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Hitman3161

Are tics a prerequisite for PANDAS?

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Hey all,

Just a quick question regarding the nature and scope of tic behaviours, and their necessity to making a diagnosis of PANS/PANDAS.

With regards to possible movement disorder, over the years I've exhibited a few embarrassing behaviours (mostly self injurious) such as hand biting and clenching the muscles in the throat. I've heard that the distinction between stereotype behaviours and tics are that the former are more habit forming and suppressible, and the latter have the quality of a preminotory urge and are only temporarily suppressible.

Another troubling episodic symptom I've experienced (and quite frightening) particularly in stressful times, is that I will feel this wavy sensation behind my eyes (in my head) which will result in an unfocused staring spell (trance) lasting several seconds. I am conscious whilst this occurs, although inattentive, with the exclusion of sight from immediate awareness and it's not suppressible. Could this constitute a tic by definition? Is this inclusive to PANS and has anyone else experienced similar?

Apart from this I can't remember ever displaying conventional motor or phonic tics, I just wondered if they were absolutely necessary in diagnosis?

 

Hopefully pursuing treatment soon :)

 

 

 

Edited by Hitman3161

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No.  A person could have OCD instead of, or in addition to, tics.

I'm not knowledgable about tic movements.  What you are describing with the staring spell sounds more like a seizure??

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Hi Jan,

Thank you for your reply. I can't say tics are a defining feature of my presentation, but there's definitely motoric hyperactivity (restlessness). I'm glad this doesn't rule out the diagnosis though.

I only wondered about the possibility of a 'staring tic' if that makes sense, and with a irrepressible urge as described by the wave like sensations I get in my head beforehand. It doesn't happen often, only in severe exacerbations.

Your right, It could very well be a NES ( I don't think it's epileptic) but I just wondered if this kinda thing was a phenomena known in pans/pandas?

Edited by Hitman3161

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Like Jan251, I believe that if you look at the clinical diagnostic criteria for PANDAS or PANs, tics are included but not exclusive or required.  That said, I think sometimes it can be difficult to distinguish what constitutes a "tic," particularly if it fails to take a classic form (head-jerking, etc.).

My DS had an OCD diagnosis for years prior to a PANDAS diagnosis, so we had a "pre-programmed" awareness of all things that took the form, to our eyes, anyway, of obsessions and compulsions.  But, frankly, it took discussions on this forum for me to realize that his tongue-clicking and his leg-dragging were also tics driven by the PANDAs inflammation.

Frankly, I would think that any manifestation of a movement disorder -- assuming no other diagnosis or perhaps even attributable to some other diagnosis, since many technical diagnoses are really just a label assigned to a symptom set, but not an identification of the underlying cause -- could be a PANDAS/PANs symptom.

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Firstly, thanks for replying. On reading the literature, your right, its absence doesn't appear to preclude diagnosis. It's just when you examine the studies conducted by the NIMH, the prevalence in the clinical population estimates up to 70% of cases include tics.

I can definitely relate to the motoric hyperactivity as a defining feature during 'flair up' times, but again at such a desperate time with progressive cognitive deterioration along with many other troubling symptoms, its nice to  know you really fit into a 'very reversible' pans/pandas box. I'm sure you can understand. 

The dream from here is really just to sit in outpatient setting, receive immunotherapy and just feel like the weight of the world has been lifted from my shoulders. I've gone so long with little support from family, it's taking a huge effort to convince them of the need to follow up with the process.

life used to be so enjoyable, maths was great  (grade A) I was succeeding and then OCD struck...

Now I have no one, I've become very isolated, a target for ridicule by my peers and to put it very simply, very misunderstood...

 I really do appreciate what both of you have said, the level of psychosocial trauma I've experienced is off the scale. But intrinsically, I know now my last hope really lies in pursuing  PANS/PANDAS...

 

 

 

 

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For what it's worth, my kiddo does not have any tics as far as I can tell; OCD is his main problem.  That doesn't seem uncommon at all among the PANS/PANDAS families on Facebook though I have not seen stats on that.  He is very strong in math though he struggled to pay attention for a year or two after onset.  IVIg helped immensely with attention and executive function and he's back on track academically, still advanced in spite of the lost time, and in spite of the continual OCD.  (Anecdotally, there seem to be a lot of gifted and twice-exceptional kids with pandas.)

How old are you, Hitman?  There are a number of Facebook groups for PANS/PANDAS, several for "plain" PANDAS, PANS with Lyme, treating with herbals, local groups for particular areas/states (these are great for finding doctors), and on and on.  I think I'm in about 9 groups, LOL.  Most are parent groups though there may be a few groups for teens and I may have seen one mentioned for adult pandas.  The Facebook groups are far more active than this forum!!

Edited by jan251

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Hi Jan,

I'm 24 now, so a considerable amount of time has been lost. To be quite frank, I've exhausted all psychological services, riding on a very late AS diagnosis - only sought after during acute exacerbation. I can't speak highly for the rather blasé and flippant approach received from my local clinicians. Each session has felt more like a casual get together, only to ask how  'I've got on'. I'm never rude though, I always show respect, I just don't believe there really taking my symptoms seriously enough, but there's little they actually do see.

I admit, perhaps they realise they can do little to help my situation, my symptoms have always followed an atypical and inconsistent course. For months on end I will be totally dysfunctional, unable to effectively care for myself etc., then gradually I will achieve functional recovery to the point of near full independence.

my sinuses and head feel terrible, but what I find is that after every 'relapse' there is a continual progressive decline, so it's clear that ultimately my condition is deteriorating. This has been most pronounced since 16, but perhaps that is because of an increased level of expectation, responsibility and social standing etc.

I was once very strong at maths to the point that it was rather etched into my identity. Now, I'm struggling housebound, alone and isolated.

Having to reinvent and pick yourself up from nothing each time is very difficult, not to mention how embarrassing it is in the ignorant eyes of others.

I just feel something went missing in others eyes along the way... It's the acuity and sudden severe onset of symtoms that really make my case stand out.

 

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Sinuses - I don't know if this will help, but... my child has had high strep titers for three years.  In trying to get at the source of the infection, we are now looking at sinuses.  He only has mild post-nasal drip, nothing obvious, but our (pandas-friendly) ENT noted areas of possible infection on a sinus CT.  (Sinus CT was ordered by our immunologist.)  We are doing Sinus Rinse with antibiotic gel, but there may be more over-the-counter approaches to try.  I don't know whether we will end up doing sinus surgery or not - too soon to tell.

Bottom line is that if you have sinus issues, I would get on that right away.  One of the theories of the mechanism of PANDAS is that troublesome antibodies cross over into the brain via the olfactory bulb.

Improvement of psychiatric symptoms in youth following resolution of sinusitis
http://www.ijporlonline.com/article/S0165-5876(16)30380-9/fulltext

Sinus problems are not uncommon - I would try to find a really good sinus specialist (typically an ENT).  That doesn't have to involve explaining the whole PANS/PANDAS thing.

Besides Sinus Rinse and over the counter sinus approaches, you can also swab your own throat for strep - swabs available on Amazon (then if positive, take yourself to a doc or urgent care).

For an immunology workup, you'd need to see a doc.

Edited by jan251

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Yes, I have an ENT consultation scheduled for the 8th of august. As mentioned previously with contemporary practising guidelines it's very difficult to receive T&A without notable cause - in this case crupe, enlargement of tonsils causing restrictive breathing etc. 

I still have no idea how I'm going to work around this, but I will ask for drainiage and/or surgery. 

I have had select serological testing done which with the exception of a high eosinophil count, tested negative.

the tests done were:

ASO antibodies

Anti-nuclear antibodies 

Mycoplasma Pneumonia (IgM only)

Anti-NMDA receptor antibodies 

and a Lyme panel conducted at BCA labs in Germany.

I know this isn't a full medical work up by any means. I was rejected any testing on the NHS after subsequent discussion of PANS, so all testing was privately funded in the several hundreds through Blue horizon blood testing services.

It kinda hurts when your family are constantly telling you that you would definitely test positive if it was an infectious related cause and PANDAS... I'll probably never know what's causing inflammation of the sinuses but drainiage seems to be the most viable option at this point.

So yes, I'm a very isolated, misunderstood outcast and now desperately trying to save my mental faculties - but I'm up against the Great wall of china on this.

I have tried to email Dr Swedo for her clinical opinion, and the rest lies on my mums grudging acceptance to speak with Dr K.

But the point, yes I definetly get those sinuses cleared, thanks Jan.

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Hi Jan,

Yes, and thanks. I will join later, but just from reading the description, it really epitomises the disdainful attitude for PANS/PANDAS in this country and the situation I find myself in now...

Hopefully, in ten years or so with an effective paradigm shift in the medical community and a change in political and financial interests, we won't have to struggle so much...

The sad thing is the research is out there, it does exist and will continually evolve until the point at which the mainstream medical community will be unable to ignore it any longer .

 

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