Yes another survey

[Luna2]

Hi Thanks for the great survey. You are such an asset for all of this work! My daughter was in a major flare up last night from a virus. Her first episode (2007) was strep related and I don't think any of her other episodes were/are. Adding a question that reflects the pitands part of PANDAS might be useful. It is hard to do everything and keep the survey short. I certainly understand. Thanks for ALL of your work.

[T_Mom]

There needs to be a category or response for those who had "other illness" (e.g., possibly teeth issues, sinusitis showing up on the MRI) in conjunction with the Ps outbreak...NOT ONLY "strep" (via titers, etc.)

 

The construct of Pandas must note those for whom a "positive strep" is never validated--for example: Our d had raging-crazy Pandas/OCD/ mild tics, sudden onset, and subsequent alleviation with steroids and antibiotics, but the MRI showed sinusitis in her sinus cavity...we never could "show" a positive strep.

 

The construct of Pandas/Pitands needs to address those children for whom the parents did not "catch-at-the-right-time" strep.

[peglem]

This is amazing.

 

Can you clarify re: the Cunningham tests, if above normal refers to the range or the mean?

 

Also, wasn't sure how to deal with the symptom list. DS9 has primarily motor and vocal tics. He has some of the other, but they are so mild that if I didn't know to look for them (thanks to this group) I would either never see them or pass them off as minor quirks of childhood or personality. I guess I'll put them in as co-occurring.

 

And, as for the trigger - I think that his was a tooth extraction that occurred w/o prophylactic abx. Can you add/expand the trigger question?

Maybe you could add what the range is for each category- that way we could just look at our numbers and see where they fit. I get the impression from people who have reported their results recently, that they are reported a bit differently than when I got the test a year ago. I was not told what the mean score was when I got my results. Also, would be cool to see the CamK scores categorized to correspond to Cunningham's graph- ie...sydenham's range, PANDAS range, etc.

[norcalmom]

Can you add a button for blood drawn when in or out of exacerbation for cunningham test results?

Maybe a button for taking a couple of the popular drugs (SSRI's or others?) I think some can effect Dop 1,2 blood levels?

 

I've been looking up the four anti-neuronal antibodies cunningham decided to test for in addition to the cam K II (I'm trying to gather info for letter to insurance company). Interesting. I wonder if our kids would correlate to what they are each suspected to have causes in -

anti-Lysoganglioside - chorea, cancers

Anti -Tublin - SC and alzhiemers

Anti-dop 1,2 -parkinson's disease, schizophrenia, intense suspicion and paranoia

 

ds was high Cam K II, and anti-lyso.Main symptom tic. But he was not in exacerbation. In exacerbation he definatley had more sysmptoms that would fall into suspicion and paranoid category (like checking and confirmation questions)..so makes me wonder if when in exacerbation kids are more likely to have all levels high(esp Dop levels).

 

Can't wait to see results! Thanks for putting together. Only you would get 60+ replies in what? an hour? two?! We love you Buster!

[Stephanie2]

I don't know how to delete cookies either, trying to enter data for my 2 year old.

[thereishope]

Did you try this...

 

If you can do a search on your computer (under search program and files), search cookies. You'll see something about deleting temporary internet files and/or cookies. Click that and check mark delete cookies. All that does is delete browsing history and such. It will not hurt your computer and you should actually do this occassionally as a maintenance to make your computer go faster. You may have to re-enter saved passwords on websites.

 

I don't know how to delete cookies either, trying to enter data for my 2 year old.

[Vinny123]

yeah its good...but after i cleared all my cookies..i could submit one more time...and each time i follow the procedure every time :lol: i can submit a new one

[PacificMama]

Just wanting to clarify... are you trying to incorporate both PITAND and strep/PANDAS? There are many people here who have confirmed/are confirming that other bacterial infections are at the root of these neruopsych symptoms (lyme, myco, etc). Even if they do indeed still test positive and are triggered by strep.

 

I realize that you are trying to keep your survey focused. But my point in hammering the lyme/other infection testing here is that so many people end up realizing that they are dealing with multiple infecions -- not just strep.

 

Thanks for all your hard work.

[Buster]

I added the definitions of "normal" to the survey. Lots of good information in the comments. I'll pull a few of the graphs out and post them.

 

Buster

 

 

This is amazing.

 

Can you clarify re: the Cunningham tests, if above normal refers to the range or the mean?

 

Also, wasn't sure how to deal with the symptom list. DS9 has primarily motor and vocal tics. He has some of the other, but they are so mild that if I didn't know to look for them (thanks to this group) I would either never see them or pass them off as minor quirks of childhood or personality. I guess I'll put them in as co-occurring.

 

And, as for the trigger - I think that his was a tooth extraction that occurred w/o prophylactic abx. Can you add/expand the trigger question?

Maybe you could add what the range is for each category- that way we could just look at our numbers and see where they fit. I get the impression from people who have reported their results recently, that they are reported a bit differently than when I got the test a year ago. I was not told what the mean score was when I got my results. Also, would be cool to see the CamK scores categorized to correspond to Cunningham's graph- ie...sydenham's range, PANDAS range, etc.

[Tenacity]

Hello, Buster!

 

My head is spinning, thinking about your survey project and all the interesting responses you are receiving! I can only imagine how yours must be spinning!

 

I've been away for a few days, and have not yet filled out this updated version of the survey -- though I certainly intend to, and hope it won't be too late. But thoughts about your first survey have been percolating in my mind, and it strikes me that the following aspects of PANDAS/PITAND may be worthy of explicit incorporation.

 

1. psychosis, suicidal thoughts/behaviors. I haven't seen this in the literature I've read so far, but I've sure seen it in my child, and I've seen many other parents' references to it on the forum. I think the literature is behind (surprise, surprise!).

 

2. dysphagia, dysarthria, anarthria/mutism -- in conjunction with bilateral ballism. This certainly doesn't happen to all victims of PANDAS/PITAND, but it's a key symptom cluster that was noted to occur in this type of disease as far back as Thomas Sydenham. It was when I read the following excerpt from an online medical encyclopedia, that I felt certain my son must be suffering from a neuropsychiatric autoimmune disease.

 

Typically, hemiballism is of acute onset, but it may evolve over several days to weeks. The patient may be awakened by abrupt onset of violent flinging movements of the proximal parts of an arm or leg on 1 side of the body. The movements can cause injury of the involved limbs and exhaustion. There may be involvement of the same side of the face with facial and tongue movements. Distally, choreic or athetotic movements of the fingers may be apparent. The movements are said to disappear during sleep, but hemiballism has been noted to persist during lighter stages of sleep. The involuntary movements may improve with action, but, more frequently, they are worsened by attempts to move. Bilateral ballism is uncommon and may be associated with dysarthria, dysphagia, and rarely, mutism.

 

My son experienced precisely this cluster of symptoms -- which is sometimes associated with various autoimmune disorders, including Sydenham's chorea. When I told the then-treating psychiatrist, he literally laughed in my face....

 

3. paresis. This is important! Inability to move is one part of the movement disorder spectrum. My son has experienced it, and it can be terrifying. The treating neuro-ophthalmologist referred to one of my son's "paralyzed" spells as "locked-in syndrome." Again, this may not happen to everyone, but I have seen other parents on the forum describe their children as temporarily unable to move their legs, etc. Here's a relevant excerpt from Dale and Church's chapter in Neuropsychiatric Disorders and Infection (ed. Fatemi):

 

... Due to the controversy surrounding the concept of PANDAS, some would argue that chorea is the only proven post-streptococcal movement disorder. However, it is not unusual for multiple movement disorder phenotypes to be observed in neurological disease.... Indeed, different movement disorders have been described in patients with 'Sydenham's chorea' throughout the 20th century including tics, myoclonus, and tremor.... Apart from chorea, other extrapyramidal movement disorders have also been described after streptococcal infection including case reports of myoclonus, dystonia, and paroxysmal dystonic choreoathetosis. Whilst other neurological signs are less common, muscular weakness and hypotonia may occur, and may in extremes present as an apparent tetraparesis (without spasticity), termed chorea paralytic or chorea mollis. Dysarthria is also not unusual in SC, and is thought to be extrapyramidal in origin. Other neurological signs would be considered atypical, such as seizures, pyramidal signs, and dementia....

 

I'm following your project with avid interest! Thanks for all the brain-power and time you are investing in this!

 

More soon,

 

Tenacity

[Tenacity]

Another small thing! -- re. question #4. Isn't it "athetosis" (not "atheosis")?

[Worried_Dad]

Hi, Tenacity:

 

Yes, these are both very scary symptoms. Our son exhibited these as well. He was originally diagnosed with SC so I spent a lot of time on the wemove.org SC forum back then. The SC literature specifically listed suicidal thoughts and transient psychosis as well.

 

And the paresis thing - man, did that scare the heck out of my wife and me! In the early days, our son would occasionally just collapse to the ground without warning, unable to move his limbs or lift his head for several minutes. It totally freaked us out. A number of folks on the SC forums mentioned experiencing this: they called it "the rag doll effect."

 

Thanks for bringing these up!

 

 

Hello, Buster!

 

My head is spinning, thinking about your survey project and all the interesting responses you are receiving! I can only imagine how yours must be spinning!

 

I've been away for a few days, and have not yet filled out this updated version of the survey -- though I certainly intend to, and hope it won't be too late. But thoughts about your first survey have been percolating in my mind, and it strikes me that the following aspects of PANDAS/PITAND may be worthy of explicit incorporation.

 

1. psychosis, suicidal thoughts/behaviors. I haven't seen this in the literature I've read so far, but I've sure seen it in my child, and I've seen many other parents' references to it on the forum. I think the literature is behind (surprise, surprise!).

 

2. dysphagia, dysarthria, anarthria/mutism -- in conjunction with bilateral ballism. This certainly doesn't happen to all victims of PANDAS/PITAND, but it's a key symptom cluster that was noted to occur in this type of disease as far back as Thomas Sydenham. It was when I read the following excerpt from an online medical encyclopedia, that I felt certain my son must be suffering from a neuropsychiatric autoimmune disease.

 

Typically, hemiballism is of acute onset, but it may evolve over several days to weeks. The patient may be awakened by abrupt onset of violent flinging movements of the proximal parts of an arm or leg on 1 side of the body. The movements can cause injury of the involved limbs and exhaustion. There may be involvement of the same side of the face with facial and tongue movements. Distally, choreic or athetotic movements of the fingers may be apparent. The movements are said to disappear during sleep, but hemiballism has been noted to persist during lighter stages of sleep. The involuntary movements may improve with action, but, more frequently, they are worsened by attempts to move. Bilateral ballism is uncommon and may be associated with dysarthria, dysphagia, and rarely, mutism.

 

My son experienced precisely this cluster of symptoms -- which is sometimes associated with various autoimmune disorders, including Sydenham's chorea. When I told the then-treating psychiatrist, he literally laughed in my face....

 

3. paresis. This is important! Inability to move is one part of the movement disorder spectrum. My son has experienced it, and it can be terrifying. The treating neuro-ophthalmologist referred to one of my son's "paralyzed" spells as "locked-in syndrome." Again, this may not happen to everyone, but I have seen other parents on the forum describe their children as temporarily unable to move their legs, etc. Here's a relevant excerpt from Dale and Church's chapter in Neuropsychiatric Disorders and Infection (ed. Fatemi):

 

... Due to the controversy surrounding the concept of PANDAS, some would argue that chorea is the only proven post-streptococcal movement disorder. However, it is not unusual for multiple movement disorder phenotypes to be observed in neurological disease.... Indeed, different movement disorders have been described in patients with 'Sydenham's chorea' throughout the 20th century including tics, myoclonus, and tremor.... Apart from chorea, other extrapyramidal movement disorders have also been described after streptococcal infection including case reports of myoclonus, dystonia, and paroxysmal dystonic choreoathetosis. Whilst other neurological signs are less common, muscular weakness and hypotonia may occur, and may in extremes present as an apparent tetraparesis (without spasticity), termed chorea paralytic or chorea mollis. Dysarthria is also not unusual in SC, and is thought to be extrapyramidal in origin. Other neurological signs would be considered atypical, such as seizures, pyramidal signs, and dementia....

 

I'm following your project with avid interest! Thanks for all the brain-power and time you are investing in this!

 

More soon,

 

Tenacity