PANDAS future

[norcalmom]

I don't know how come they keep saying it is a subset of OCD...at the AO conference Swedo said that pandas patients had comorbid OCD only 40% of the time. Choreaform movements much more common...I think that would include tics - did your son have tics?

 

This from a post from someone at the AO conference several days ago: (although I don't know if these numbers are when kids are in exacerbation or not..we had like 7-10 different symptoms, including OCD, tics, emotional lib, sep anx..but when exacerbation died down only left with a couple.)

 

 

[-- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%). Sorry, I would've gotten all of them if I could've, but the presentation moved at a brisk pace, and so did her Powerpoint slide show!

[amy s]

Can someone please explain how is this NOT sydenham's chorea?

[Mary M]

Can someone please explain how is this NOT sydenham's chorea?

 

I agree, especially with my dd's 166 CamK..and if you extrapolated the numbers in Dr Cunningham's research to reflect the markedly smaller # in the SC subset wouldn't the tail for SC go much lower than the table shows? The neurologist over the week end who saw my dd in the ER had no problem treating her if she had SC but that PANDAS dx was just too iffy for his taste.

[P_Mom]

This is my understanding...

 

Sydenham's chorea results AFTER Rheumatic Fever......Rheumatic fever is not required for PANDAS to develop. Subsequently, SC, since it results from RF, MAY result in damage to heart valves......PANDAS does not result in heart damage.(nothing has been proven and the vast majority of PANDAS kids that have been checked have no heart involvement)

 

They are considered two distinct conditions from the PANDAS docs I have spoken too....DR. K, Dr. L, and Dr. T.

 

Perhaps you can pose this question to Dr. T on his YUKU board. He has an "Ask Dr. T" section.

 

Also, the movements that develop in SC are different than the tics of PANDAS.....SC involuntary movements are more constant, writhing type movements of the body, arms, legs, etc....that is why it has been referred to as a dance called "St. Vitus Dance."

Edited June 8, 2010 by P.Mom

[EAMom]

What I'm irked by is the criteria for the study and the diagnosis should be two different things!

 

i'm with you on your rant, norcalmom! my son doesn't technically have a pandas diagnosis b/c he's never had an ocd diagnosis. lucky for us, an astute behavioral therapist listened, observed and pulled up pandas. low and behold, high titers, active strep and 100% remission with abx. no one else we were seeking help from was on her wavelength.

 

so far, it hasn't been an issue - but if i need school intervention in the future, will my ped write that diagnosis? i think . . . but am not sure.

 

the criteria for study and diagnosis should be different!

 

You don't need to have OCD to be diagnosed with PANDAS. If you have tics that would be enough. Although, I'm quite sure there are kids with PANDAS that don't have either OCD or tics, but they have ADHD or emotional lability, anxiety, or other comorbid symptoms.

 

Also, a lot of behavior that is actually rooted in "OCD" goes undiagnosed. For example, defiance can be a form of OCD...and our dd's anorexia was vert OCDish.

Edited June 8, 2010 by EAMom

[JAG10]

What I'm irked by is the criteria for the study and the diagnosis should be two different things!

 

i'm with you on your rant, norcalmom! my son doesn't technically have a pandas diagnosis b/c he's never had an ocd diagnosis. lucky for us, an astute behavioral therapist listened, observed and pulled up pandas. low and behold, high titers, active strep and 100% remission with abx. no one else we were seeking help from was on her wavelength.

 

so far, it hasn't been an issue - but if i need school intervention in the future, will my ped write that diagnosis? i think . . . but am not sure.

 

the criteria for study and diagnosis should be different!

 

You don't need to have OCD to be diagnosed with PANDAS. If you have tics that would be enough. Although, I'm quite sure there are kids with PANDAS that don't have either OCD or tics, but they have ADHD or emotional lability, anxiety, or other comorbid symptoms.

 

Also, a lot of behavior that is actually rooted in "OCD" goes undiagnosed. For example, defiance can be a form of OCD...and our dd's anorexia was vert OCDish.

 

 

I totally agree! Not being able to shift your attention from one thing to another looks ADHD, but hyperfocus, getting stuck in your thoughts-daydreaming, is on the OC spectrum too.

[Worried_Dad]

I totally agree!!! Our son was originally diagnosed with ARF / SC. Initially, he had migratory joint pain, muscle weakness, difficulty walking that transitioned (after 6 weeks - classic SC time lag) into seizure-like episodes where his limbs jerked uncontrollably. No OCD at all in those early days, although we did see the emotional lability and personality changes.

 

At that time, many local docs disputed the SC diagnosis because our son's movements were episodic and not continuous. Over time, they became more tic-like as well. But it always frustrated the heck out of me that docs "threw the baby out with the bathwater": "Your son doesn't have SC because his movements are not classic choreiform and are not continuous, therefore all of his symptoms must be psychogenic / psychiatric." Huh?!? The symptoms emerged out of nowhere after a high fever; his ASO was elevated (as well as RF and ANA, signs of infection and autoimmune response); he definitely met the "modified Jones criteria" for ARF; he was still spiking intermittent fevers (prior to abx); he met every criterion for the diagnosis except his movements were episodic instead of continuous. Argghh!

 

Then after his long-term abx were stopped, he had his "exorcist explosion" of PANDAS symptoms: urinary frequency, anorexia, massive OCD, ODD, wildly dilated pupils, rages, crying jags, suicidal talk, a verbal tic added to the resurgent motor tics. And at that point every local doc just referred us to the psychiatrists.

 

What I believe - and what Dr. K and Dr. L both told us during phone consults about our son - is that this is all part of a spectrum of post-strep autoimmune disorders that includes ARF, SC, and PANDAS. In fact, Dr. L actually told us that she thought our son belonged "closer to the SC side of the spectrum" based on his case history.

 

Considering that ARF / SC is a well established, non-controversial disorder, it amazes and appalls me how quickly the PANDAS diagnosis - which overlaps SC so obviously - is thrown out as "preposterous." I'm no MD... but that seems utterly irrational to me.

 

 

Can someone please explain how is this NOT sydenham's chorea?

 

I agree, especially with my dd's 166 CamK..and if you extrapolated the numbers in Dr Cunningham's research to reflect the markedly smaller # in the SC subset wouldn't the tail for SC go much lower than the table shows? The neurologist over the week end who saw my dd in the ER had no problem treating her if she had SC but that PANDAS dx was just too iffy for his taste.

[P_Mom]

Worried Dad....how is your son doing? Still improving on HD Augmentin?

 

Hope so!

 

Kelly

[Worried_Dad]

Last Saturday was our PANDAS son's 14th birthday. In a way, it made me sad to think about all the time PANDAS has stolen from his childhood over the past 3+ years (although I realize other poor kids have suffered much longer). Recent birthdays have not been kind to him. On his 11th birthday, he had his 1st "seizure-like episode" and spent the evening in the local ER. On his 12th birthday, we had just discontinued abx per local doc's advice (based on the official NIMH guidelines for PANDAS) and he was spiraling downhill again. On his 13th birthday, he had just suffered his 3rd and worst exacerbation and could not touch anything due to contamination fears, could not eat, was spraying everything (including his own arms) with Lysol until it dripped all over. Total torment.

 

So last weekend was complete joy for him and our whole family! He ate like a horse, played outside with our puppy and the neighbors, went inline skating around the neighborhood, played computer and video games, went to a movie with me and his brother. These are such simple things... but they were all utterly beyond imagining one year ago.

 

He's not 100% yet. We know we have major challenges ahead: getting him back to school after a 3-year absence, getting the rest of our infected family's ASO titers down, reducing his abx dosage eventually. But life is so much better for him - and all of us - that it at times feels miraculous!

 

Needless to say, my wife and I were grinning from ear to ear. Our PANDAS son had a truly HAPPY birthday for the 1st time in 4 years!!!

 

Worried Dad....how is your son doing? Still improving on HD Augmentin?

 

Hope so!

 

Kelly

[norcalmom]

Dear Worried Dad,

 

Thank you so much for sharing that happy story! Since my son's first episode happened around his 10th birthday,(and that day I remember clearly how horrible it was ) I think I will always use the birthdays as pandas milestones. I know I did this past year. I'm soooo happy for you and your son.

 

Did you do IVIG or PEX? Do you think he is "growing out of it around puberty"?

 

Thanks again for sharing this hopeful message.

[P_Mom]

Worried Dad........

[peglem]

So last weekend was complete joy for him and our whole family! He ate like a horse, played outside with our puppy and the neighbors, went inline skating around the neighborhood, played computer and video games, went to a movie with me and his brother. These are such simple things... but they were all utterly beyond imagining one year ago.

 

How cool!

[Worried_Dad]

Hi, norcalmom:

 

We did 3 rounds of IVIG with Dr. K. They helped, but the improvement didn't last. For our son, the key has been the "Saving Sammy" dose of augmentin XR, which he's been on for about 9 months now. The last 9 months have been the most sustained period of progress since this nightmare began in Spring 2007.

 

I'd love to believe he'll grow out of it with puberty, but we're not counting on that. We recently found out that our entire family has elevated ASO titers, so that explains why he kept getting sick again after IVIG. We're not going to drop the abx dosage until we're sure the rest of the family is strep-free!!!

 

Dear Worried Dad,

 

Thank you so much for sharing that happy story! Since my son's first episode happened around his 10th birthday,(and that day I remember clearly how horrible it was ) I think I will always use the birthdays as pandas milestones. I know I did this past year. I'm soooo happy for you and your son.

 

Did you do IVIG or PEX? Do you think he is "growing out of it around puberty"?

 

Thanks again for sharing this hopeful message.