger, he would climb between the couch cushions and ask us to sit on him, just so he could get the pressure. Now, when he's transitioning to a stressful activity (like homework) or getting home from a long day at school, he'll ask for a hug . . . which he always gets! Who could turn down a reasonable request like that!

 

He also founds a warm shower calming these days, and swimming is a favorite athletic activity, mostly because he likes the feel and the pressure of the water surrounding him.

 

Thanks for the links and reading suggestions, Kim. I would be great to be able to continue to "update" the sensory helpers as our kids get older and a hug from Mom in front of the peer group isn't exactly "cool" anymore.