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Does "Sudden Onset" Criteria Measure Up?  

62 members have voted

  1. 1. How did you or your child's PANDAS make itself known?

    • Literally overnight onset -- one day he/she was fine, the next he/she was a mess!
      21
    • Overnight exacerbation, but had exhibited previous signs or "quirks."
      18
    • Previously received another diagnosis (TS, OCD, etc.), but increase or exacerbation in behaviors brought us to PANDAS.
      11
    • Nothing appeared "sudden" at all (either initially or in exacerbation), but symptoms/behaviors overall point to PANDAS.
      4


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I chose previously diagnosed with ocd but an exacerbation brought us to pandas.

 

My dd was a very carefree child previous to the late summer/ early fall of the year she turned 10. I can point to that fall as a sudden onset but I can't pinpoint a day. It all started with worries that were out of character for her and stomach aches that made her clingy and want to sleep in my bed.

 

after therapy and a diagnosis of ocd and later meds when we she was miserable and nothing was helping, she had a 6 month period with very few symptoms. A raise in meds gave us about another year and a half of mimimal symptoms. That brings us to this last summer/early fall when she became completely incapacitated and we learned about pandas.

 

Antibiotics have helped, Augmentin, Zith, and now Biaxin, but she's never gotten close to to baseline again. We're now pursueing IVIG.

 

Angela

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For us, the crescendo was a sudden onset, went to school fine on Feb 1 '08, but by 10am, school called that DS (now14) would not quit spitting, it was the first tic we had ever seen. Also has a dx of autism. He had a horrible strep infection we were having a hard time getting rid of, starting on Dec '07. I have never heard anyone having this particular tic, and not to the level that we had...or at least, I hope. Believe me, it will definitely seperate you! But in hindsight, that is when things began to unravel...it gave us some answers to the constant weird regressions over the years...mainly OCD but the strange movement disorder thing. So not sure how to answer the poll....sudden onset, yes....but maybe not, it may have been excerbations for years too.

 

 

 

Spitting was one of my son's first tics, and perhaps the most problematic when in public. Out the car window, on a sidewalk, in a store, in the living room on the carpet, at school, ....

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DS9s onset 4½ year ago was even more sudden than "overnight" - that is 3½ hour.

I left a happy and in every way normal boy (with the second of two diagnosed strep throats in a month) in the kindergarten in the morning and when I picked him up only 3½ hour later I met a total changed boy with symptoms he had never had before : lots of tics, spitting, crying and screaming that he couldn´t stand the thoughts that he had and that he only wanted to die, kicking, biting, sniffing, handwashing all the time, frequently urinating, not being able to touch anything or anyone - not even himself, afraid of germs, headache, lightsensitity, seing floaters, sudden separation anxiety ... etc. etc. :-(

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...it would be helpful if someone could fairly quantitatively describe what "typical waxinng and waning of OCD symptoms" looks like, so that a comparison between that and "episodic onset" of PANDAS symptoms could be made...

...So, IF a direct relationship to an infectious agent ... is not identified, is there any real, established ...difference between a PANDAS exacerbation and an OCD waxing? Or is it perhaps SO common for PANDAS OCD to masquerade as "standard" childhood OCD ...

 

 

B) Ah, there is the rub! Good questions--let us all know what you find out!

 

For us, the difference became clear only with differentiated response to different treatments--

For example, the typical CBT (cost us thousands) had very limited effect...In contrast, antibiotics and steroids had a dramatic effect, time and again....

 

As far as I have ever heard, "typical" childhood OCD is not relieved by anti-inflammatory treatments--

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We were pretty overnight. He was always laid back and very mellow, when other children would hit and bite him (which seemed to happen often) he wouldn't even retaliate, just cry and go to the teacher. One day, he bit 2 different kids in one day, unprovoked, and was violent and aggressive all day. This went on daily (increasing in severity) for months. But he went from being a sweet mild mannered child to Damien - literally in the blink of an eye.

 

What kept us from looking for a diagnosis for so long is that we all (including the teachers) kept writing it off to the "terrible twos" coming on, and after all, he'd been bitten and hit by other kids we just thought he was picking up that behavior. It was after a family trip from ###### to Mexico (thank God we brought the babysitter!) and the teachers at school also getting the same feeling that we really thought somehting might be wrong.

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...it would be helpful if someone could fairly quantitatively describe what "typical waxinng and waning of OCD symptoms" looks like, so that a comparison between that and "episodic onset" of PANDAS symptoms could be made...

...So, IF a direct relationship to an infectious agent ... is not identified, is there any real, established ...difference between a PANDAS exacerbation and an OCD waxing? Or is it perhaps SO common for PANDAS OCD to masquerade as "standard" childhood OCD ...

 

 

B) Ah, there is the rub! Good questions--let us all know what you find out!

 

For us, the difference became clear only with differentiated response to different treatments--

For example, the typical CBT (cost us thousands) had very limited effect...In contrast, antibiotics and steroids had a dramatic effect, time and again....

 

As far as I have ever heard, "typical" childhood OCD is not relieved by anti-inflammatory treatments--

 

 

It's the y-boc scale that measures OCD. Swedo has a great presentation that she gives that was one of a few light bulb moments for me - LLM has that one - hopefully she will post the link, or I'll pull it up at work tomorrow. Basically, Y-boc measures symptom severity. There was a great thread about this recently. Sudden onset OR exacerbation is what Swedo (and others) talk about. Waxing & Waning means a 5-10 point swing over a few months. Your child with traditional OCD might move around during a few months within a range of severity. However, for the PANDAS child, you see exacerbations of 17 (I thought this was 18, but I see Buster noted 17 earlier today) plus points on the y-boc scale in a day to about 2 weeks. This is part of the "possession" theme we see a lot here (although not all of it) - the child changes from who they were, in a matter of days. I don't advocate for this being "essential" especially given age of onset, but it is certainly a hallmark of the disease for many. I'll comment on our expeience in the next post.

 

Having a professional ERP therapist evaluate y-boc swings for your child can be one of many diagnostic tools that you can use to differentiate PANDAS from traditional OCD. A child with traditional OCD or sensory issues can then get PANDAS. They are not mutually exclusive. A subclinical OCD situation can suddenly turn into a nightmare. So to me, points 1 and 2 are the same thing - they both are classic PANDAS. (edit - actually, as I reread this, I think that 1, 2, and 3 are the same thing - the only difference is how it is recognized or diagnosed - but the timing of diagnosis does not change the fact of the initial onset/exacerbation). And it is one of the reasons for considering both ERP therapy & medical intervention. Treatment on both fronts, if available, can help the entire family deal with OCD as well as healing the child. If you child did have underlying OCD, they would still need medical treatment if they get PANDAS.

 

I HATE the words "wax and wane". Those words made me angry enough to yell at a few health care professionals in a dark time. To me, those are LAZY words. Define the illness and you find the way to health.

 

On a side note, another things that health care professionals can really lead parents astray about - ERP is a sub-category of CBT but they are NOT the same thing. This was another learning that nearly drove me mad. Only ERP therapy will help a child with OCD. Asking a therapist if they do CBT will get you a much wider pool of therapists - but will NOT mean that they they have a clue about how to do ERP therapy for the child. If you ask what method a therapist will use to help a child with OCD, and they don't say ERP therapy in the first 2 sentences, run for the hills! A good ERP therapist can adjust the technique to accomodate any age child. And seriously, it is very hard for a young child to do CBT - it's fine to do some, but the advanced techniques here (letting it float away, for example) are very advanced for kids with pediatric onset of severe OCD. Also, your ERP therapist can comment that your child may have PANDAS, but they are NOT docs and cannot prescribe abx, IVIG, etc - you need a doctor for this. I recommend the doctor first, and then the ERP therapist if you are dealing with something that does not vanish the way it came - as those of us that have fought for far too long, or who have children that were misdiagnosed for some time, may find to be true - the "sticky OCD" after medical treatment, that is minor but still frustrating.

Edited by Meg's Mom
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I voted for 1 - at age 3.5, totally normal kid, if a little sensorily sensitive - overnight onset of severe OCD, hand-washing, seperation anxiety, fear of choking etc. We were VERY fortunate to get an ear infection at the same time, so abx, all symptoms gone in a month. After ear tubes, no further exacerbations until similar sudden, debilitating OCD onset at age 6.8. This lasted about 3 months. Then she was back to us by about 90 - 95%. Then it gets confusing, as she is fine for 5 months, and then starts a slow build for another 5 months until things were rough but not crazy, and then another exacerbation on top of that to "possession" range again that lasted about 3 months. That last 8 months really threw us off, until the OCD vanished as fast as it came, with Prednisone, and a PANDAS diagnosis at about month 7 and a half.

 

Had the last 8 months been more of our original onset, we would have been much more confused, so I can completely understand why the onset at an early age might be confused with a long term issue vs an exacerbation upon exacerbation that begins to build upon itself, and never remits to 100%.

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It's the y-boc scale that measures OCD. Swedo has a great presentation that she gives that was one of a few light bulb moments for me - LLM has that one - hopefully she will post the link, or I'll pull it up at work tomorrow. Basically, Y-boc measures symptom severity. There was a great thread about this recently. Sudden onset OR exacerbation is what Swedo (and others) talk about. Waxing & Waning means a 5-10 point swing over a few months. Your child with traditional OCD might move around during a few months within a range of severity. However, for the PANDAS child, you see exacerbations of 17 (I thought this was 18, but I see Buster noted 17 earlier today) plus points on the y-boc scale in a day to about 2 weeks. This is part of the "possession" theme we see a lot here (although not all of it) - the child changes from who they were, in a matter of days. I don't advocate for this being "essential" especially given age of onset, but it is certainly a hallmark of the disease for many.

 

Thank you all for the feedback and the poll participation. And this is the nutshell I must've missed in previous threads somehow.

 

Plus, frankly, I'm distraught that, despite DS definitely exhibiting these broad swings in Y-Boc during exacerbation, none of our paid professionals were prepared to step forward and say anything along the lines of, "This is extreme. This is unusual. This is not in keeping with what we generally see in the typical OCD child." B)

 

Thanks now to you, I have a quantitative tool I can use at home (if the professionals don't see the point, even once I've made a fresh issue of it), and I'll continue to keep tabs on his improvement or exacerbations so that we can continue to move forward!

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For us, the difference became clear only with differentiated response to different treatments--

For example, the typical CBT (cost us thousands) had very limited effect...In contrast, antibiotics and steroids had a dramatic effect, time and again....

 

As far as I have ever heard, "typical" childhood OCD is not relieved by anti-inflammatory treatments--

 

Yes, I get that and our experience would agree, as well. During this latest exacerbation, no amount of therapy (ERP) or psych meds helped one iota; it took the antibiotics to bring him back into the real world.

 

But he's been dealing with the OCD behaviors for many years prior to abx treatment, and I am somewhat concerned that there may have been some permanent damage in those early, formative years that PANDAS treatment of any sort may not be able to 100% undo. So we continue with ERP and we do see gains attributable to that, now that the abx have given him back some leverage against many of the most insidious OCD behaviors.

 

So, as he's asymptomatic for strep, I'm trying to figure out the real difference between an exacerbation and a "wax and wane," particularly if he's never entirely OCD free and gets better at "hiding" some of his behaviors as he gets older. I'd like to think I could get in there again with aggressive PANDAS treatment if his OCD cranks up again, but I'm a little afraid I may not recognize the early signs. I think Buster and Meg's Mom have a good response there, so I think I'm starting to see a way of tracking it all now. Thanks!

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Thank you all for the feedback and the poll participation. And this is the nutshell I must've missed in previous threads somehow.

 

Plus, frankly, I'm distraught that, despite DS definitely exhibiting these broad swings in Y-Boc during exacerbation, none of our paid professionals were prepared to step forward and say anything along the lines of, "This is extreme. This is unusual. This is not in keeping with what we generally see in the typical OCD child." B)

 

Thanks now to you, I have a quantitative tool I can use at home (if the professionals don't see the point, even once I've made a fresh issue of it), and I'll continue to keep tabs on his improvement or exacerbations so that we can continue to move forward!

 

Here is the thread I was thinking about: http://www.latitudes.org/forums/index.php?...727&hl=yboc. Worried Dad gives a good explanation of y-boc levels - others make some good points as well.

 

I felt the same way about professionals - everyone kept acting like these wild swings were "waxing & waning" and I kept thinking maybe it was because they were not living with it - maybe they did not believe how very good she was outside of an exacerbation. Now, I think that it's because they see this fairly often - in like 25% of little kids with OCD - because they have PANDAS, but are undiagnosed. And unfortunately, the controversy has made many very gunshy about diagnosing & kept the best research out of their hands. So the professionals are thinking this is normal. It's that darned disconnect between neurology and psychology. No one ever said it to us either - we had to look outside of psychologists to get the diagnosis (although I still have nothing bad to say about our psychological help. Just wish they had recommended medical help earlier).

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We were in the same place--no professionals acknowledging that the exacerbations were unusual until we tracked and documented dramatic response to antibiotics, time and again (3xs).

 

MomwithOCDSon--You said it well: "So we continue with ERP and we do see gains attributable to that, now that the abx have given him back some leverage against many of the most insidious OCD behaviors." I agree, that as a side-effect of Pandas OCD issues may linger--and some children may certainly benefit from help--absolutely.

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This was a bit tough to answer.

 

In our dd9's case, I would say overnight. When she was 7.5 her symptoms came on literally overnight following a 102 degree fever. We went downhill fast and had to hospitalize her to get her stable.

 

However, in going back over all our notes, we discovered that when she was 5, she exhibited what could be seen as OCD traits coincident with being treated for an upper respiratory infection. We think this was her real first PANDAS episode.

 

At that time, she exhibited excessive hand washing and worry about getting sick. A friend's child had died of a rare cancer and she was worried she too could get sick. We actually thought this a normal childhood fear that could be addressed with reassurance. She also exhibited the symptom of needing to walk 15 feet behind an older neighbor (who was ill at the time). Again, she was worried about contamination. It took about a month but she recovered. Curiously, that was one of the few times she (and her sister) had gotten antibiotics to cure an upper respiratory infection.

 

Regards,

 

Buster

 

She also had daytime urinary frequency (acting like she had a UTI--this was a child who previously would only pee 2x daily) at age 4.75 years, with neg. urine culture/urinalysis...2 days later she had a high FEVER but a strep test was never done (no sore throat). A week later her sister had a fever/vomiting...so I assume they both had strep. She has also had episodes of sensory defensiveness (had to cut tags out of clothes for a while), anxiety, low grade stuff off and on throughout early childhood. But, yes, for the most part she was a pretty normal kid until age 7.5 years.

 

INterestingly, re the daytime urinary frequency, it basically resolved but what did linger for years (until we went on long term abs) was a nightime thing where she would have to pee 2-3 x just before bed...she would go when she brushed her teeth, then 1-2 x more before going to sleep. Once we started long term abs, that stopped.

Edited by EAMom
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I HATE the words "wax and wane". Those words made me angry enough to yell at a few health care professionals in a dark time. To me, those are LAZY words. Define the illness and you find the way to health.

 

JMO....its ALL related to illness be it strep, lyme, celiacs etc....

 

and the dam docs look at you and peg you into a box(if it has feathers its a duck)(well, did you ever think you've been calling it a duck for 50 years and since you haven't been able to cure it maybe its really an osctrich)....and say wax and wane are typical... TYPICAL DURING AN ILLNESS......good days, bad days rise and fall.....but the question is what is making this person sick....what happend to trigger this illnesss...and the docs have a hard time, listen to the crazay parents who said ...you know he was sick last week...doc says "no correlation" and unless you as parent can force a docs hand...you are now on journey that might take years, and as your child's system gets strong it gets milder and then the reverse. And the problem is they give you chlonidine and ssri's but they are not treating the illness.....

 

Sorry i'm just needed to vent today!!!

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