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Dr. T's latest


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64 replies to this topic

#1 oivay

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Posted 28 February 2012 - 06:44 PM

This is the latest from Dr. T........


UPDATE ON TOURETTE-LIKE ILLNESS CLUSTERS - the Leroy Syndrome

I had the opportunity to examine both girls from Corinth, NY area today. This makes 11 girls examined in all. I spent fours hours with the two families. Although these families travelled through the Leroy area over the past summer, I do not believe this has any bearing on this case. After taking their histories and examining them I am ...more convinced than ever that they have the same disorder as the Leroy girls and that this is definitely not a conversion disorder. It is a new clinical syndrome.

I think it's best to call this cluster the "Leroy Syndrome" as it does not meet clinical criteria for Tourette Syndrome, PANDAS or PANS. This is a matter of semantics, what doctors sometimes call "nosology"

The "Leroy Syndrome" has the following features:

1. Hyperacute onset - the cardinal feature
2. Exclusively, or largely female, post-pubertal onset
3. Ballistic tics, upper body, frequent unilateral predominance, frequent nuchal involvement with echopractic features
4. Occasional vocal tics, typically synchronous with ballistic movements
5. Occasional features: migraine headache, autonomic dysfunction (POTS and fainting)
6. Minimal or no obsessive-compulsive features or anxiety
7. Minimal or no cognitive decline
8. Minimal or no choreiform signs

The Leroy Syndrome is a PANDAS variant. All cases examined thus far have a GABHS or mycoplasma trigger. All cases are responsive to anti-inflammatory agents. All cases are treatable with appropriate antibiotics.

Dr. T


What do you you guys think?


#2 t_mom

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Posted 28 February 2012 - 07:07 PM

I like it much better than "conversion disorder" !

Dr. T. is wisely choosing his words carefully, and the bottom line appears to be the same as PANS -- illness triggered inflammation.

He notes, "The Leroy Syndrome is a PANDAS variant. All cases examined thus far have a GABHS or mycoplasma trigger. All cases are responsive to anti-inflammatory agents."

What needs to be said now should be by the girls and their parents, as they improve--I hope they will share their stories to benefit others.

Edited by T.Mom, 28 February 2012 - 07:07 PM.


#3 ozimum

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Posted 28 February 2012 - 07:38 PM

The interesting thing for me is Dr T's 6th feature of "Leroy Syndrome" - ie. "Minimal or no obsessive-compulsive features or anxiety." Sort of looks like these girls are falling between the cracks of the White paper!

#4 eamom

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Posted 28 February 2012 - 08:36 PM

Darn...it sure would be interesting to run Cunningham labs on these girls!

#5 nevergiveup

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Posted 28 February 2012 - 10:03 PM

These kids look different than the panda kids, look in their eyes, not the same as u see in a pandas child. Definately, no ocd, no terror, no panic like our kids with intrusive thoughts. I have been watching the videos and I do not see dilated eyes like our kids have. Does anyone else agree?

#6 peglem

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Posted 28 February 2012 - 10:21 PM

These kids look different than the panda kids, look in their eyes, not the same as u see in a pandas child. Definately, no ocd, no terror, no panic like our kids with intrusive thoughts. I have been watching the videos and I do not see dilated eyes like our kids have. Does anyone else agree?

Agree

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#7 tpotter

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Posted 29 February 2012 - 04:35 AM

Darn...it sure would be interesting to run Cunningham labs on these girls!



I know she was originally shooting for around April to open her lab. I don't know if that's still the case, but I sure hope so.

He did say on his press release that 2 out of 9 tested CDC positive for Lyme. Given the fact that he also said that 8/9 tested positive for mycoplasma pneumonia, and mycoP can be a co-infection of LD, well...sounds like it's all interrelated. I'm surprised he didn't mention the CDC + for LD on his FB page.

Also, given the fact that some PANS kids have little to no OCD, I still think this is PANS (which would make it a PANDAS variant.)

#8 momwithocdson

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Posted 29 February 2012 - 04:35 AM


These kids look different than the panda kids, look in their eyes, not the same as u see in a pandas child. Definately, no ocd, no terror, no panic like our kids with intrusive thoughts. I have been watching the videos and I do not see dilated eyes like our kids have. Does anyone else agree?

Agree


Yes, very astute, Nevergiveup. I agree. Just don't like the "it's all in your head"-ness via Conversion Disorder. Much prefer Dr. T.'s "variant."

Maybe it's an age thing, the variant? These girls are older, generally.

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#9 nevergiveup

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Posted 29 February 2012 - 05:31 AM

I think it is extremely unfair to these girls and their families to have ever mentioned conversion disorder. I hope Dr T can help them.

#10 concerned lady

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Posted 29 February 2012 - 09:45 AM

Everything you all wrote, plus Dr. T's statements, are so helpful, and worth looking at very closely, and digging into more deeply, and will help me to learn more. Thanks for that.

In addition to looking for, finding, and treating the several infectious organisms (strep, mycoplasmas, lyme disease, other organisms like viruses, etc., etc.):

I think it may also be helpful for Dr. T. to find out which girls and boy had been vaccinated with WHAT VACCINES, AND WHEN. (Gardasil, flu shot, other vaccinations)

If more boys get the Gardasil shot, I wonder if more boys will be getting tic disorders, etc.

Also, SOFTBALL FIELDS (seems to be one factor that many apprear to have in common) are sometimes built on or near OLD TOXIC DUMPS, so I'm glad Erin Brockovich's team is still looking into the Le Roy area's toxic FRACKING CHEMICALS (many are neuro-toxic) used in natural gas wells, plus the old 1970's train derailment SPILL of toxic NERVE POISONS, fairly close to the school. I hope Erin's team can get samples from soil, water, and air, right at the school, and near the Le Roy school.

I hope Erin's team goes to Corinth, too, in case of similar (parallel) environmental concerns there, similar to Le Roy.

Lou Gehrig, I think, from what I've read, played baseball for years, on a field that was on top of an old toxic dump, and he got ALS/Amyotropic Lateral Sclerosis, named Lou Gehrig's Disease after him. Illegal dumping of toxics into streams is also possible (saves companies money).

The previous HURRICANE caused FLOODING, that may have brought toxic stuff up to the surface, more quickly, more recently.

Carol

#11 Fixit

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Posted 29 February 2012 - 11:00 AM

These kids look different than the panda kids, look in their eyes, not the same as u see in a pandas child. Definately, no ocd, no terror, no panic like our kids with intrusive thoughts. I have been watching the videos and I do not see dilated eyes like our kids have. Does anyone else agree?


NGU, i am sure you are voicing what others might be thinking...but

I do not agree!
I will not let ticcers only, slip into the abyss.

And if there is ANY ocd or skin sensitiviey or dialated eyes, that all might come and go. Or be sooo minimal, it is, or can be written off as quirk, or normal child behaviors. Oh, and espcially being a teen, an outburst would be pure teen behavior. Again, if any of these are occurring.
If they are healing on their own, there systems may be healthier than our children's that were triggered at younger ages and they have cleard the infection on their own. That is one of the speculations with SOT. That some may clear this on their own. They just got a strong trigger this time and are a little run down from the long school year.

It is still all speculation, and no one knows all the dirty details of this condition and i hope that all docs remember that and keep an open mind going forwad.


I just need to stand up. Glad i peeked to see the current topics.
Even current panda docs are going to need to cover their behinds with that new white paper out.
I wrote a long letter about this that i was going to post but have refrained.
It is going to be alot more difficult going forward, unless you really fit the niche, for my kids more than most.

I always think i've said enough, but one more thing..... dh side,( where this comes from), dh brother had mild ocd for a short period in childhood and one aunt of his still has mild mild mild ocd.
just that dh and his kids present with tics.
The panda mom friend of mine, who was going to be orginal panda study..daughter ocd only(she has mild anxiety now in teens), son tic only.

OK done.

#12 nevergiveup

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Posted 29 February 2012 - 11:13 AM

A lot of these girls have seizures, and stuttering, not a common symptom of pandas and for all the girls not to OCD, kind of strange, u would think some would. Not sure what ur point is Fix it! Why are u so defensive and accusational. No one ever said that tics only cannot be pandas. These girls are suffering and I in have no agenda to force a pandas diagnosis on them. They may have something more complex and serious, they could have been exposed to neurotoxins. Jusy wanted to say I agree with Dr T saying that this is not "typical" pandas.

#13 eamom

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Posted 29 February 2012 - 11:28 AM

A lot of these girls have seizures,


these girls actually had pseudo (non-epipleptic) seizures.

Pseudo seizures can be seen with PANDAS and SC
http://jnnp.bmj.com/...t/75/6/914.full

I also suspect that at least 1 of the Le Roy girls had pre-existing PANDAS. She had a previous diagnose of TS and a history in infections and OCD.

But, I agree this is not the "typical" presentation of PANDAS...I do wonder how common it is. If we gathered up all the teen girls (boys) in this country (ones that have been diagnosed with TS or conversion disorder) and were worked up correctly (testing for infectious triggers), I wonder how many of them would have this Teen Tic Le Roy PANDAS-like variant and would also respond to abs and anti-inflammatories? Maybe this is more common than we think, but not diagnosed as PANDAS-like b/c they are "too old" and docs do MRI's on these kids, not titers and cultures.

#14 tpotter

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Posted 29 February 2012 - 11:34 AM

A lot of these girls have seizures, and stuttering, not a common symptom of pandas and for all the girls not to OCD, kind of strange, u would think some would. Not sure what ur point is Fix it! Why are u so defensive and accusational. No one ever said that tics only cannot be pandas. These girls are suffering and I in have no agenda to force a pandas diagnosis on them. They may have something more complex and serious, they could have been exposed to neurotoxins. Jusy wanted to say I agree with Dr T saying that this is not "typical" pandas.



Actually not true. DS16 has had "seizure-like activity" (including abnormal brain waves on 7 different eeg's), and is on 2 different seizure meds that do help control the symptoms. He has also gotten stuttering, and other speech problems during flair-ups. Although he has seizures, they are not epileptic (abnormal brain activity on the fronto-temporal lobes does not correlate with behaviors), but is still described as non-epileptic seizures. Notice that Dr. T. did not say they were epileptic. Dr. L. (also a neurologist) believes that DS's seizures are related to his PANS.


I'm not sure what "typical" PANDAS would actually be? All our kids have some similar symptoms, and non-similar. There are so many different symptoms. Everything these girls have are similar to things my boys have had. And, as Fixit said, some of the symptoms (such as the OCD) may be going away, or they may not have recognized them as OCD (I told a PANDAS specialist that DS did not have OCD, but I later found out from a educational psychologist that they had mild OCD, and it had gotten better at times.

#15 powpow

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Posted 29 February 2012 - 12:03 PM

for what it is worth (probably nothing) my girls' all have had stuttering during their exacerbations. (never stuttered a word before!)




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