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Who here isn't entirely sure their child even has PANDAS?


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I'm confident my ds(7) has PANDAS. There really is nothing else that can explain what we see now...and the episodes we saw when he was a toddler. Of course, saying that I'm confident he has PANDAS does NOT make me confident in anything I'm doing. I hope the IVIG and abx work to heal him, but I worry about his future.

 

I'm paranoid that they're going to somehow put PANDAS...a physical illness...onto the Spectrum just so drs can say "see...we told you your kid was ASD" and continue prescribing meds for mental symptoms with a physical cause. I read autoimmune disease books, articles, web sites. I read Lyme books, articles, web sites. I read Mycoplasma books, articles, web sites. I read vaccine books, articles, web sites (higly recommend "The Virus and the Vaccine" if you can read & scream at the same time). I read immune system books, articles, web sites. I read organic food books, articles, web sites. I read A LOT! I have a little bit of info about a lot of things and am trying to piece together what I think makes sense (devoid of any medical background & only 1 year of college biology ;) ). I'm totally lost in this new world where up is down & down is up.

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SarhJane,

 

It's interesting that you're afraid of PANDAS being put on the spectrum. My pediatrician, who is very PANDAS friendly and open/forward thinking feels that it absolutely SHOULD be put on the spectrum. He sees it this way - Autism, as it is currently defined, is not so much a disorder, as a collection of symptoms. He feels that there may be several "types" of autism that are biological/infection related, and PANDAS falls into that group. (He cites the many people who say that they've "cured" their child of autism with various methods as likely PANDAS-like biological cases)

 

He would'nt be one to say "see I told you so - your kid is ASD" as much as he sees linking PANDAS to ASD as an opportunity for increased awareness, research as well as treatment opportunities (including therapies) that may be available to kids with an official ASD dx, but not a PANDAS dx.

 

Coming from an environment with an super awesome team of Dr's where I haven't met the resistance that most here have, I think it's interesting to see how that connection would make me optimistic of the possibilities, but would make someone who has searched long and hard for answers skeptical as another way for naysayers to dismiss the facts surrounding PANDAS.

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Here is an excerpt of an email I received a year and a half ago (Sept 2009) from one of the PANDAS doctors. It was 3 months after my dd's first IVIG.

 

"As I have gone over (my daughter) medical documentation I was not able to think of ANY OTHER condition that would result in her clinical presentation. If anyone has been a CLASSIC PANDAS, (my daughter) appears to be certainly one of those."

 

A year later we uncovered lyme & co-infections as well.

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SarhJane,

 

It's interesting that you're afraid of PANDAS being put on the spectrum. My pediatrician, who is very PANDAS friendly and open/forward thinking feels that it absolutely SHOULD be put on the spectrum. He sees it this way - Autism, as it is currently defined, is not so much a disorder, as a collection of symptoms. He feels that there may be several "types" of autism that are biological/infection related, and PANDAS falls into that group. (He cites the many people who say that they've "cured" their child of autism with various methods as likely PANDAS-like biological cases)

 

He would'nt be one to say "see I told you so - your kid is ASD" as much as he sees linking PANDAS to ASD as an opportunity for increased awareness, research as well as treatment opportunities (including therapies) that may be available to kids with an official ASD dx, but not a PANDAS dx.

 

Coming from an environment with an super awesome team of Dr's where I haven't met the resistance that most here have, I think it's interesting to see how that connection would make me optimistic of the possibilities, but would make someone who has searched long and hard for answers skeptical as another way for naysayers to dismiss the facts surrounding PANDAS.

 

Airial -- You have been so fortunate with your medical care and their broad, open-minded perspectives! And yes, I think that probably affords you some rose-colored glasses as compared to a lot of us. :P

 

With the exception of DAN! Doctors in my area, my experience thus far has been that you even BEGIN to mention Autism in a way which implies/considers medical interventions as anything other than a management tool (as in, any implication that there might actually be a "cure" for Autism), you are met with scorn and a hand help up in one's face basically saying, "Hold on there, Jenny McCarthy! Don't start with me . . . . !" I am constantly surprised by the ferocity of that response, actually. Like somehow their profession is threatened by the mere entertainment of trying to get to the root of autistic behaviors' roots. Daunting. :(

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Airial -- You have been so fortunate with your medical care and their broad, open-minded perspectives! And yes, I think that probably affords you some rose-colored glasses as compared to a lot of us. :P

 

With the exception of DAN! Doctors in my area, my experience thus far has been that you even BEGIN to mention Autism in a way which implies/considers medical interventions as anything other than a management tool (as in, any implication that there might actually be a "cure" for Autism), you are met with scorn and a hand help up in one's face basically saying, "Hold on there, Jenny McCarthy! Don't start with me . . . . !" I am constantly surprised by the ferocity of that response, actually. Like somehow their profession is threatened by the mere entertainment of trying to get to the root of autistic behaviors' roots. Daunting. :(

Absolutely! I'm all for tearing the "spectrum" apart. As soon as you find cause of the autism symptoms-get that sucker off the spectrum and treat it for the root cause= call it the disease that it is! Looking forward to the day when presentation of autistic symptomology becomes a matter of investigating the possible causes so it can be treated properly.

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I should add here (since I'm the one that brought it up), that my son is not autistic. The symptoms never matched up to the dx, but the drs did look at it as a possible explanation for his behaviors. We never thought that it made sense...especially when symptoms would remit. Waxing & waning of autism? I think not. And the drs didn't think it made sense or otherwise our son would've gotten the dx...he was basically evaluated 3 times (as late as last spring...that time it was via survey, BUT the symptoms were all over the place & luckily the dr had previous contact with my son). My son has also never been on pychotropic meds either, tho' the ped was pushing us to get him on an SSRI for anxiety, which was the dx he ended up with last spring because it was such a strange manifestation. I would've resisted SSRIs for a 7-yr-old despite anxiety. And the more I read about PANDAS now, the more I see the signs in the past that he very likely had early onset PANDAS.

 

So...that is my fear. That in order to EXPLAIN away PANDAS versus finding the cause & a cure, it will be lumped into a category, which for various reasons autism comes to mind as the most "logical" fit. IF that happens, and I really hope it doesn't, then parents may be given a "treatment" to try, but the ASD bias will also be there. So if that treatment doesn't work, then there's nothing that can be done about it since it's ASD. The fact that the prevalence of that condition continues to creep up in our nation's children is frightening to me. And that while much is likely being done behind the scenes, we don't see a lot other than certain protocols to treat symptoms. And if PANDAS ends up on the spectrum, I'm afraid it will fall off the map. Look at how vocal the ASD community is, and the evidence they point to for potential causes is consistently explained away. Meanwhile, more and more kids will end up with PANDAS or whatever it ends up being called because it's certainly easier to categorize a condition than it is to cure it. Treat it all you want, but eradication if possible, should be the goal. And Lord do not mention vaccinating for it! (And if an autism case IS cured, then it's likely said that it wasn't autism in the first place...and you know what I say to that? EXACTLY!)

 

I do keep peglem's comment from a while back that autism itself is a collection of symptoms...I'm paraphrasing. I think most people...WAIT...I KNOW most people don't look at it that way. I thank her for that wisdom. And I do believe there is such a thing as autism that is mysterious and unexplained. But now I also believe that not all of those with an autism diagnosis have autism...sort of like how now I don't think individuals with OCD & other alphabet soup dx's necessarily have a mental illness.

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Hi SarahJane - I'm coming to similar conclusions. I'm also tending to the idea that PANDAS belongs on a different kind of spectrum, along with other autoimmune conditions such as Lupus, Chronic Fatigue, Rheumatic Fever, Lyme, possibly Parkinson's, and Autism...

 

But on a practical level... My son was officially diagnosed with Asperger's when he turned 16 (sudden onset? Yeah right! We now know it's PANDAS!) That was after being assessed over the years by two audiologists, two speech pathologists, two psychologists and an optometrist and not one of them put him on the spectrum. (We did find auditory processing issues etc.)

 

I totally understand the fear. We debated long and hard about pursuing an official AS 'diagnosis', but decided it would provide him with some accommodations that he needed. We have since got a PANDAS diagnosis. I'm not at all sure that PANDAS would even be recognised by the educational authorities here, so I'm thinking we stick with the AS diagnosis knowing that will get him the accommodations he needs to complete his education. It ain't ideal but it's what we're going with.

 

Edit to say - I'm very sure ds has PANDAS. (And there's no lyme here.)

Edited by Ozimum
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I feel very confident that my daughter has PANDAS and she has been called a classic case by two doctors, BUT I am now equally confident that she has Lyme/Bartonella as well as PANDAS and six months ago I was quite confident that she did not have Lyme based on her negative test results as well as her positive response to Prednisone. As I learn more, what I am confident in changes. I am open minded enough to know that what I am quite confident in tomorrow, may differ from what I am confident in today. :)

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I totally understand the fear. We debated long and hard about pursuing an official AS 'diagnosis', but decided it would provide him with some accommodations that he needed. We have since got a PANDAS diagnosis. I'm not at all sure that PANDAS would even be recognised by the educational authorities here, so I'm thinking we stick with the AS diagnosis knowing that will get him the accommodations he needs to complete his education. It ain't ideal but it's what we're going with.

 

That's part of the idea of my pediatrician behind thinking that PANDAS should be put on the redefined spectrum - the $$ and opportunities for research are well organized and abundant. Not to mention, having that dx - while not a perfect fit, would open doors for opportunities, accomodations, treatments that a child needs but otherwise wouldn't be eligible for. Your son might not fit the AS dx perfectly, knowing now that it's PANDAS, but it allows him to get the services he needs in school! My son is very young still, but our pediatrician was suspicious of AS as well, noting that he was too young to officially dx though. After a year of PANDAS treatment, not a sign of AS remains.

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Regarding the autism, an a-little-bit-out-there-but-very-prominent lyme doctor believes 90% of autism is caused by lyme disease. He speaks as if he and another doctor have a bit of a track record of actually curing autism with lyme disease treatments.

 

Suspicion is always warranted regarding diagnosis that feel much more like a collection of symptoms than an explanation (such as autism is, one of many, really). It is such a shame the doctor's often feel their job is done when they reach that point. Perhaps all the medical school gives them a feeling that the books have all the facts, and no thinking and learning in the future is ever required?

 

Regarding the autism, though, that theory does fit with one of the autism theories that get brushed aside by the power-brokers--it's mercury poisoning, it's the vaccinations, or it's mercury poisoning from the vaccinations. We do here of the sudden onset of autism from vaccinations, so, for some people, that plays a major role. Vaccinations do supply a nice hit to the immune system, and someone with autoimmunity issues might react quite poorly. They also do, or used to (sorry, not up to date), provide some nice mercury. Of course, the mercury is everywhere, it is in every food we eat and air we breathe, to varying degrees, for sure. Heavy metal toxicity is part of lyme disease. My dentist likes to say, "borrelia + mercury = lyme", a little simplified, of course, but some truth in there.

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Michael,

 

I'll see if I can find the study that UCLA (I think) published last year. Amid all the hype of the "fraudulent" research in the UK that originally led to the link between vaccines and autism, there was new reasearch that confirmed the link, but it was limited to kids with some sort of mitochondrial DNA predisposition.

 

Don't quote me on any details, I'm not one that reads these studies easily, but I remember having a conversation with my pediatrician about it. The jist was that vaccinnes were directly linked to sudden onset of autism only in a subset children that already had a genetic predisposition for the adverse reaction. The kicker is, without doing all sorts of blood work and testing on a seemingly healthy kid, you'd have NO way of knowing prior to vaccination if your child had this predisposition.

 

My Dr. just ordered a full genetic workup on my son to see what it yeilds, so I'll have the perfect opportunity to ask him again. In the meantime, I'll see if I can track down the study.

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"After a year of PANDAS treatment, not a sign of AS remains."

Hi Airial95 - Whoohoo! We're aiming for that too! (I've been holding onto the thought of returning to our pediatrician with the our much improved son to say "bah humbug!" Mind you, if I never see her again it will be too soon!)

 

"Regarding the autism, an a-little-bit-out-there-but-very-prominent lyme doctor believes 90% of autism is caused by lyme disease. He speaks as if he and another doctor have a bit of a track record of actually curing autism with lyme disease treatments."

Hi Micheal...Wow! 90% - that is a really big statement from that doctor! If it was only that simple! Australia does not have any indigenous Lyme. All Lyme cases (very few) found here to date have been contracted overseas. So Australian kids on the spectrum are most unlikely to have Lyme, nor our PANDAS ds - otherwise I would most certainly have turned over that stone! That's not to say that Lyme couldn't be a contributing factor...it's just not the case here.

 

Last week I had coffee with an old school chum who's a doctor and I tried to tell her about PANDAS - she was very closed off. Tried to tell her about Biomed and how well it's worked with ds...didn't want to know. Maybe it just threatened how she sees the world? Can't see us meeting again :(

Edited by Ozimum
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"Regarding the autism, an a-little-bit-out-there-but-very-prominent lyme doctor believes 90% of autism is caused by lyme disease. He speaks as if he and another doctor have a bit of a track record of actually curing autism with lyme disease treatments."

 

Hi Micheal...Wow! 90% - that is a really big statement from that doctor! If it was only that simple! Australia does not have any indigenous Lyme. All Lyme cases (very few) found here to date have been contracted overseas. So Australian kids on the spectrum are most unlikely to have Lyme, nor our PANDAS ds - otherwise I would most certainly have turned over that stone! That's not to say that Lyme couldn't be a contributing factor...it's just not the case here.

 

That's the thing with statements like that, it's very likely true--in his world, in his experience. The trick is in sorting out how much it applies in your world, such as, Australia, maybe not much at all.

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