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Clarification needed on Pandas symptom


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Hi all, I think the more I read the more confused I become. Okay, in a nutshell, my son began tics and fears quite suddenly the end of 2009. May or may not have been related to his H1N1 and flu vaccination prior to that. The tics are about the same....a few have been added and he switches from one to the other but the eye tics remain the same. Has a soft 'hmmm' vocal tic after eating or watching T.V. once in a while. Here's my question...it's been 10 months of this but there has not been a period of time when he was in remission. I thought one of the symptoms of Pandas was periods of no symptoms. Or is it to soon to have a period of remission. He was on abx (400 mg Aug. 2x a day)for 3 weeks prescribed by our Pediatrician and we couldn't tell if it helped or not. Okay, here is another question...is Pandas for life or does it get better with age kind of like Tourettes?

 

Thank you in advance, some answers will leave a little room in my head for more confusion :)

 

Trish

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So you know your note alone, I've always been confused about the episodic nature as well. Once my daughters symptoms started in the fall of last year (when she was 7), they only got worse through February/March (when she improved with f14 days of abx, then backslid, then went back on abx and worked her way back to where she is now - about 95%). She's had slight slippage and rebound's since then, but no "major" episodes. Maybe her episodes started earlier in her life and went away, but we just never recognized it and thought whatever behaviors she was showing were "phases" because they didn't seem age inappropriate at the time. Sorry I can't provide an answer. But miserly loves company, so I thought I'd chime in.

Kara

 

 

I thought one of the symptoms of Pandas was periods of no symptoms. Or is it to soon to have a period of remission.

 

Trish

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Yeah, it's all confusing, isn't it?

 

The "classic" PANDAS presentation is episodic and sawtoothed: the afflicted child has an abrupt, dramatic increase in symptoms after a new strep infection, then very gradual improvement (but maybe not back to 100%) before another infection triggers another drastic resurgence. Unfortunately, the clinical gurus have found that few kids actually present with this classic pattern. Our son didn't: he essentially had "chronic" symptoms that did not improve without major treatment intervention (high-dose abx, steroids, IVIG).

 

Dr. T actually showed a really cool slide with several graphs on it at his IOCDF presentation. He showed that some kids have this classic "sawtoothed" pattern, but others may be exposed to infection so constantly that the flares become so close together that there aren't really any visible "remission" periods. So if there's a carrier in the house, or if there are co-infections (something chronic other than strep), or other immune deficiencies, etc., the graph of the child's symptoms can make them appear chronic. Makes diagnosis confusing for most docs, and this probably contributes to the damned "controversy" around PANDAS / PITAND.

 

And does PANDAS resolve with age / post-puberty? That's the question all of us parents would love to see answered! There is some "anecdotal" evidence that this is the case, but then again, we have members on here (EmersonAilidh, emmalily) who are (courageously!) fighting this disorder in their mid to late teens or beyond. Unfortunately, the studies on this haven't been done or published, and nobody really knows. We just hope!!!

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emalily,

were your symptoms worse before getting treatment at 19? how are you doing now? did it make a difference? did your symptoms or illnesses get better as you aged? thank you.

 

Hi Josey,

My symptoms made me non-functional. I literally just sat all day during the worst of my exacerbation at 17. I had some small OCD things around age 5 (after a very high fever following a vaccination) but they disappeared. At 14 I started with a lot of food sensitivities, always tired, always uncomfortable. OCD grew and peaked at 17. Major improvements now since starting treatment. I'm being evaluated for abdominal epilepsy right now, but what I think are "seizures" are rare occurrences when I'm on antibiotics (augmentin xr 1000 2x day; and recently a 28 dose of biaxin for high mycop IgG). As I feel better I'm working on getting back to living like a normal person, so I'd definitely say it's an improvement.

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Thank you for your replies. I am so thankful you guys are here. I admire you tremendously from all that you have gone through and are still going thru. Your strength is a true gift. I am taking my son to St. Petersburg Monday to hopefully begin the study she is doing there regarding sudden onset of tics and/or OCD in children. I'll keep you posted how it goes.

 

Trish

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Hello Cory! I'm the other patient-teen on here. :D

 

Okay, I'm gonna try to keep this as short & sweet as possible, although I'm not very good at that, hahah. I've had tics since I was four & anxiety/OCD for as long as I can remember. My tics were all minor, mostly in my mouth, & the anxiety/OCD was manageable, so we didn't really think much of it until at eleven years old, about a year after a tick bite, I had my "symptom explosion", where ignorable tics became debilitating & explosive, where panic attacks came every single day, & when my OCD was so bad that it landed me in the Special Ed room off & on throughout my sixth grade year. Just like EmmaLilly, I was completely nonfunctional at this time. I had the waxing & waning initially, but as time went on it gradually grew less & less apparent until the brief periods of remission just went away. I am now fifteen years old in my sophomore year of high school, & eleven years post-suspected-onset, it's thought that I've fallen into chronic P.A.N.D.A.S., but it cannot be said for sure because I've tested positive for Lyme Disease as well five whole years after the tick bite. I've received no treatment, & I see my case as a cautionary tale, in all honesty. Some of my symptoms, like the tics & OCD, have improved dramatically without any treatment besides pharmaceuticals under other diagnoses (which did just about NOTHING positive for me). Others, like my Narcoleptic symptoms & brainfog, which could also be attributed to Lyme (like I said, it's a little blurred :/), have only appeared after all pharmaceutical treatment ended & have all waxed & waned fairly noticeably, but never to the point where they are ignorable or "doing well".

 

My first noticeable period of remission was RIGHT at the mark where I was supposed to get diagnosed with Tourette's, right around the eleven month mark post-Symptom explosion. There's no right or wrong timeline for the ups & downs, all of us are different. & as for the age thing, that question pretty much has the same answer. There is one member on here named MomTo2Pandas who went untreated for about two decades, if my memory serves me right (which it rarely does, hahah), & she made a complete recovery. If you get treatment (antibiotics, PEX/IVIG, steroids... Whatever works for your kids), chances are they'll do just as well as her.. :) <3

Edited by EmersonAilidh
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Hi Trish, Did your son have Strep with the initial sudden onset? When the sudden onset happened for my son (6 yrs. ago) he had abx for 10 days. It was enough to take the very obvious PANDAS/SC type symptoms away and left us with what I call residual OCD. That is why he was misdiagnosed for many, many years as OCD. If your son has PANDAS, I think he needs to be on a high dose abx for long term, at least a year. Then prophylactic after that. The longer this goes on and the more exacerbations the child has the harder it is to treat.

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We don't know if my son had strep or not, his sister did around that time. It seems odd that he wouldn't get it since they often sleep together on the weekends on the couch bed in the den so they can 'have a sleepover' and stay up and watch T.V. But then again, when he was 3, he had double pneumonia with ear infections and had NO symptoms other than grumpiness and not sleeping very well. He didn't cough, sneeze, nothing. I finally took him in because of the sleeping and the Dr. discovered it. He was hospitalized for 4 days. He's just one of these kids who don't really get symptoms to alert you somethings wrong. It just hits full force like the night he woke up and couldn't breathe......he suddenly had an upper resperitory (sp) infection. Also, on occasion he has been running hard and playing and would start having a hard time getting us breath. The Dr. said it couldn't be asthma because if it were asthma.....he would not have been able to breath at all. That made no sense to me. Anyway, we go to Dr. Murphy in St. Petersburg tomorrow to begin the trial and I really hope he gets the antibiotics and not the placebo! A new tic has evolved and it's pretty constant. Did I mention we have been GFCFSF for a few months now and his symptoms seemed to have gotten better until this new tic occured and the old tics came back also. Would this be considered a 'remission' although the tics never went away totally? On another note....my daughter has always had good vision. Suddenly this year, she said she couldn't read the board at school. The first examination showed she had something going on with her retina, the specialist said it appeared to be a non-malignant tumor on her retina, we go to the Retina Center Tuesday to find out even more. Since both my children had the Flu vaccinations last year and my son's symptoms started right after....I'm wondering if their is a relation between that and my daughters new problem!

 

Trish

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We don't know if my son had strep or not, his sister did around that time. It seems odd that he wouldn't get it since they often sleep together on the weekends on the couch bed in the den so they can 'have a sleepover' and stay up and watch T.V. But then again, when he was 3, he had double pneumonia with ear infections and had NO symptoms other than grumpiness and not sleeping very well. He didn't cough, sneeze, nothing. I finally took him in because of the sleeping and the Dr. discovered it. He was hospitalized for 4 days. He's just one of these kids who don't really get symptoms to alert you somethings wrong. It just hits full force like the night he woke up and couldn't breathe......he suddenly had an upper resperitory (sp) infection. Also, on occasion he has been running hard and playing and would start having a hard time getting us breath. The Dr. said it couldn't be asthma because if it were asthma.....he would not have been able to breath at all. That made no sense to me. Anyway, we go to Dr. Murphy in St. Petersburg tomorrow to begin the trial and I really hope he gets the antibiotics and not the placebo! A new tic has evolved and it's pretty constant. Did I mention we have been GFCFSF for a few months now and his symptoms seemed to have gotten better until this new tic occured and the old tics came back also. Would this be considered a 'remission' although the tics never went away totally? On another note....my daughter has always had good vision. Suddenly this year, she said she couldn't read the board at school. The first examination showed she had something going on with her retina, the specialist said it appeared to be a non-malignant tumor on her retina, we go to the Retina Center Tuesday to find out even more. Since both my children had the Flu vaccinations last year and my son's symptoms started right after....I'm wondering if their is a relation between that and my daughters new problem!

 

Trish

 

I don't know much of anything about vaccines, but if you want to know more about that whole connection I'd message Priscilla. There's actually a discussion on here from a couple days ago about the flu/H1N1/MMR shots. I haven't heard of any eye/vision problems with P.A.N.D.A.S., but who knows.

& St. Petersburg, like in Russia?? Wow! I hope he gets the abx too. :)

I'm asymptomatic too. I've only EVER had two negative strep cultures, both within the past twelve months. I was always at the doctor quite often even pre-P.A.N.D.A.S. diagnosis (gastrointestinal problems, mouth problems.. I was just a sick kid, haha) & my pediatrician caught on & started testing me for GABHs strep every time I came in. Except for these past two, every single time I was tested I was positive, even if I felt perfectly fine. I switched pediatricians when I was in the third grade, & upon seeing one of my test results in the sixth grade (RIGHT after my "symptom explosion") she said it was the worst infection she had ever seen. But, I felt just dandy (in relation to strep). No sore throat, no swollen glands, no fever, no rash.. Nothing. Just because the symptoms aren't there, doesn't mean that the strep can't be. Lots, I'd probably go so far as to say MOST, P.A.N.D.A.S. kids are just on the sick side. I've had upper respiratory infections, bronchitis, strep (obviously, haha), swineflu, some kind of Mycoplasma infection, & God only knows what else too many times to even count. PITAND is basically P.A.N.D.A.S. associated with an initial infection other than GABHs strep, but I'm not the one to ask about that & I don't know who is. :/

 

Little edit:

GFCFSF, I know gluten & casein, but what is the S? I've been a strict vegetarian since I was nine (about seven years now), & I've been gluten-free for about four months now. I don't eat milk & I rarely eat eggs. The only way that my dietary restrictions have improved my symptoms has been in relation to gastrointestinal problems, which is common among P.A.N.D.A.S. kids. I can't say that it's done much for any other of my symptoms, but I definitely bet that it could help! :)

Edited by EmersonAilidh
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