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What exactly are the symptoms of PANDAS?


Guest pandas16
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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.

 

 

Yup...this is what bothers me re. Swedo's recent podcast (Coffee Klatch) where she kept emphasizing that PANDAS is "overnight" and "acute". My dd had low grade symptoms (urinary, anxiety, some ocd, some sensory, off/on for years). Nobody ever bothered to test her for strep during these years (got fevers, but no sore throat, so all illnesses were presumed viral). I also don't know if her severe PANDAS "explosion" at age 7.5 years would have even happened if she hadn't had 2 tooth extractions (for orthodontic reasons) in the 1-2 mo. after the start of an untreated strep infection. Before the extractions (but after the untreated strep infection), she had significantly increased moodiness, tantrums, difficult behavior, anxiety...the full-blown OCD/anorexia wasn't until AFTER the extractions. Without the extractions, we would have probably just thought "she is being a very difficult child and we aren't great parents in terms of discipline", after the extractions, it was "think about long term care in a mental instituiton." In a sense, I'm grateful that the extractions allowed everything to come to a "head" so to speak so we could finally figure out what was going on (and even then, it took contacting over 20 health professionals before someone even suggested that strep might be involved.)

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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.

 

excellent points!

 

BTW...I want to hear pandas16's story too!!!!

Edited by EAMom
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EAMOM, You brought up a point that I have wondered about for months. My daughter had undetected strep with only symptoms being frequent urination,tantrums, moodiness for about a month. It wasn't until her 6 year molars started bothering her and Fall allergies started that she had her extreme exacerbation including anorexia (fear of choking), meltdowns, panic attacks, sensory issues, fear of dying in her sleep, etc.

These symptoms lasted for about 2 weeks, but once the molars came through the gums and allergy symptoms subsided, so did her Pandas symptoms. I almost canceled her doctors appointment because these symptoms were resolving on their own. I went a head and kept the appointment and mentioned to my doctor that my daughter had just exhibited almost every symptom of Pandas. She did a throat culture and sure enough it was positive. Within 10 days on antibiotics most all symptoms were gone. Was it the combination of the 3 separate issues that sent her into a tail spin?

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  • 2 weeks later...

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

 

My son had a sudden onset of tics, slight dystonia, mood liability and night fears. No frequent urination or any of these other symptoms that you mentioned. WIth anitibiotics he gets 90% resolution and there are only very mild tics left. He does however seem to get increases in tics about every 3 months along with some of these other symptoms and again they resolve about 90 - 95% when he is put onto antibiotics. We have never tried anything else yet as this regimen is working for us currently but it is usually about 5 days before I see a symptom resolution.

 

There is no other neurological diagnosis and my specialist said that in all the years of treating PANDAS, tics and TS my son's symptoms are one of only about 4 or 5 children that he believes are truly PANDAS. It is difficult to know if this is the case as this is just his perspective. He does work in PANDAS research and his specialist area is movement disorders with a focus on infection exacerbation.

 

I am curious if our PANDAS children are a small subset of children with tic disorders or if it is just easier to diagnose if the traditional onset is recognised with positive strep diagnosis at the first symptom exacerbation. It did take 3 months of different doctors though before a strep test was done which came out positive and then when ds was put onto antibiotics that was when we started to see symptoms resolve. I am worried about long term use of antibiotics though. Pandas 16 - were you on antibiotics long term and are there any residual problems associated with your long term treatment?

Edited by jules41
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I am new at this pannel and would like to share my eight year old son's condition. He had strep in February 10th and was given penicilin as a shot immediately. The same day his tics became intense and vocal tics emerged. One of his friend's mother mentioned the PANDAS condition. I immediately took him back to his pediatrician and we were referred to neurologist. Both acknowledged the condition but there was no treatment offer. After a month later, I took him back to his pediatrician and asked for another round of antibiotic treatment and blood test for allergies and antibodies in his system. His Anti strep come back 281.7 and another result is dnaise b 170 (I am not sure about the spelling of the second one) He is still taking his two week antibiotic treatment. I see no improvement on his tics yet. We are going back to the neurologist in April and will continue to check his antibodies in his blood.

I found out about this condition by chance. And it is all of my research and effort for any treatment. Now that I know it, I remember him getting sick during summer (he was with his grandparents)and his tics were intense for a while. Perhaps that was another episode.

Phalasmapheresis sounds like another option but it is scary to me. It has been very a very painful month. I would like to record his progress so that other parents may get some comfort as much as I get from all of your notes.

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