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TS vs. PANDAS ?


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ok so I am constantly being told by my original pediatrician that TS is also seen with Strep throat and children can have personality changes?!! :wacko:

 

I am trying to understand if this is true, how do I go about distinguishing them apart? only Dr. T and the pediatrician Dr. Sears seem to think it's PANDAS in my son not tourettes.

 

But, my old Pediatrcian and his partner in practice simply think he has T.S.! It's as if they want to treat the symptoms with drugs and not look further into it.

 

 

Please help, I have a kid who has lost his original personality and even tempered nature and is now defiant, cries alot and seems to have issues with short term memory, to name a few. :(

Edited by socalmom
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Please help, I have a kid who has lost his original personality and even tempered nature and is now defiant, cries alot and seems to have issues with short term memory, to name a few. :(

 

Socalmom --

 

Your sentence there, IMHO, pretty much says it all. Do kids with "regular TS" lose their original personalities, develop defiance, emotional lability, memory loss, separation anxiety, etc.?

 

My DS doesn't have tics but he has a full array of the OCD behaviors, and I, too, 1) had been told for years preceding PANDAS that he had "regular OCD," and 2) that there's some sort of verifiable difference between "regular OCD" and "PANDAS OCD." But after 6 years of treating "regular OCD" with SSRIs and therapy, my son fell off a cliff emotionally and mentally, similar to how you're describing the recent changes in your boy. And through a series of new resources, I was finally able to get someone to listen to me and give us a chance with treating PANDAS. After 2 years of abx, I have my kid back, personality fully intact. So much for "regular OCD."

 

The more time passes, the less convinced I am that there is "regular" anything, be it OCD or TS or whatever. If you're familiar at all with Dr. Amy Yasko and have read anything of hers or heard her speak on autism, she frequently opens with her "Princess Diana" analogy: that if it hadn't been nightime, if the car hadn't been in a tunnel, if the car hadn't been speeding, if the paparazzi hadn't been chasing them, if the Princess had been wearing her seatbelt, etc., then perhaps the tragedy of that day would not have occurred. Likely, it took a combination of all of those conditions to result in the outcome.

 

I think PANDAS is like that. Not all kids who get strep or Myco P, etc. wind up with PANDAS. And not all kids with PANDAS get tics, not all kids with PANDAS get OCD, not all kids with PANDAS suffer from brain fog, or ADD, etc. But if your kid has the "set up" -- genetically, environmentally, immunologically, etc. -- for the PANDAS to take up residence, it will. So maybe my DS was "predisposed" to OCD without strep in the picture, and the strep set it off. Maybe your DS was predisposed to TS, and an infection set that off for him.

 

If there is a diagnostic difference between PANDAS OCD/PANDAS TS and "regular" versions of those behaviors, then I would think it would be one or both of the following: 1) PANDAS responds to medical interventions like abx, IVIG, PEX, etc.; and 2) though some comorbities are noted with "regular" OCD and TS, also, the vast array and sudden appearance of the comorbidities in a PANDAS case seems to me to be something far and above what most practitioners will note in that class of patients they consider to be "non-PANDAS."

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Just to add to MomWithOCDSon,

 

Non-pandas tics (eg tourettes) should have a lower CaM kinase ll level vs. PANDAS kids with tics.

 

I also wonder if when a non-believeing doc says kids with tourettes can have personality changes just like PANDAS kids, how many of those "tourettes" kids actually have undiagnosed PANDAS...kind of muddies the waters, doesn't it?

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I LOVE MOMWITHOCDSON'S POST!!!!!!

 

My comment does not only apply to TS, but also ADHD, OCD and crew....... if you do happen to decide to dutifully obey these docs that you have put your trust in like I did 6 years ago and you try psych meds, be cautious of the following scenario: You try the prescribed psych med and it helps...a little, but.... some other psych symptom pops up. I call this symptomatic whack-a-mole. For example, Dr. Jori Goodman talks about ADHD kids who are put on a stimulant and then begin to tic. He says these kids are most often PANDAS. My dd was put on SSRI for ADD which initially cleared the brain fog, but made her incredibly moody. Then they wanted to add a mood stabilizer (for a kid who had previously never been moody), then that made her dull and they added a stimulant, ect., ect. Who am I to say psych med cocktails are never called for? nobody. But for "new to pandas" parents out there, I think that's a big clue. I mean, if a simple psych med worked, I'd have been done with this mess a long time ago! We tried them ALL in different doses and combination and everything just kept deteriorating for my girl until pandas treatments.

 

That doesn't mean medical interventions are an easy road; don't kid yourself. Even when/if you line up your medical dream team, it's still not easy or cheap. But with some time and digging, it is fruitful.

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You guys rock!

 

Seriously, all that I am dealing with right now is so overwhelming yet you people here are so reassuring and so helpful. THANK YOU.

 

 

My mom " sense" tells me I am on the right path, so to be sure after Dr. T diagnosed him with PANDAS, I went to Dr. Sears in person to have someone

 

who is a believer see my son in person, he too didn't doubt me.

 

 

EAMom, I really think it does muddy the waters. I am not informed on what this CaM kinase ll levels are though. I'm still quite ignorant on this subject matter.

 

Where would I find a chart for levels/numbers of CaM kinase ll of TS vs. PANDAS?

 

MomWithOCDson Yeah, you seem to be able to put into words really well what I suspect. My son is off abx and seems " wild" now.

 

I don't want to lose valuable time giving psyche meds to a kid who needs a different type of help.

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I LOVE MOMWITHOCDSON'S POST!!!!!!

 

My comment does not only apply to TS, but also ADHD, OCD and crew....... if you do happen to decide to dutifully obey these docs that you have put your trust in like I did 6 years ago and you try psych meds, be cautious of the following scenario: You try the prescribed psych med and it helps...a little, but.... some other psych symptom pops up. I call this symptomatic whack-a-mole. For example, Dr. Jori Goodman talks about ADHD kids who are put on a stimulant and then begin to tic. He says these kids are most often PANDAS. My dd was put on SSRI for ADD which initially cleared the brain fog, but made her incredibly moody. Then they wanted to add a mood stabilizer (for a kid who had previously never been moody), then that made her dull and they added a stimulant, ect., ect. Who am I to say psych med cocktails are never called for? nobody. But for "new to pandas" parents out there, I think that's a big clue. I mean, if a simple psych med worked, I'd have been done with this mess a long time ago! We tried them ALL in different doses and combination and everything just kept deteriorating for my girl until pandas treatments.

 

That doesn't mean medical interventions are an easy road; don't kid yourself. Even when/if you line up your medical dream team, it's still not easy or cheap. But with some time and digging, it is fruitful.

 

Thanks JAG10, it's been far from easy or cheap. I couldn't do it with out this board right now, by some miracle i found it and you people are such a huge source of info and support!

Edited by socalmom
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EAMom, I really think it does muddy the waters. I am not informed on what this CaM kinase ll levels are though. I'm still quite ignorant on this subject matter.

 

Where would I find a chart for levels/numbers of CaM kinase ll of TS vs. PANDAS?

 

 

Look at figure 3b on page 3 http://pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

The PANDAS range (litle blue squares) is 100-200. The non-pandas tics range (upside down green triangles) is 50-110 (although who's to say for sure that the non-pandas tics kid with the 110 value wasn't really undiagnosed PANDAS?). Anyway, there is a grey zone (100-110), but it seems like many of the kids that were tested on this forum are well above that (150 plus).

 

The values on the chart were taken from kids in Swedo's orginal IVIG/PEX study.

 

I am proud to say that my dd's claim to fame was that her CaM kinase 11 was the highest Dr. Cunningham had ever seen, at least at the time (this was after an exacerbation b/c of H1N1, after she had been on full-strength antibiotics for 1.5 years). She was in the high SC range (250 something--see the red squares on fig. 3a). It went down after pred/ IVIG.

 

It's best to test when your child is in an exacerbation (although the first time we tested dd she wasn't, and she was still in the high PANDAS range). Also, pred/steroids will lower CaM kinase ll levels.

 

Cunningham's test isn't available right now, but hopefuly will eventually be available commercially. Lots of the PANDAS kids on this forum were tested in the past couple of years b/c she was collecting data for a study.

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Love all your posts, they are great.! I needed some encouragement.

 

I too just today was told that it was more likely TS or the new 'PANS' and not PANDAS. (yeah, the pediatric neurologist read the article that was just published). What about the OCD and anxiety and intermittent ADHD type symptoms? But does it really matter what you call it? If the reaction is from an infection and is considered auto-immune shouldn't the cause of the reaction be addressed? We too have no history of anyone in the family that had any of this type disorder.

 

We have been told to do IVIG by Dr K and Lyme doc; trying to find dr in our insurance network to order it. Dr today said that there has been no evidence that IVIG is effective for kids like ds and that Swedo does not recommend IVIG unless it is done in a study. Tried that - didn't meet criteria for study (>6 months before receiving diagnosis). Dr said that he was going to write Swedo a letter asking for advice on treatment. Will Dr get a response for Swedo?

 

We too went down the let's treat this, now this; now let's try this or this (symptomatic whack-a-mole). Everything seemed to make things worse.

 

Sorry to vent, but another doctors trip over 2 hours away may have been a waste of our time.

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Yes, Jag 10, I love this phrase "Symptomatic whack a mole" I'm going to be using it at the next visit to the psychiatrist!! My ds is in the same boat - ahead of the curve neurologist says PANDAS (high titers, flares with exposure) and psychiatrist says Tourette Spectrum Disorder (which encompasses ADD and OCD apparently, never heard of it)and what about the crazy sensory issues??? No drug for that! So as I'm waiting insurance approval for IVIG I went to unbelieveing pschy for a mood stabilizer to calm down rages in the interim only, so it helps "a little" but not enough, ADD drug causes more tics, add clonidine to counteract tics (does nothing) he's already on SSRI (pre PANDAS for anxiety), so here we are with a 9yr old loaded up with pschy drugs, still pretty dysfunctional and they scoff at the notion of giving an antibiotic, PUUUULEASE! Symptomatic Whac a mole exactly describes it, love it!

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Yes, Jag 10, I love this phrase "Symptomatic whack a mole" I'm going to be using it at the next visit to the psychiatrist!! My ds is in the same boat - ahead of the curve neurologist says PANDAS (high titers, flares with exposure) and psychiatrist says Tourette Spectrum Disorder (which encompasses ADD and OCD apparently, never heard of it)and what about the crazy sensory issues??? No drug for that! So as I'm waiting insurance approval for IVIG I went to unbelieveing pschy for a mood stabilizer to calm down rages in the interim only, so it helps "a little" but not enough, ADD drug causes more tics, add clonidine to counteract tics (does nothing) he's already on SSRI (pre PANDAS for anxiety), so here we are with a 9yr old loaded up with pschy drugs, still pretty dysfunctional and they scoff at the notion of giving an antibiotic, PUUUULEASE! Symptomatic Whac a mole exactly describes it, love it!

 

So your Neurologist believes it's PANDAS but won't rx antibiotics b/c he thinks it should be treated solely symptomatically (with psych. drugs)? Or is he willing to do IVIG but no abs? Sigh.

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they scoff at the notion of giving an antibiotic

 

BoyIowa and Kierra,

Give them the article from Dr. Michael Jenike (Harvard) linked in this thread. Treatment with antibiotics is discussed about 1/2 way through the article.

http://www.latitudes.org/forums/index.php?showtopic=15978

Edited by EAMom
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EAMom, sorry, let me clarify! He has been on and antibiotic for 1 1/2yrs now, believing neurologist is moving on to IVIG, she's great, wanting to learn, just not a PANDAS expert like Dr's K,L,M etc, so she's trying her best. She did send me to pschy, only for some interim measures (ds ran screaming from her office, slamming doors etc, rages I deal with everyday) and I finally agreed as we're still persuing the PANDAS route and just wanted something short term. I was just being sarcastic in general, of how non-believing pschy scoffed at the notion of PANDAS no matter what way it's treated! Regardless, this is why I'm contemplating flying cross country to see an "expert" to dig deeper to find source, immune deficiencies etc as it's out of scope of neurologist though she's trying.

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We too have been on abx for several months and neuro didn't scoff at abx. Went to try and get neuro to order IVIG. He scoffed at IVIG. He and I discussed the article that you had referenced. I did remind him that IVIG was the first course of treatment discussed in the paper. He then said that he had read somewhere that IVIG should only be used in a study and offered to write Swedo. I was impressed that he was keeping himself informed and willing to write a letter.

I have a couple of doctors willing to do IVIG, but for cash. We don't have that kind of $ sitting around. And the recommendations were both for multiple HD IVIGs.

We did just have T&A out and switched to Augmentin XR and are adding Methyl b12 and looking for a local CBT. So, I guess we have a few other things to try while we try and get IVIG covered by insurance.

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EAMom, I really think it does muddy the waters. I am not informed on what this CaM kinase ll levels are though. I'm still quite ignorant on this subject matter.

 

Where would I find a chart for levels/numbers of CaM kinase ll of TS vs. PANDAS?

 

 

Look at figure 3b on page 3 http://pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

The PANDAS range (litle blue squares) is 100-200. The non-pandas tics range (upside down green triangles) is 50-110 (although who's to say for sure that the non-pandas tics kid with the 110 value wasn't really undiagnosed PANDAS?). Anyway, there is a grey zone (100-110), but it seems like many of the kids that were tested on this forum are well above that (150 plus).

 

The values on the chart were taken from kids in Swedo's orginal IVIG/PEX study.

 

I am proud to say that my dd's claim to fame was that her CaM kinase 11 was the highest Dr. Cunningham had ever seen, at least at the time (this was after an exacerbation b/c of H1N1, after she had been on full-strength antibiotics for 1.5 years). She was in the high SC range (250 something--see the red squares on fig. 3a). It went down after pred/ IVIG.

 

It's best to test when your child is in an exacerbation (although the first time we tested dd she wasn't, and she was still in the high PANDAS range). Also, pred/steroids will lower CaM kinase ll levels.

 

Cunningham's test isn't available right now, but hopefuly will eventually be available commercially. Lots of the PANDAS kids on this forum were tested in the past couple of years b/c she was collecting data for a study.

 

 

So I can ask my Dr. for this test? My head is spinning I haven't slept in days so I am sorry if i seem daft.

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