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Proposal for a working definition and classification of PITANDS


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One other thing that just occurred to me in the shower: what about neuro symptoms that aren't considered psychiatric? Are sensory issues/symptoms ubiquitous enough to fit in there somewhere?

 

 

YES! i understand that the official criteria is 'diagnosed with OCD', but that always frustrates me. it blows my mind to think that we could have and would have tried to treat my son behaviorally for years - YEARS - save one very savvy behavioral therapist! still, his official diagnosis is "anxiety NOS" and i'm just beginning to try to discover the role sensory dysfunction may play. we have not done cunningham but there is no doubt in my mind he is pandas -- sudden presentation, severe separation anxiety, high titers, positive strep culture, 100% improvement with inital abx (then relapse when off that abx).

 

dr k's website lists 'other' symptoms that i believe are very helpful. i would really like to see those neuro systems and sensory issues included. his symptoms and exacerbations still are behavioral. at the time of presentation, he'd been to the ped and they kept brushing me off with 'just a cold, virus, etc'. his current ped is much more aware and sees physical symptoms when he's having behavioral issues but b/c i initially went there with pandas and the backup.

 

no one was looking for a medical reason b/c it was seemingly a behavioral problem.

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Momto2pandas - my ds2 (possible PANDAS - some signs, raised CaMK and anti neuronal) does the multiple start to sentences and words thing.

 

I had thought it was just him/age although it doesn't feel quite right. It can feel more OCD to me 'cos he will also repeat the whole sentence (sometimes) until you mirror his sentence back to him.

 

Trouble with this age for me is, I'm left wondering what is normal or not. Is repeat starts to words or sentences just a normal 2 yr old organising their thoughts/a stammer/speach issues/PANDAS? Is the repeating of sentences, again, just a normal 2 yr old developing their ego and wanting to make sure they are heard? (he does apear to have a healthily developing ego :) )

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Proposal for a working definition and classification of PITANDS

 

 

Working definition of PITANDS

 

1. First onset of symptoms in Pediatric age group 0-18 years

 

2. Acute or persistent onset of neuropsychiatric symptoms, characteristically, but not limited to tics or OCD

 

3. Usually, but not always, in association with an acute or persistent identified infectious triggers (GABHS, mycoplasma, others)

 

4. Rapid improvement of symptoms with anti-infective agents, usually antibiotics

 

 

Notice these criteria are much broader than the Swedo PANDAS criteria, still verifiable, but still including most children discussed in this forum.

 

Notice that the hardest to verify part, the "autoimmune" part, is left out of the criteria (though it always behind the scenes)

 

 

 

 

 

SUBGROUPS

 

Type 1 PITANDS - PITANDS in an apparently immunocompetent host

 

A. PANDAS (exclusively streptococcal trigger) - more common in younger children

Swedo-type (classical PANDAS)

PANDAS variants OR atypical PANDAS(see PAVONE ET AL, 2006)

 

B. PANDAM (exclusively mycoplasma trigger)

 

C. PANDAF (exclusively flagellated bacteria trigger) - covers Lyme and Lyme-like cases - maybe be the most common non-PANDAX group

 

D. PANDAX (multiple infectious triggers) - many of our children fall into this category - more common in older children

 

E. Idiopathic anti-INFECTIVE-responsive neuropsychiatric disorder, not otherwise specified (PITANDS-NOS) - the wastebasket group

 

 

Type 2 PITANDS - PITANDS in an congenitally immunocompromised host

 

This group typically shows:

 

1. Lack of serological response to known triggers despite independent documentation of infection (includes culture (+) strep but antibody negative group)

2. Often, but not always, unusual response to vaccines including lack of serological response to vaccines

3. Often, but not always, a history of very frequent infections, including strep, before age 2

 

A. With humoral (B-cell) immunodeficiency - includes CVID, subclass deficiency, HyperIgE/Job and HyperIgM (including female type)

 

B. With cell-mediated (T-cell) immunodeficiency

 

 

Note:

 

1. Children may start off as PANDAS, PANDAM or PANDAF but as they get older and persistent infections pile up, most end up as PANDAX

 

2. Children with Type 1 PITANDS may start off immunocompetent but then become progressively (and usually selectively) immunocompromised. This is different that the Type 2 group where the children are immunocompromised very early on.

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Just a thought. The PANDAS acronym is now "out" and getting publicity (although some not so good). Wondering if perhaps there is another way to use it. For example A.S. for And Syndrome?

 

Zazuk2010

 

You are absolutely right. PANDAS has 100x the name recognition of PITANDS.

 

We have to find a way to not abandon PANDAS ....

 

Maybe just PANDAS-PITANDS or "PANDAS-like ILLNESSES"

 

Also, this classification is really more for doctors, ICD9 codes and the like. And to organize one's thoughts.

 

I thought this would be a good time to talk about PITANDS criteria with the new forum name this week ....

 

 

It's much better to "ThinkPANDAS" even if you don't "GotStrep" LOL

 

Dr. T

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Just a thought. The PANDAS acronym is now "out" and getting publicity (although some not so good). Wondering if perhaps there is another way to use it. For example A.S. for And Syndrome?

 

Zazuk2010

 

You are absolutely right. PANDAS has 100x the name recognition of PITANDS.

 

We have to find a way to not abandon PANDAS ....

 

Maybe just PANDAS-PITANDS or "PANDAS-like ILLNESSES"

 

Also, this classification is really more for doctors, ICD9 codes and the like. And to organize one's thoughts.

 

I thought this would be a good time to talk about PITANDS criteria with the new forum name this week ....

 

 

It's much better to "ThinkPANDAS" even if you don't "GotStrep" LOL

 

Dr. T

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Just a thought. The PANDAS acronym is now "out" and getting publicity (although some not so good). Wondering if perhaps there is another way to use it. For example A.S. for And Syndrome?

 

Zazuk2010

 

You are absolutely right. PANDAS has 100x the name recognition of PITANDS.

 

We have to find a way to not abandon PANDAS ....

 

Maybe just PANDAS-PITANDS or "PANDAS-like ILLNESSES"

 

Also, this classification is really more for doctors, ICD9 codes and the like. And to organize one's thoughts.

 

I thought this would be a good time to talk about PITANDS criteria with the new forum name this week ....

 

 

It's much better to "ThinkPANDAS" even if you don't "GotStrep" LOL

 

Dr. T

 

 

 

 

Very funny. I needed a laugh today.

 

:) Kari

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Gina - were you writing about your son here or my son? hmmmm sounds like the same story. I wonder how many other peopls have the same story?? Hey - Mom to 2 Pandas - we NEED that survey research you've spoken about. That will help to fill in the symptoms.

Looking back over my son's medical history, he began to show aggressive tendencies and severe sensory issues at about 2 following a year where he had something like 8 ear infections. I think THAT is really when his issues started, but strep at age 5 is when the stuff hit the fan. By lowering the age, maybe we can catch things for some kids sooner.

 

I hope by changing the criteria pediatricians would be aware to watch for psycho-nuerological changes in their patients that do have a lot of infections. A list of possible manifestations would be critical in my opinion. For me I didn't know if we'd just hit the terrible twos or what, but looking back, the sensory issues and change from being very good natured to very aggressive should have been a red flag. I'd hate to subject kids to a million tests when but when a kid is having soooo many ear infections and is unable to clear them, shouldn't we be wondering what is going on. Especially when the constant ear infections clear but then the constant strep starts. That is my biggest complaint with most doctors these days, they don't look for "why", they just treat the 7th ear infection and schedule tubes assuming "why" doesn't matter as long as we fix it. Then later treat the 7th strep infection and schedule the T & A assuming that will fix the strep problem. But I now realize the "why" can still affect them in other ways because it hasn't been addressed. And if that same kid is the one the mom starts bringing in saying, something is wrong, does he have ADHD? Something is wrong, i think he has OCD. Something is wrong, he gets so many stomachaches and headaches. Something is wrong I think he has Tourettes. Something is wrong, does he have a learning disorder because his schoolwork is deteriorating and his handwriting is awful. Shouldn't a doctor be able to connect the dots here? Why is this one kid having so many problems!!! Changing the criteria would help, but I guess the big question is how we get pediatricians on board with this. How do we find a way to get the word out so it is common knowledge, not something they think they read something about once but it is so rare it can't possibly be your kid.

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Dr. Rosario Trifiletti,

 

My son has a DX of Tourette's but I really don't understand the PITANDS, so maybe this is helpful. He exploded with tics after the TDAP and Meningococcal vaccines.

 

He has responded well (less tics) with Keflex at about day 8. Antibiotics were only to treat strep, once the abx were done his tics came back.

 

Have not had a Dr. willing to give me abx for any length of time to see how long he would do well on them.

 

Exploded at age 12

 

He is now 16

 

CP

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On the speech, yes, I always thought that the speech thing was my younger son just being little, and my older one being excited. As my little guy has approached 4, though, and has progressed so dramatically with vocabulary, grammar, etc., it has seemed odd that this has persisted. I went for the speech evaluation for the heck of it, and was surprised to find that the SLP already recognized this pattern as typical of PANDAS and abnormal for ds's age. I had noticed that it correlates pretty much perfectly with their infection/antibiotic cycle (having gone through 9 on-off rounds of this cycle in the last few months makes these patterns easy to spot!). I have wondered if it has to do with "word finding". I know that when I have had episodes, I have felt a delay in calling forth the words I am looking for. I wonder if when my kids get "stuck" in that way, they go back to the beginning of a sentence and do it again and again as a way of pausing until their brains find the word they are looking to say next. I don't really know anything about the neurology of speech - this is just pure speculation.

 

At their ages, they don't feel self-conscious about it, but it's another one of those things that I want to get resolved before they get to the ages where they do feel self-conscious.

 

 

Momto2pandas,

 

I am a SLP and have always been keenly aware of my dd10's changes in fluency and linguistic output. Before we were recently made aware of the PANDAS connection, we were on the psychiatric med merry-go-round for 4 years. She usually had a positive response to SSRIs that would quickly fade as well as result in behavioral activation. One thing I would always notice on the initial positive side would be her improvement in linguistic fluency, word retrieval and vocabulary usage (which duh, helps socially). Similarly, so went the handwriting, so went dd10. You can look at her assignment copybook and see the patterns of fluxuation in her handwriting that matched how she was functioning at that time. Since on to PANDAS and abx, we have seen similar improvements and ups & downs in her language and handwriting. I viewed these changes as her manifestation of cognitive static, but isn't it interesting that these symptoms (albeit temporarily) improved with SSRIs (not stimulants or mood stabilizers) and abx. similarly to OCD.

 

The psychiatrists would always look at me funny when I would describe these types of improvements with SSRIs or indicators of decline when they stopped working.

 

Jill

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Working definition of PITANDS

 

1. First onset of symptoms in Pediatric age group 0-18 years

 

2. Acute or persistent onset of neuropsychiatric symptoms, characteristically, but not limited to tics or OCD

 

3. Usually, but not always, in association with an acute or persistent identified infectious triggers (GABHS, mycoplasma, others)

 

4. Rapid improvement of symptoms with anti-infective agents, usually antibiotics

 

 

Notice these criteria are much broader than the Swedo PANDAS criteria, still verifiable, but still including most children discussed in this forum.

 

Notice that the hardest to verify part, the "autoimmune" part, is left out of the criteria (though it always behind the scenes)

 

If it doesn't have to be associated with an infectious trigger or be autoimmune, then what sets it apart from other causes of neuropsychiatric symptoms?`

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Have you taken him for a strep test since then or done bloodwork? When he had his tonsils out,did he go on Keflex? Did you see improvement then?

 

If you decide to look into possible triggers, Mycoplasma is becoming more "popular" on here. That is something else you can check out through a blood test.

 

There is a chance he had an infection when he got those vaccines then the vaccines through his immune system into overload.

 

 

Dr. Rosario Trifiletti,

 

My son has a DX of Tourette's but I really don't understand the PITANDS, so maybe this is helpful. He exploded with tics after the TDAP and Meningococcal vaccines.

 

He has responded well (less tics) with Keflex at about day 8. Antibiotics were only to treat strep, once the abx were done his tics came back.

 

Have not had a Dr. willing to give me abx for any length of time to see how long he would do well on them.

 

Exploded at age 12

 

He is now 16

 

CP

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So, if many of our children hit PANDAX status...what is the treatment then? If they are reacting to any immune challenge (allergies, colds, whatever) then no antibiotic would be effective. Right? So, when they hit this stage..... wouldn't IVIG be the thing to do? If not...what would???

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