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What exactly are the symptoms of PANDAS?


Guest pandas16

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Guest pandas16

When I was originally diagnosed with PANDAS the symptoms of the disease were categorized into an abrupt onset of tics/ocd/mood liability/frequent urination/and inability to concentrate. The original trigger of these symptoms was in most cases strep but not always. It could also be further be triggered by other bacteria and viruses which activated the immune system or cross reacted with strep as well. Either way if this happened, the treatment plan was the following: stop the infection with abx & then use immunosuppressive therapy if necessary. (PEX, IVIG, Pulse Steroids) I was informed that with the combination of these two things, it was very possible to get back to between 95%-100% and from experience I can attest that that was possible (at least for me)

 

 

Now I'm reading that muteness/ paralysis/ catatonia and a whole load of other symptoms are also associated with PANDAS and that these people ARE NOT getting 100% well after plasmapheresis. Is this something new? If the original problem is autoimmune and the infection which triggered the immune reaction is gone, plasmapheresis should technically put the disease back in remission, should it not? Is it safe to say that the people who are not getting well from plasmapheresis without an underlying infection do not in fact have PANDAS and maybe they just have other neurological problems?

 

How many people on this board just have clear cut PANDAS with no other neurological diagnosis?

Edited by pandas16
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Welcome to the forum. Symptoms and the severity of symptoms varies person to person and can vary exacerbation to exacerbation. The muteness, paralysis and other things you mentioned aren't rampant on here.

 

In regards to your other question, my son is clear cut PANDAS.

 

 

 

 

When I was originally diagnosed with PANDAS the symptoms of the disease were categorized into an abrupt onset of tics/ocd/mood liability/frequent urination/and inability to concentrate. The original trigger of these symptoms was in most cases strep but not always. It could also be further be triggered by other bacteria and viruses which activated the immune system or cross reacted with strep as well. Either way if this happened, the treatment plan was the following: stop the infection with abx & then use immunosuppressive therapy if necessary. (PEX, IVIG, Pulse Steroids) I was informed that with the combination of these two things, it was very possible to get back to between 95%-100% and from experience I can attest that that was possible (at least for me)

 

 

Now I'm reading that muteness/ paralysis/ catatonia and a whole load of other symptoms are also associated with PANDAS and that these people ARE NOT getting 100% well after plasmapheresis. Is this something new? If the original problem is autoimmune and the infection which triggered the immune reaction is gone, plasmapheresis should technically put the disease back in remission, should it not? Is it safe to say that the people who are not getting well from plasmapheresis without an underlying infection do not in fact have PANDAS and maybe they just have other neurological problems?

 

How many people on this board just have clear cut PANDAS with no other neurological diagnosis?

Edited by Vickie
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No, I don't think it's new - I believe they are just starting to realize that it's the tip of a very large iceburg. As word is beginning to get out, more & more parents are recognizing that the things they have been told were psychological actually correspond to their child's repeated illnesses.

 

I am one who dismissed PANDAS when I first heard about it because we do not have a known history of strep (only one trip to the dr for it somewhere when my ds18 was between 4 & 6). My son's issues seem to be viral rather than strep. But his story follows virtually the same pattern as the strep kids. Wish I had known about PITAND sooner, but I'm glad that we at least have some answers and can offer him some hope of help even if it may be too late for a full recovery.

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How many people on this board just have clear cut PANDAS with no other neurological diagnosis?

 

My daughter has just PANDAS with no other neurological diagnosis.

 

For original research studies, many times the criteria needs to be tighter.

 

My Daughter didn't speak. Probably more because it was compulsive. We don't press her for details, but one of the few times she explained that she thought she wasn't allowed to speak, and she had a feeling in her throat.

 

I also suspect she was in real cognitive distress - thus not really even able to form her words or thoughts.

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When I was originally diagnosed with PANDAS the symptoms of the disease were categorized into an abrupt onset of tics/ocd/mood liability/frequent urination/and inability to concentrate. The original trigger of these symptoms was in most cases strep but not always. It could also be further be triggered by other bacteria and viruses which activated the immune system or cross reacted with strep as well. Either way if this happened, the treatment plan was the following: stop the infection with abx & then use immunosuppressive therapy if necessary. (PEX, IVIG, Pulse Steroids) I was informed that with the combination of these two things, it was very possible to get back to between 95%-100% and from experience I can attest that that was possible (at least for me)

 

 

Now I'm reading that muteness/ paralysis/ catatonia and a whole load of other symptoms are also associated with PANDAS and that these people ARE NOT getting 100% well after plasmapheresis. Is this something new? If the original problem is autoimmune and the infection which triggered the immune reaction is gone, plasmapheresis should technically put the disease back in remission, should it not? Is it safe to say that the people who are not getting well from plasmapheresis without an underlying infection do not in fact have PANDAS and maybe they just have other neurological problems?

 

How many people on this board just have clear cut PANDAS with no other neurological diagnosis?

 

Hi- I read your post on conversion disorders and I was wondering if you could possibly tell me about tetraparesis? Is this something that is often associated with PANDAS or is it different? Does your son have PANDAS only?

 

pandas16

 

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Hello, pandas16.

 

When my son was first stricken by PANDAS/PITAND four years ago, following three infectious illnesses in close succession, his symptoms were "classic" -- severe, sudden-onset insomnia, hyperactivity, intrusive thoughts, separation anxiety, mood lability, "rituals," episodic incontinence, etc. Nonetheless, he received an incorrect diagnosis of bipolar disorder. Three years later he suffered his worst exacerbation to date following an ordinary flu shot, and was stricken by Sydenham's chorea. The best of the researcher/writers on these diseases and the most expert of the clinicians diagnosing and treating them understand that PANDAS/PITAND and Sydenham's chorea are not perfectly discrete illnesses; rather they constitute parts of a larger spectrum of post-infectious neuro-psychiatric autoimmune disease. Illnesses referred to in the scientific literature by other names, such as "encaphalitis-lethargica-like syndrome," and "anti-NMDA-receptor encephalitis," may also be parts of this spectrum. The doctor who finally identified what was really wrong with my son diagnosed him with "a variant from the Sydenham's-chorea/PANDAS family of illnesses." The specialist currently treating my son has diagnosed him with "PANDAS/Sydenham's-chorea." But, if only the PANDAS/PITAND had been diagnosed and treated back in the beginning, my son might never have developed the Sydenham's chorea.

 

Tetraparesis means loss of muscle tone and strength in all four limbs. It is associated with Sydenham's chorea, as is mutism. Here's a relevant excerpt from Dale and Church's "Post-Streptococcal Neuropsychiatric disease: Sydenham's Chorea and Beyond," a chapter from Neuropsychiatric Disorders and Infection, 2005:

 

Chorea remains the classic movement disorder occurring after streptococcal infections. . . . However, it is not unusual for multiple movement disorder phenotypes to be observed in neurological disease. . . .

Apart from chorea, opther 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. . . .

 

Sadly, no, a single plasmapheresis treatment will not necessarily drive these illnesses into remission. The odds of such success are greater when the illness is caught early.

 

I'm so glad for you -- that you have been correctly diagnosed and successfully treated! I hope some day I will be able to say the same for my son. . . .

 

Tenacity

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Guest pandas16

Hi Tenacity- Thank you for your response. I'm sorry to hear that your son was diagnosed late and that he is not doing well. However, I was actually diagnosed late too- 3 years after initial onset and still managed to achieve remission. Do you mind me asking how the plasmapheresis was done with your son? I heard that you need at least 3 infusions to remove the bad antibodies but it still takes about a month or two before all the inflammation goes down.

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. . . I was actually diagnosed late too- 3 years after initial onset and still managed to achieve remission. Do you mind me asking how the plasmapheresis was done with your son? I heard that you need at least 3 infusions to remove the bad antibodies but it still takes about a month or two before all the inflammation goes down.

 

 

pandas16 - You mention that you had pandas for three years before diagnosis - how old were you when you were diagnosed? What treatment did you receive? How long did it take you to get better?

 

 

Yes, pandas16, I'd like to know the details of your story too! We need to hear success stories around here!

 

Re. the question of "initial onset": Although the sudden-onset of an array of acute neuro-psychiatric symptoms is considered a hallmark of PANDAS/PITAND, and we tend to equate "the start" of the disease with these dramatic explosions of symptoms, I've come to think that "the start" may be a more complex thing. My son's first huge, unmistakable symptom explosion occurred about four years ago, following a series of infectious illnesses. However, during the two years preceding this "sudden onset," there were a couple occasions when -- seemingly out of the blue, for no identifiable reason -- he suffered severe nighttime anxiety and insomnia and needed to be in his parents' bedroom all night for about 10 days or so. Then the nighttime anxiety would disappear again, and everything would return to normal. I can see now in the medical records that the first time I ever discussed one of these odd stretches of anxiety with the pediatrician, my son was six years old, and that a few months before this he had been diagnosed with mycoplasma pneumonia. I also suspect that the chronic bacterial upper respiratory infections my son suffered as baby and toddler likely played some role in the development of his auto-immune disease. Although it's important that we learn all we can about strep, I think we need to bear in mind that the diseases we're talking about are not infectious, but post-infectious. Autoimmune disease doesn't fit the old one-germ-one-illness paradigm. Even if strep is most often the original precipitant of these diseases, it is not the only possible perpetuator.

 

Re. the plasmapheresis: Yes, the current protocol at Georgetown University Hospital is three rounds of plasmapheresis on three consecutive days -- or in as few days as can be managed safely. (They want to minimize the time the patient is hooked up to the IV in order to minimize the chances of infection. But since anticoagulant is administered during the procedure in order to prevent blood-clotting, they must monitor clotting capacity carefully, and sometimes the patient requires a day off between rounds.) I have heard that elsewhere sometimes more than three rounds of plasmapheresis are administered, and perhaps for certain conditions other than PANDAS/PITAND they administer fewer -- I don't know. I suppose, as with the question of IVIG dosing and timing, there's some guessing and experimenting involved.

 

Re. improvement post-plasmapheresis: Reports vary. But changes can become noticeable within days or weeks, and may continue to occur over many months. However exposure to infection can cause relapse.

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Well, I've tried to get other neurological dx's, because I had no idea what was going on.

Went to a child psychologist, he told me it was my parenting (yeah, I have 2 other children, I'm older, I KNEW it wasn't my parenting!)

Went to an autism clinic through my insurance, 3 hour evaluation by experts, they said: 'She is not on the autism spectrum, we see mild social anxiety, and some selective mutism.'

When I asked about her breakdowns/rages, they shrugged and said: panic attacks?

Went to an Occupational Therapist who specialized Sensory, we did 10 months of Sensory OT.

 

Our CAM test should be back next week.

We have had debilitating OCD come and go, other OCD's that stay (clothing) separation anxiety to the max, on and on.

She was exposed to strep as an infant in daycare, had abnormal head growth, unexplained and untreated fevers.

Documented strep at 2 1/2, treated, but things got very, very tough from there.

I'm in the beginning, and waiting, waiting, waiting for this CAM test, but if it is PANDAS/PITAND, I will say this is ALL of her issues, in addition to leaky gut issues (from inflammation?)

We are on Azith. and ibuprofen daily, 20 days or so into it...seeing relief, social anxiety markedly decreased at kindergarten, much, much shorter rage/uncontrolable with her body episodes, but I'm not sure what true baseline looks like-

Sarah &

Samantha 5

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Tenacity- I agree with you and many, many others that have commented on the "brewing" stage prior to the explosion of symptoms that is being termed "sudden onset." But as we saw by another recent poster on here, parents that obseve and relay those brewing symptoms to doctors, including the IVIG study screeners, are being penalized as having had this too long???

 

A problem with this study could be....the type of parent that doesn't notice or question these brewing pre-sudden onset stage of symptoms is unlikely to be the type of parent who is going to find the IVIG study on the internet, no?

 

OR

 

Parents who do notice/observe, maybe have an older PANDAS child, have been through the trenches once already, are going to have to wise up, keep their mouths shut and report to the study screeners they have previously never noticed a darn thing out of the ordinary about their child prior to just now.

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Parents who do notice/observe, maybe have an older PANDAS child, have been through the trenches once already, are going to have to wise up, keep their mouths shut and report to the study screeners they have previously never noticed a darn thing out of the ordinary about their child prior to just now.

 

Don't know why this made me laugh so hard! I wonder how many of us have engaged in subtle or not so subtle deception to get our kids help?

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These are good questions. Hard to answer though. In my son's case, he is very clear PANDAS, with no other neurological diagnosis, nor symptoms before PANDAS. He had very abrubt onset OCD, absolutely crazy, psycho behavior, motor tics and vocal tics after a long battle with strep pharyngitis/tonsillitis. He was the classic, "Who is this, and what have you done with my child."

 

I have to laugh now (not really... more like cry and kick myself) about how long ago PANDAS was suggested for my son by a psychiatrist. He had his first episode (echolalia and chorea movements) in 2003. In 2004 he had his second, and that is when I described his illness to a psychiatrist (she hadn't even seen him!) and she said, "That sounds like PANDAS." CAN YOU BELIEVE I LAUGHED AT HER??? I thought SHE had gone off the deep end, not ME!! I mean, I had READ THE PAPER, ALREADY, REFUTING PANDAS. I wondered how she could still believe it???

:lol:

 

If only...

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Tenacity- I agree with you and many, many others that have commented on the "brewing" stage prior to the explosion of symptoms that is being termed "sudden onset." But as we saw by another recent poster on here, parents that obseve and relay those brewing symptoms to doctors, including the IVIG study screeners, are being penalized as having had this too long???

 

A problem with this study could be....the type of parent that doesn't notice or question these brewing pre-sudden onset stage of symptoms is unlikely to be the type of parent who is going to find the IVIG study on the internet, no?

 

OR

 

Parents who do notice/observe, maybe have an older PANDAS child, have been through the trenches once already, are going to have to wise up, keep their mouths shut and report to the study screeners they have previously never noticed a darn thing out of the ordinary about their child prior to just now.

 

 

Another relevant posting from a while back:

 

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nevergiveup

Posted 12 December 2009 - 11:42 PM

 

I am very concerned about how many docs ,neuro's, psychiat, are now saying they are pandas experts. Who is your PANDAS expert?

I am disgusted with the amount of neuro's and hospitals saying they know pandas, and they are just using that diagnosis but still ONLY offerring typical SSRI trmt and clonidine, tenex (Sedatives) for movement disorders. They may give one year of Pen VK at best. I want to post a warning to all parents running to your children's hospital whom say they know PANDAS. If they believe in PANDAS, (the A stands for autoimmune in pandas) then ask if they will treat the autoimmune part??? I understand that they will go conservative at first with PEN VK but ASK ASK if your child gets worse what are the next steps!!!!! Ask what further treatments they offer on relapse. If they don't say steroids, and potential IVIG for very serious cases you are NOT with a pandas expert. Haldrol, clonodine, Prozac are not drugs for autoimmune illness rather tourettes and OCD. Please know whom you are dealing with. I am putting out this notice because docs and peds are taking strep titers, prescribing short term abx and then telling parents it will go away and saying they are PANDAS experts. Of late I am seeing many mothers on this forum whom have been seeing docs whom say they are familiar with PANDAS but yet they have only referred the kids to shrinks. WHY is an autoimmune disease with a psychiatrist?? Ask and insist that you are with an EXPERT. If you need one check the forum list of docs. 7 years ago most docs didn't know the name PANDAS, now all peds have heard of it. And we are making progress, but don't be fooled by the fact that we have a long way to go. I cannot tell all of you how important it is to have a relationship with the right doc from the get go. If, and god forbid, your child relapses then you have someone (doc) by your side that knows what to do. This is not the time to find out your doc doesn't know what to do. ASK THEM, how many have they treated, what is protocol if your child doesn't improve on abx. What immune blood markers should be reviewed. (Not just ASO, like IGG, subclasses, ANA, Components, t cells, Pnemoccocal titers etc...). What studies are they familiar with and what other PANDAS experts do they know and communicate with. How many children have they treated or helped with the autoimmune part? (Not just the psych part). If we all start digging harder and requiring our docs to try harder our grandkids may not need to go through what our children are going through.

 

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The big problem I see is that the narrow parameters of controlled studies are routinely being indiscriminately and inappropriately applied to the process of differential diagnosis in the clinics. And pseudo-PANDAS-experts are cropping up everywhere. Our "local PANDAS expert," a pediatrician who has published on PANDAS, and who has rubbed elbows with PANDAS research celebrities, utterly failed to recognize my son's severe, advanced PANDAS/SC. He claimed, with an air of absolute authority, and without batting an eye, that kids with PANDAS always have documented strep throat, followed a few weeks later by high strep antibody titers and wiggling fingers. Not only is this simply untrue, even if a child's illness starts out in precisely this way, it's unlikely to look like this several years in! So -- what?! -- if you're misdiagnosed and mistreated for years and get even sicker, then you're no longer eligible to be correctly diagnosed and correctly treated? . . . Now that's what I call "sick"!

 

Tenacity

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