Is PANDAS a subset of Tourettes or of OCD?

[LNN]

acdroberts-

you're not alone. My son is tic-dominant Pandas as well. During his worst episode last fall, he had OCD symptoms that interfered with life. But usually it's mild. More like certain things have to be done to "feel right". Gets very aggitated if he can't follow thru on a script of how things "should be". But no worries that something bad will happen if a ritual isn't performed. It will just nag at him and he "has to" follow through - I suppose more compulsion than OCD with associated dire consequences.

 

But my son pays the price of "dodging the ocd" by having tics so bad that he looks like he's being electrocuted (or full body myoclonic jerks). On two very bad episodes, he's "frozen" like a statute for about 3 seconds at a time. Can't move or speak - will freeze mid-stride or mid-sentence, then after a few seconds would pick up where he left off. (Woke my husband up at 2am last fall convinced son had von Economo's encephalitic lethargy).

 

FYI - Dr Cunningham's notes on our results were that ds had elevated anti-lysoganliosides and anti-tubulin but normal D1 & D2. CAM Kinase 183% (too bad our sample was taken 10 days before he started "freezing" again - I wish I could know what those levels were). So the D1/D2 seem associated with higher OCD and the lyso/tubulin seem to go with the tics and/or other lovely symptoms.

 

I sometimes wonder tho if doctors who see tic-dominant Pandas aren't quicker to diagnose our kids with TS and dismiss Pandas. That's what our 1st neurologist did. It was our family therapist who urged us to not accept a TS dx and continue searching for Pandas treatments. When we got Dr Cunningham's reports back and ds responded dramatically with prednisone, it was all I could do to not write to the 1st neurologist and say "remember the respiridol, tenex and haldol you wanted us to consider? Remember your scoffing at antibiotics? Well, in your face!" We're now with Dr Latimer and are starting to see improvements 2 1/2 weeks after PEX at Georgetown.

 

LLM

[dee45]

hi,

Anthony presented with tics and ocd --first diagnosis tourettes--University Hospital, 2nd diagnosis tourettes--Hopkins, 3rd diagnosis PANDAS talk about being confused!

 

Deanna

[EAMom]

It looks like seeing Harvey Singer (at Hopkins) is a sure way to get a tourettes (vs. PANDAS) diagnosis! ( For those that don't know about Singer, this thread: http://www.latitudes.org/forums/index.php?showtopic=5196 )

[EAMom]

Sadly, Mae Sokol passed away in 2007. I believe it was cancer.

[dcmom]

Our dd, age 6 (5 at onset) presented overnight with ocd like symptoms. She also has/had mild chorea.

[T_Mom]

Sadly, Mae Sokol passed away in 2007. I believe it was cancer.

 

 

That really saddens me--

 

Dr. Sokol's articles re: anorexia cases associated with PANDAS gave us the first insight into our d's sudden-onset anorexia (age 9) (which left as suddenly as it came.) That research was a great help to us.

[nevergiveup]

 

 

Hi Buster,

 

Are you going to try to reconcile this info to send to Harvey Singer? My childs medical history is as follows first severe onset OCD and psychosis at age 7, hospitalized for not eating. Had residual OCD intrusive thoughts about 4 months and then symptom free for 2 years. Sudden chorea, balance and coordination issues and left sided paralysis, Diagnosed with asymmetrical SC, 6 weeks later recovered with residual OCD (intrusive thoughts) and tics for about 6 months. 1 1/2 years later sudden attack with chorea, coordination issues, severe tics this time, minimal OCD this time. Still recovering. Pediatrician always said that TS is different than OCD with tics, never really quite understood what the differentiation was until recently. For us the attacks are clear and overwhelming, with serious cognitive and memory problems, spider feelings on her skin, frequent urination, hot cold sensations throughout her body, coordination issues, intrusive thoughts and tics. They are severe for about 8 weeks with residual issues lasting up to a year. (Especially after a cold or virus) The medical history of his kids should include other symptoms other than tics and OCD like choreaform movements, frequent urination, sudden and severe onset with almost complete remission. (Lasting longer than 4 months as to eliminate the TS diagnosis) How did Kurlan screen his PANDAS kids??

In medical research, usually the test group is selected from the sickest and the clearest matching of symptoms so as not to ruin the results. I know because I have MS however have never qualified for a research study because without some disability and worsening of symptoms I do not qualify. MS like PANDAS cannot at this time be diagnosed from a blood test and is an assumed diagnosis based on symptoms correlating with MRI results. However, many times misdiagnosed. Swedo had a list of qualifications neede to be put in their study. What was KURLANS symptom qualifications for the kids to be in SINGERs study. I did email Singer a week ago telling him my childs history and asking him to reconsider his selection critieria and look again at PANDAS and the antibodies. Interesting he recently published a study with preliminary findings implicating antibodies and autism, antibodies created by the mother while pregnant causing autism in the baby before birth. He recreated the symptoms in an animal model.

[EAMom]

Us too.

[momof4specialneeds]

Have you heard the phrase "absent seizure"? It's not a gran mal seizure that you see on TV. It's like they are doing something, blank out for a few seconds, then return back to what they are doing like nothing had happened. My son has them and it's very hard to distinguish that from inatatention. But if you look on you tube you can see some examples that have been posted. Of course an EEG didn't show anything. The other thing I notice is that my son gets very bad behaviours right before and it's like the absent seizure resets him. This may not be what your son has, but it might be worth looking at.

 

acdroberts-

you're not alone. My son is tic-dominant Pandas as well. During his worst episode last fall, he had OCD symptoms that interfered with life. But usually it's mild. More like certain things have to be done to "feel right". Gets very aggitated if he can't follow thru on a script of how things "should be". But no worries that something bad will happen if a ritual isn't performed. It will just nag at him and he "has to" follow through - I suppose more compulsion than OCD with associated dire consequences.

 

But my son pays the price of "dodging the ocd" by having tics so bad that he looks like he's being electrocuted (or full body myoclonic jerks). On two very bad episodes, he's "frozen" like a statute for about 3 seconds at a time. Can't move or speak - will freeze mid-stride or mid-sentence, then after a few seconds would pick up where he left off. (Woke my husband up at 2am last fall convinced son had von Economo's encephalitic lethargy).

 

FYI - Dr Cunningham's notes on our results were that ds had elevated anti-lysoganliosides and anti-tubulin but normal D1 & D2. CAM Kinase 183% (too bad our sample was taken 10 days before he started "freezing" again - I wish I could know what those levels were). So the D1/D2 seem associated with higher OCD and the lyso/tubulin seem to go with the tics and/or other lovely symptoms.

 

I sometimes wonder tho if doctors who see tic-dominant Pandas aren't quicker to diagnose our kids with TS and dismiss Pandas. That's what our 1st neurologist did. It was our family therapist who urged us to not accept a TS dx and continue searching for Pandas treatments. When we got Dr Cunningham's reports back and ds responded dramatically with prednisone, it was all I could do to not write to the 1st neurologist and say "remember the respiridol, tenex and haldol you wanted us to consider? Remember your scoffing at antibiotics? Well, in your face!" We're now with Dr Latimer and are starting to see improvements 2 1/2 weeks after PEX at Georgetown.

 

LLM

[LMama]

My son was 5 when he had 1st major episode. He presented with major tics. within a few weeks i noticed some mild ocd behavior, but tics were severe. Second episode was very recently (over a yr later) and he presented more with mild ocd, but we caught it so quickly and treated with antibiotics that we only saw the behaviors for 2 days. now he is back to "normal" for now. not on abx now, but wish i could find a dr. in florida that treats PANDAS kids. Anyone know of anyone?

[momof4specialneeds]

Dr Bradstreet in Florida, Creations Own

 

http://www.icdrc.org/

[pixiesmommy]

According to Dr K (when we asked why IVIG instead of PEX,) IVIG has better results for presentations with psychiatric/behavioral components and PEX has better results for presentations where tics are the main component.

 

Pixie's tics were one of the first physical symptoms we noticed, after fevers, however, I did not recognize certain aspects of her behavior as OCD behavior, so I think she actually had OCD first. The OCD did not present "typically" (like HAVING to open a window and close the door, etc) until after tics began. So... hard to say.

 

She was diagnosed with things in this order by the "professionals"

 

Bipolar

SPD

possible ADD

Tourette's

OCD

PANDAS

[sf_mom]

I feel for you and the potential misdiagnoses!!!!!

 

I also understood from Dr. K that it depends on how old the child is when treated with IVIG (our son is 5) and how long they've been potentially suffering from PANDAs. Our son presented with MOOD LIABILITY initially (it was a week after his illness that the movements kicked in) and had greater TICs/Chorea movements than OCD. He's been on antibiotics for over a month and the OCD behavior was the first to disappear, he still has VERY MILD tics and some mood liability when tired. So, his improvements have gone in reverse order similar to others 'I think'.

 

We leave for Chicago this morning for IVIG.

 

-Wendy

 

According to Dr K (when we asked why IVIG instead of PEX,) IVIG has better results for presentations with psychiatric/behavioral components and PEX has better results for presentations where tics are the main component.

 

Pixie's tics were one of the first physical symptoms we noticed, after fevers, however, I did not recognize certain aspects of her behavior as OCD behavior, so I think she actually had OCD first. The OCD did not present "typically" (like HAVING to open a window and close the door, etc) until after tics began. So... hard to say.

 

She was diagnosed with things in this order by the "professionals"

 

Bipolar

SPD

possible ADD

Tourette's

OCD

PANDAS

[EAMom]

Nevergiveup...Re. Singer, he continues to maintain that the children in his study meet Swedo's PANDAS criteria.

 

A friend of mine posted this on facebook the other day. I thought it was appropriate to the Singer/Pandas situation: Proverbs 14:8 ... "Don't try to talk sense to a fool; he can't appreciate it"

[EAMom]

According to Dr K (when we asked why IVIG instead of PEX,) IVIG has better results for presentations with psychiatric/behavioral components and PEX has better results for presentations where tics are the main component.

Interesting!

 

Pixie's tics were one of the first physical symptoms we noticed, after fevers, however, I did not recognize certain aspects of her behavior as OCD behavior, so I think she actually had OCD first. The OCD did not present "typically" (like HAVING to open a window and close the door, etc) until after tics began. So... hard to say.

 

She was diagnosed with things in this order by the "professionals"

 

Bipolar

SPD

possible ADD

Tourette's

OCD

PANDAS

 

It saddens me to think how many kids suffer for years and are given potent psych. (which may just make things worse) drugs when they actually have PANDAS. Part of me wonders what percent of bi-polar diagnoses in children are actually PANDAS. So many parents don't have the support or resources to question their docs and thus go with the first diagnosis they get.

 

(What's spd?)