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


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That's sort of a complicated question, at least for me.

 

I think what I am less and less sure of is that the term "PANDAS," or even "PITANDS" is an appropriate one. What I am less and less sure of is that it might not be the case that ALL "mental illness" is actually a marriage of genetic susceptability and toxin/microbe that sets the genetics into motion. That 20 years from now, no self-respecting doctor will fail to test for infection when a patient suddenly turns up with OCD, TS, bi-polar, schizophrenia, dementia or severe depression.

 

My DS was diagnosed with OCD at 6, and all inquiries at PANDAS or strep were completely waved off, in part because he was asymptomatic for the strep in all classic ways. But then, at age 12, at a sudden explosion of the OCD that pushed his Y-BOCS score well beyond a 20-point jump, I pushed for PANDAS treatment. And he responded remarkably well to antibiotics initially, and continues to respond, though the response grows more and more muted/subtle, and the setbacks seem to get deeper and more difficult to climb out of. We're exploring other underlying causes and potential treatments, though a part of me feels that puberty is at least partially to blame for the dramatic nature of these exacerbations, and that hormones are not just confusing his mind and his emotions, but actually driving inflammation as well. At the moment, a combination of abx and ibuprofen are keeping him functional, though not subclinical.

 

So, is he "PANDAS" in the classic sense, or is he OCD? Well, if anti-inflammatories and abx make him better, then he must be PANDAS, mustn't he? But what if the "residual OCD" sticks around for the rest of his life? Does that mean he wasn't PANDAS after all? And then again, who's to say that abx and anti-inflammatories wouldn't help, to some degree, many, many people suffering with OCD, tics or other "mental" conditions, but they just haven't thought to try it? Now they're discovering that SSRI's have anti-inflammatory properties, so one classic pharmacological response to both OCD and depression may work, in part, for reasons completely other than serotonin modulation.

 

Long way of saying, I guess, I see "PANDAS/PITANDS" everywhere. If it were up to me, every person with any "mental illness" would be tested for infections and immune function, and then be made subject to a trial of abx and inflammatory treatments and monitored carefully for their response. Oh, if I only ran the world . . . . . [sigh] ;)

Edited by MomWithOCDSon
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I am 100% sure our daughter has PANDAS. Her symptoms started literally overnight in January of 2008. She went to bed on a Wednesday night with no symptoms but on an antibiotic for a strep infection. She woke up consumed with fears and anxiety the next morning. This continued to ramp up over the next week or two. Looking back, she had minor exacerbations after strep infections from the time she was 4 on. We just thought she was going through "a phase" until the major onset at age 8. We are a bit over two years post serious exacerbation. With antibiotic treatment at the time of onset and now with a M/W/F course of azith prophylactically, she is symptom free. She still cleans a bit more than an average 10 year old, but that behavior was learned during her exacerbation and she is actually helpful around the house with keeping things in order. When we tell her to stop, she is able to. We see small flares if she is exposed to strep, even on antibiotics. We saw a flare in October when her brother had mycoplasma and we saw an uptic in cleaning this winter when her friend had strep and she contracted it. Her strep this winter was just a blip on the radar as she was on a prophylactic antibiotic and once we knew she had strep, she was put on augmentin. She is doing quite well now -- happy, well adjusted, enjoying ballet and jazz, school, and friends. She doesn't remember a lot of what happened during her time of extreme illness, thank heavens. There is definitely hope!

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I think what I am less and less sure of is that the term "PANDAS," or even "PITANDS" is an appropriate one. What I am less and less sure of is that it might not be the case that ALL "mental illness" is actually a marriage of genetic susceptability and toxin/microbe that sets the genetics into motion. That 20 years from now, no self-respecting doctor will fail to test for infection when a patient suddenly turns up with OCD, TS, bi-polar, schizophrenia, dementia or severe depression.

 

Amen, MomWOS! I completely agree, as does Dr. K: he told us he believes we're on the brink of a paradigm shift in the treatment of mental illness - especially pediatric mental illness - that will transform healthcare. I think that's why the "PANDAS Hypothesis" has experienced such violent opposition. It has the potential to invalidate some of the traditional psychiatric treatment regimens, as well as the strict separation between neurology and psychology/psychiatry, and that seems to upset a lot of docs who are comfortable with the "old paradigm."

 

As far as our ds goes, I'm 100% sure he has PANDAS in that GAS is a clear culprit in his exacerbations. With all of the myco P. and Lyme revelations of the past year, though, I'm no longer 100% sure that GAS is the only culprit.

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I'm not sure of anything. PANDAS seemed to fit better than anything else. After the alphabet soup of psych diagnoses by doctors who did not account for the physical symptoms, I started to push for answers on my own. DS7 has a history of high ASOs over this past year (all in the 500s, with a baseline of 27 last year). CamK 176; elevated anti-dopamine. Dramatic positive reponse to regular-dose antibiotics. Repeat strep infections, including scarlet fever. But PANDAS still did not account for all symptoms. Since upping the antibiotics to high-dose, DS has many many more lyme symptoms - strange rashes, fevers, numb feet, electric shocking sensations, etc. I also found out I'm positive for lyme. I was beginning to wonder if this was all lyme, all along. Then 2 weeks ago all 3 boys got strep throat and DS7 went haywire. So strep is definitely a major trigger. He had a huge exacerbation when he turned 3 and we moved, but I honestly can't say there was ever a sudden onset. He's had major issues since he was born. Sensory, OCD, anxiety, all there since birth, with clear episodes. For example, when he was 15 months he would only wear green clothes. He would rip off anything that was not green and throw a fit. Then he would get something green from his dresser and bring it to me. We thought it was funny then. If we only knew...

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I think what I am less and less sure of is that the term "PANDAS," or even "PITANDS" is an appropriate one. What I am less and less sure of is that it might not be the case that ALL "mental illness" is actually a marriage of genetic susceptability and toxin/microbe that sets the genetics into motion. That 20 years from now, no self-respecting doctor will fail to test for infection when a patient suddenly turns up with OCD, TS, bi-polar, schizophrenia, dementia or severe depression.

 

Totally absolutely completely agree!

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My son who suffers the most is definite PANDAS. I was told his case was so classic it was boring (although it took 7 1/2 years to get a diagnosis that made sense). I was so relieved to finally have THE answer. He would be technically PITAND since he reacts to all types of bugs. He responded great to PANDAS treatment initially then we lost him again. I then found out that he is also positive for other infections as well so I was wrong and so was the doctor. He looked so classic PANDAS with the onset and symptoms but come to find out PANDAS is only one piece of the puzzle. I recommend, based on my experience, to rule in or out other infections right away so the proper treatment is started ASAP. I sure wish I would have done that ...... I often think of how different life would be for both of us if I had. Hindsight is 20/20!

Edited by dabel
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I wasn't sure whether to put my two cents in "is it ever too late" or this thread, but I really wanted to piggyback on the idea of a protocol of ruling out infectious/immuno-dysfunction causes as a starting point in mental health. In my eyes, that is the ultimate goal. Even from our tiny sampling on this board, finding factors that are common to all of our children has turned up empty; this is bigger and we all feel it. The incidence of children presenting with behavioral/cognitive/learning issues in our schools continues to explode so much so that soon all teachers will need to be dually certified general/special education.

 

I don't think ALL mental illness stems from infection/immuno-dysfunction. Certainly individuals can experience traumatic events that change them forever and living through PANDAS/PITAND symptoms for an extended period of time could count as a traumatic event! I know it has changed me forever, so I'd be naive to think that even if dd was "cured" that this had no impact on her development or self image. And perhaps, in the end, a positive impact, that she is a survivor and how to separate those who genuinely care for you from the fluff.

 

But the idea that our children are simply being conceived with more and more serious mental illnesses, younger than has ever been previously reported in the past, that they are unlucky in the gene pool of life....c'mon medicine, wake the heck up!!!! You're being outsmarted by microbes.

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We are 100% sure of PANDAS. Never had high titers though, but several positive swabs.

 

But that has never stopped us from questioning if that's really what's going on. (which is why I'm posting) As my son continues to improve, I tend to start to wonder the same things all of our wonderfully "supportive" friends and family have - maybe I am just reaching, maybe it is all my fault, bad parenting, etc...(this especially creeps in as the ERB/CBT starts to work because in my warped mind somehow I should've known that it was a "simple" as changing how we dealt with him boiling it all down to parenting!)

 

Every time those nagging thoughts seem to be at their hieght - BAM! We're hit with strep or a confirmed exposure, and all sorts of strange starts up again. I was just having those doubts two weeks ago when he started peeing alot, wetting the bed, two new tics (that were very minor, only dad and I noticed at first) and then the hopping through the kitchen. I was convinced that the tics were just my imagination, the hopping was him playing hopscotch on the tile (something my daughter does often for fun) and the peeing - well, he's 3, they have accidents. When he added the clapping between hops, we thought to get him swabbed. I was convinced it would be negative and all of this was my mind running wild. Nope - it was positive.

 

I look at this strep infection (which has been relatively mild on the rages and tantrums thankfully) was God's message to stop second guessing and that we're on the right track and keep up the good work. I'm convinced that's why it's been an "easy" infection for us - just a few issues, and barely one tantrum a day.

 

I guess my point is, it doesn't matter how sure any of us are, we probably all still have our nagging doubts.

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I wasn't sure whether to put my two cents in "is it ever too late" or this thread, but I really wanted to piggyback on the idea of a protocol of ruling out infectious/immuno-dysfunction causes as a starting point in mental health. In my eyes, that is the ultimate goal. Even from our tiny sampling on this board, finding factors that are common to all of our children has turned up empty; this is bigger and we all feel it. The incidence of children presenting with behavioral/cognitive/learning issues in our schools continues to explode so much so that soon all teachers will need to be dually certified general/special education.

 

I don't think ALL mental illness stems from infection/immuno-dysfunction. Certainly individuals can experience traumatic events that change them forever and living through PANDAS/PITAND symptoms for an extended period of time could count as a traumatic event! I know it has changed me forever, so I'd be naive to think that even if dd was "cured" that this had no impact on her development or self image. And perhaps, in the end, a positive impact, that she is a survivor and how to separate those who genuinely care for you from the fluff.

 

But the idea that our children are simply being conceived with more and more serious mental illnesses, younger than has ever been previously reported in the past, that they are unlucky in the gene pool of life....c'mon medicine, wake the heck up!!!! You're being outsmarted by microbes.

 

Jag,

 

I couldn't agree more about this being bigger that we really think! I also think a lot of the "mild" anxiety issues and other subclinical things that people suffer from are going to be related to infection/inflammation too!

 

However, I believe that "mental illness" is going to probably end up being multi-pronged approach. There is validity in the idea that the brain's neurotransmitters are low or out of balance. Otherwise, I don't think we would see a large percentage of "normal" mental illness responding to psych drugs.

 

I personally think eventually mental illness is going to fall under something like these categories:

 

1. The majority of people are going to have chemical imbalances in the brain, but medicine will know enough to find the cause -- poor lifestyle, malabsorption/quick absorption of proper nutrients, hormonal imbalances, -- you get the picture.

 

2. A smaller group is going to be recognized as having an infectious trigger or immune mediated trigger--autoimmunity and inflammation. Not just from infection triggers, but also allergies, and things like cysts (don't forget about the girl who got schizophrenia from a teratoma cyst on her ovary)

 

3. Physical trauma to the brain

 

4. There is still probably a lot of unknown information yet--what about direct infection in the brain?, or an over abundance of midi-chlorians?--LOL!

 

5. I think, finally, the "traumatic event/bad parenting" angle of mental health is going to be thought of like strep is now. -- "Everyone, has a traumatic things happen to them, how can we prove that this caused their problems?" I think medicine will be asking, what does this person have in categories 1-4 that have made it much more difficult for them to recover from the traumatic event?

 

These are my hopes. That Sigmund Freud's ideas, will take up as much space in a psych text book that PANDAS/PITAND does now. Of course I am being facetious--but I'm sure you all know where I am coming from.

Edited by Kayanne
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Momcap- can you discuss what type of testing and symptoms has led you to believe you have Lyme?

Thanks!

 

Sure! I used IGeneX this past December. My IFA was 1:140 (indeterminate). IgM is positive (bands 23-25, 31, and 41). My IgG is negative (positive bands 30, 41, 58 and IND 39).

 

Symptoms: frequent (non-stop) illness when I was 12-14, severe back pain that never stopped day or night for several years and would radiate into my ribs, stabbing foot pains, bone-ache in my forearms, depression, elevated markers for JRA but not high enough to diagnose, Relfex Sympathetic Dystrophy (RSD) following a broken bone, OCD, panic attacks, rage attacks, manic on SSRI, Raynaud's syndrome, a "brain fog" that I would describe as feeling like I'm dreaming and not remembering where I'm going/what I'm doing, etc. This was all a major change from my golden childhood - happy, bright, straight As, no issues at all. Because of the age of onset being puberty I ended up being diagnosed bipolar.

 

In my late teens I went on tetracycline for over a year for acne. After that I was pretty much better. I went off the psych meds and my mood was level! Since my early 20s I've been well, with the exception of during pregnancies. Once in a while I get the deep pain in my forearms and I feel like I'm in a fog, but it passes after a day or two, and I feel better again. I wouldn't have even thought about it anymore if it wasn't for DS7 having such troubles - physical and mental.

 

I think I have lyme but my immune system got a hold of it after I was on antibiotics. I'm not 100% sure of anything though, and haven't even seen an LLMD yet. This is just my experience and my thoughts as I'm trying to unravel the mystery of DS7.

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