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Please Help? Wrong or right in interim of therapy consult?!


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Dd6 has PANDAS/PANS, now documented by two different peds and a neurologist...this means basically whenever she gets an infection we see an overnight surge in existing symptoms, as well as neurological effects.

 

PANDAs/PANS can be somewhat controversial, but ultimately the treatment is primarily the same. You treat the behavior symptoms of OCD, Night TerrorS, severe ADHD, etc...

We have appointments scheduled, but in the meantime dd6 has strange noises. Specifically moving her tongue back and forth in a wa wa wa wa wub thing! It.drives.me.nuts!

I do recognize that it seems to release energy for her...but I also k ow this kid to be an extreme victim of habit!!! If I don't correct her now, I sincerely feel it will become ingrained. How can I correct without stigmatizing?!

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I would disagree strongly that ultimately the treatment for the symptoms is the same - it may be or it may not be.  It depends.  (We have been dealing with this for 2 yrs now.  Finally scheduled for IVIg soon.)

 

In this case, what may be tricky to figure out is whether the tongue sound thing is a compulsion (OCD) - could also be a tic - or whether it is fulfilling some sort of sensory need.  Or whether those angles are really different sides of the same coin.  If you correct her on this noise, does her anxiety level rise, and if so, does it stay within a manageable level or does the anxiety spiral out of control?  Just a question I'd ask myself.  If you are trying to figure out how to control compulsions, I'd recommend visiting a neuropsych experienced in treating OCD with CBT but be forewarned that real experts may be harder to find than one would think.

 

From what I understand, it is better to do CBT when not in a flare if the goal is to help control symptoms in a flare. Once your child is in a flare, it may be too hard to learn CBT.  The person treating with CBT would be the person to ask about correcting an undesirable compulsion.  I don't have suggestions except to understand that compulsions may be based on an illogical fear (or sense) that horrible things will happen if the child doesn't do the compulsion.  Compulsions are not quite the same thing as behavioral habits.

 

Tics are very similar to compulsions but my understanding is that the sensation is more physical in nature, like needing to scratch an itch.  I don't think they're really controllable through therapy.  I would wonder whether the tongue noise thing is really a tic rather than a compulsion.  There are supplements recommended for tics; off the top of my head, magnesium and especially NAC come to mind - lots to read on those.

 

The ultimate treatment would be getting the flares to stop in the first place, either by treating infection or by fixing the immune system (complicated).

Edited by wapiti
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What Wapiti said. If the noise is a tic, not a compulsion, correction will likely just draw attention to it, increase the anxiety, and either lead to an increase in the tic or possibly (really depends and I have never been able to pinpoint why this happens) migrate the tic to something different. But mostly, correction has been completely ineffective for my son with Tourette's, which I know is not exactly the same as PANDAS, but a tic is a tic and would, I think, behave the same way regardless.

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I would not try to correct her, but there are books and workbooks about OCD for kids, reading and working through some of those together may help empower her to address some of her own compulsions and they will give you an approach that is not stigmatizing. What to do when your Brain Gets Stuck is good one to start with.

 

If you think a compulsion or tic is irritating to you, just imagine how irritating it must be for her on a much more personal basis :( It made me so sad watching my son with his compulsions. His case is probably also PANS induced, fortunately we are in a remission period right now.

 

I second looking into supplementing with NAC, that is what the behavioral pediatrician recommended for ds.

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You wrote that their is an overnight surge in existing symptoms, when the bacteria returns.

Though does this surge, include the 'tongue noise'?

As this could indicate a 'tic', rather than OCD.

Where it is important to identify whether it is a tic or OCD?

 

With PANDAS, various 'oral tics' are quite common.

Where the tics are typically a response to stress.

So that it is a release of stress, rather than energy.

 

Rather than correct her?  What you could try?  Is to ask her to take a few 'deep breathes, and fully breathe out'?

As this could release the stress, that causes the 'tic'?

 

But with PANDAS, it is the Strep bacteria in the back of the throat. Which is the causative agent.

When the Strep bacteria regrow in the back of throat, their is a surge in the symptoms.

Then the symptoms will reduce, when the Strep bacteria is no longer in the back of throat.

 

But an important thing with PANDAS, is that it is 'progressive'?

So that their isn't a full recovery, from the 'surge in symptoms'.

Where each 'bout of Strep throat', leaves some 'damage'.

 

So that while you are writing about her current symptoms.

What I would highlight, is the need to prevent re-infection, as far as possible.

While Strep is a bacteria, and can be reduced with anti-biotics.

A practical approach to prevent a new outbreak of Strep is also needed?

 

Which would basically involve her own method of oral hygiene, that she continues through life.

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Similar to what geodob suggests, the slow breathing tool that our neuropsych taught ds involved breathing in for a count of 4 seconds and out for a count of 4, 4x.  It is a nice little tool for anxiety situations, and is easy to practice, but unfortunately our ds is not medically in a position to be able to utilize that.  In other words, his PANS is way too far gone right now.  Correction is virtually not possible (it can be tried, but the resulting increase in anxiety has been, shall we say, not worth it, and yes, there are compulsions that are annoying and downright embarrassing in public... actually when I try to correct, the compulsions increase).

 

As maize mentioned, there are lots of possible triggers for the immune system and those will depend on the individual (wish we were only dealing with strep!).  It might help to try to figure out triggers when you have a flare though sometimes it's impossible.

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My son does these things as an autistic stim. It's not quite the same thing, but sometimes a replacement behavior works--it acknowledges that the behavior serves a purpose (even if it's just pleasure or release of tension), but you just try to get them to do something less annoying.

 

If it's a tic or a compulsion, you may not want to go that route.

 

If it seems to be a release of tension, it might be worth a try.

 

If it upsets her to be asked, ignore my suggestion!!!

 

If she doesn't know why she does it, but she doesn't get emotional about it, maybe it would be okay to try a replacement? You could spin it off as variety, etc. 

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