Does anyone have experience or data regarding plasmapheresis on PANDAS patients? The literature (what there is) is promising. Any information and resources are appreciated. Thank you!

OK I give up. What are PANDAS patients?

:lonely:

I'm curious too. I have never heard of doing plasmapheresis on big black and white bears! >;-)

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders assiciated with streptococcal infection. (Say that 3 times fast.) The primary diagnositic criteria include OCD, anxiety disorder, Autistic Spectrum Disorder ( often Asperger's syndrome), and strep infection. There is data suggesting that plasmapheresis can actually minimize the severity and allow non-functioning kids (and adults) to return to school and work.

Wow! That's interesting. I can honestly say that we have NEVER seen that here. However, we do not have a pediatric population here.

I'm not surprised you haven't heard of it. It's not quite "in the box" yet. There are a few articles on it, but the best I've seen is the The Lancet, vol. 354, Oct. 2, 1999.

ShowDogDad, Thank you for your interest and response. You gotta trust animal people!

Does anyone have experience or data regarding plasmapheresis on PANDAS patients? The literature (what there is) is promising. Any information and resources are appreciated. Thank you!

I have not seen a patient with this, but the literature does look promising. In all the articles I found on Pub Med, it helped. In one article the patient's tics/OCD symptoms were so severe they had to do plasmapheresis under general anesthesia the first few times, but it worked and symptoms improved.

Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections - anesthetic implications and literature review.

Sadhasivam S, Litman RS.

Paediatr Anaesth. 2006 May;16(5):573-7.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders assiciated with streptococcal infection. (Say that 3 times fast.) The primary diagnositic criteria include OCD, anxiety disorder, Autistic Spectrum Disorder ( often Asperger's syndrome), and strep infection. There is data suggesting that plasmapheresis can actually minimize the severity and allow non-functioning kids (and adults) to return to school and work.

Hi HappyCat,

Your info is very interesting, especially if you tie this in with studies that Andrew Wakehurst performed linking the MMR (measles, mumps, rubella) vaccine in precipitating autism, ( the study, which I think has now been somewhat discredited). There have also been reports of 'chelation' therapy to remove toxic compounds such as Mercury and Thimersol from the same category of patients..and reports of improvement.

I wonder if this is just another 'quick fix' or whether there is a genuine link to autoantibodies, possibly produced in response to infections or medications- causing these various conditions in some of these patient groups.

keep us posted!

According to the data I've read, the results last at least a year, but suggest they could even be permanent. I know some people have the process repeated.

Do you think toxins, i.e. mercury, could cause severe OCD in teenagers?

Thank you again for your ideas and interest!

I don't know!...but there are thoughts that mercury etc could be linked to ASD's . How closely linked are OCD and ASD? Many autistic children have OCD like behavious - but this is mainly a way of coping with poor communication and stress levels. There are so many other factors involved, genetics being one of the key ones.

If the behaviour materialised during teens, it's not impossible for it to be linked to toxins/ diet etc.

I'm no expert on this- just interested.

Hi Rashmi (and anyone else patient enough to read this),

I'll try this on you: a 17-year-old with a history of manageable ASD and OCD, but following surgery, the OCD became uncontrollable and unmanageable. Perhaps a reaction to one of the surgical drugs? Now, his body metabolizes drugs at an exceptionally quick rate.

I have an unrelated question maybe you (or someone!) can answer. I am a 5 gallon blood donor, CMV negative. Six years ago, I had a flu shot, and three months later my local blood bank (Hoxworth) sent me a letter stating that, during a routine blood donation, I tested positive for Hep. C, a RIBA test was negative, but I'm still considered positive in the data bank. The letter ended that I a do not have hep. C, but still can't donate. (What??) I'm now a blood outlaw, forbidden to donate. A second confirmation test 6 months later still tested positive. I have had 3 tests from a reliable lab, all confirming I am clean and healthy. (No, I don't do drugs, don't smoke, am a boring workaholic, so I don't do that, either.) My only "vice" was a blood transfusion in 1986. I think the flu shot is the culprit. Opinions?

Thank you!!

Did the 17yr old fully understand why the surgery was necessary and were they able to express how they felt pre and post-surgery? Having an operation is stressful for most people,the ASD's would find this even more so, they could have gone into 'meltdown' - where behaviour can become intolerable due to severe anxiety.

Are they verbal/ non-verbal?- possibly using social stories would help.

I would have thought that a lot of people with ASD have difficulty accessing hospital care, I don't even know how some would receive transfusions or any significant treatment if required, especially if they are the severe end of the spectrum.

sorry- can't help with the rest!

Edited June 9, 200916 yr by RR1

Hmm... it's beyond meltdown. I don't know about the acutal surgery, which was about 1 1/2 years ago. The OCD thoughts and tics have caused several pyschiatric hospitalizations, school interruptions, and has made the family's lives tortuous. The pt needs supervision 24/7. The MD has never dealt with plasmaphersis, considers it too outside the proverbial box. We say, why not give it a shot? Worse case scenario is the pt is back where he is now.

I suppose the best thing would then be to get in contact with the original researchers and see if an assessment can be made.

Does this mean we should be deferring ASD donors? After all, if plasmapheresis gets rid of the causative agent, then plasma donation must carry said agent...

Hi Jamie, I don't think there is enough evidence to make these decisions . Patient's receiving this treatment have to meet fairly stringent diagnostic criteria, and it's highly likely they are on other medication too.

30% people with ASD have some form of seizures activity- so will be on AED's, with others that are more severe possibly also being on anti-psychotic meds. and unlkely ever to be donors.

There should be no reason to exclude a person with ASD who is not on medication.

Edited June 17, 200916 yr by RR1

It is not infectious. It results from an antibody your body produces to fight off the strep bacteria. This antibody then kills the strep but also attacks the basal ganglia within the brain because strep resembles the basal ganglial cells.

Besides, you can't "catch" ASD or OCD, for whom this particular treatment is for.

And, whatever Rashmi said, I agree with. Patients with OCD and ASD probably aren't going to be walking in, donating blood. They have a lot more stuff (technical term) going on.

Rashmi, a completely unrelated, minor grammatical detail in response to your response: "Patient's" is possessive (The patient's blood dripped all over the floor); "patients" is plural (All 143 patients saw that other patient's blood dripping all over the floor.) I taught high school English for 10 years and freelance. So, please don't take this personally! It's my quirk.

Thanks Happycat,

I definitely need a spell and grammer check function here !!

I know...grammar, i'll have to get my eldest to all my posts first!

No worries! Feel free get on mycase when I mess up!