TS not PANDAS

[kleek3]

Hello,

 

My name is Kristin and I posted last month as we awaited a dx for our DS4. We traveled to Yale yesterday to see Dr. L and his dx was classic Tourette's. From what I understood, DS4 lacked the OCD portion of the PANS dx. We are so happy to have an answer finally. We have stopped the antibiotics as of yesterday and shall wait to see what happens. In the meantime, Dr. L has given us a list of activities to involve him in to help with the Tics/ADHD portion of his dx. Thank you for the support. We shall educate ourselves and let the chips fall as they may for now.

 

KK

[beeskneesmommy]

Just curious about who Dr. L is at Yale?

[smartyjones]

i looked back at your other post and believe you mention there was a connection with strep -- ? -- if you're speaking about the Dr. L at Yale i think you are, i find him a solid positive player in the PANDAS world, so not at all arguing. .. just curious if you are willing to share why this is TS not pandas with a strep connection.

 

 

jsut to mention again, we have been greatly helped with behavior issues by the philosophies of Dr. Ross Greene in The Explosive Child, Lost at School and his website livesinthebalance.org. his organization is quite responsive by email and he has a radio call-in program.

 

 

 

EDIT -- okay, i see now you say he lacks the OCD portion -- i just feel confused b/c i see you mention behavioral issues -- were these new with onset of tics? i do confess, i am not really that familiar with TS and my son has not experienced tics. he did have severe behavioral issues that only a savvy behavioral therapist saw as OCD and headed us toward pandas. i certainly would consider Dr. L more than savvy -- i just feel confused. I'm not at all trying to say that i disagree, i'm just tyring to educate myself on why you have a classic TS diagnosis with a strep connection.

Edited September 12, 2012 by smartyjones

[blakes_mom]

Hello,

 

My name is Kristin and I posted last month as we awaited a dx for our DS4. We traveled to Yale yesterday to see Dr. L and his dx was classic Tourette's. From what I understood, DS4 lacked the OCD portion of the PANS dx. We are so happy to have an answer finally. We have stopped the antibiotics as of yesterday and shall wait to see what happens. In the meantime, Dr. L has given us a list of activities to involve him in to help with the Tics/ADHD portion of his dx. Thank you for the support. We shall educate ourselves and let the chips fall as they may for now.

 

KK

Kleek 3. It is not necessary to have the OCD portion to be diagnosed with pans/pandas.I am also not sure of who you saw at Yale but I would be hesitant to accept a classic tourettes dx.

[Dedee]

Hmm, me too. When ever I hear about tics, and ADHD together I think of PANDAS / PANS. Then throw in a strep component and a big red flag goes up. OCD is a very tricky thing in kids and often goes misdiagnosed. I'm not so sure you actually have to have that piece anyway if you have the others. I'm sorry, I think I would insist on a lab work up. Did you get any relief from antibiotics? What kind did you use?

 

Dedee

[Mayzoo]

Here is something I just learned about Tourettes. Apparently Tourettes can have a strep component as well as an OCD component as well.

 

"Tourette's syndrome is commonly associated with attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, behavior problems and learning disabilities. These comorbid conditions make the management of Tourette's syndrome more challenging."

 

And:

 

"A throat culture should be checked for group A beta-hemolytic streptococcus, and an antistreptolysin-O (ASO) titer and levels of anti-DNAse B should be obtained in patients with a very rapid onset of symptoms or symptoms that appear to wax and wane with bouts of pharyngitis or otitis media. The correlation of microbiologic and serologic evidence of streptococcal infection with a single occurrence of tic exacerbation is insufficient to make a diagnosis of streptococcus-induced, autoimmune-caused Tourette's syndrome. "

 

My link

 

 

Live and learn, I am very glad I live in the era of the internet!

[airial95]

Since she was seen at Yale - wouldn't it be more likely to be Dr. Leckman than Dr. Latimer - who most people more commonly assume when they see Dr. L?

 

That was my initial reaction seeing where she was treated...

 

Again - not saying anything about either doctor one way or another - I have no experience with them. Just thought it should be clear which Dr. L is being spoken of.

Edited September 12, 2012 by airial95

[dut]

Hi - I too would be wary if the basis of the dx was simply the lack of an OCD component.

 

My classic PANDAS dd9 will have flares at times that have no OCD component. At the moment for instance she is ticcing away but no OCD (we are in week 8 or so of flare)

 

She had a couple of nights at the start with some fears but, hey, hard to tell that with a 4 yeat old. Also my other PANDAS child started so early with it, 2 or so or maybe earlier, and we saw no OCD until sometime this year when 5. He was a stutterer, bit ticcy, ADHD looking. The whole gamut. I would have even missed the little bit of OCD that we see if it weren't for my dd and knowing what to look for.

 

While I agree with Chemar that folk on the internet shouldn't blow a dx out of the water, I do feel we can caution and I'm not sure if it is Dr Latimer if this Dr is at Yale, I thought she worked somewhere else.

[Chemar]

TS and PANDAS are not mutually exclusive so yes, someone with "classic" TS may indeed also have PANDAS and v.v.

I fully understand that, especially because of the fact that some physicians still don't recognize PANDAS as a valid dx ,and others who misdx or are totally ignorant about it...the natural instinct is to immediately try to refute things like this....so that is why I am just sounding a gentle word of caution as sometimes we can cause a lot of confusion even when our intention is just to help.

[peglem]

I assumed Dr. Leckman because of the Yale local as well. But, didn't the PANS white paper say that OCD must be present for a PANS dx? So, maybe he's going with the new criteria. I remember this was an issue discussed on this forum when the paper came out, that people with primary tic presentation would not fit the new criteria.

[MomWithOCDSon]

I assumed Dr. Leckman because of the Yale local as well. But, didn't the PANS white paper say that OCD must be present for a PANS dx? So, maybe he's going with the new criteria. I remember this was an issue discussed on this forum when the paper came out, that people with primary tic presentation would not fit the new criteria.

 

I just thought it would be worth mentioning here that, at this past summer's IOCDF conference, Dr. Swedo acknowledged that her team had to make some compromises with respect to the PANS criteria and that they had, reluctantly, removed primary tics/TS from the criteria. If I recall correctly, however, she indicated that she regrets having made that "deal." Vickie, do you recall this commentary? Do I remember it correctly?

 

I'd also like to suggest that it's possible, as many of us parents have experienced, that given the various comorbidities our kids can exhibit, sometimes you (and/or your doctor) can get caught up in the primary presentations, very focused on that, and thus the other, more subtle components escape us or get bundled into the primary behaviors even if they could be distinct on their own. For example, my DS's primary behavior was OCD and so for a very long time, I would have told you he had no tics whatsoever. But the truth is, as we began to tease out his behaviors and the treatments, and I participated here and shared thoughts and experiences with other parents, I realized he did, actually, display tics as well as OCD in the depth of his PANDAS, like leg-dragging, repeating words over and over, etc. Conversely, I've also read many posts by parents of kids who's primary presentation has been tics, but they post about behaviors that, to those of us immersed in the OCD world, would readily be recognizes as OCD-oriented, but they're asking, "What is this?!" because they've had less exposure to that side of the symptomology.

 

I like Dr. L. from Yale, but I'm not sure your child wouldn't benefit from a second opinion.

Edited September 12, 2012 by MomWithOCDSon

[1tiredmama]

I'd like to chime in here to say that my children are patients of Dr. Latimer. Neither of my kids has OCD, and she assures me that we are dealing with PANDAS. In fact, ds did not even start out with tics, they showed up 7 years into his presentation. Yet, now, he has just about every symptom of PANDAS, but the OCD.

 

At our appt just 2 weeks ago, I asked again about the validity of dd's dx because she has neither OCD nor tics (yet,) but Dr. Latimer assured me that there is more than one or two presentations. My kids are not examples of classic PANDAS, but THE Dr. L. has no doubt of what we are dealing with.

 

The kids are responding to treatment. Ds has made progress with abx, and ibufrofen is taking the edge off of dd's panic when nothing else would.

 

I'm not here to say whether or not your doctor at Yale is on the right track or not. I am here to set the record straight on PANDAS presentation without OCD as there seems to be some confusion. From Dr. Latimer's mouth to my mine, here you have it.

 

I am editting this, after reading some later replies, to add that ds actually does have some OCD. He went through a period of trichotillomania and he has a seasonal horrible Christmas obsession. This is important to add for accuracy, but also because I did not know these were OCD behaviors until I learned from hanging out here (thanks, Fixit!) It is easy to miss OCD in some kids. In any case, I never reported this to Dr. L, and she didn't need it for a dx.

Edited September 12, 2012 by 1tiredmama

[Fixit]

I have not read all or fully read the replies.

Not trying to start a fight, and I’m not looking for anyone else to agree with me..as I am secure in my position. I NEED to put this out there. AND a heads up that this reads VERY BITTER…BECAUSE I AM!!!!!!

 

I do not know what DR you saw, BUT as mother of 3 ticcers who have gone into complete remission with abx, YOU DO NOT NEED ANY OTHER SYMPTOM TO HAVE PANDAS/PANS/possible lymes. (THIS IS MY OBSERAVATION and i don't care if the top DR or the POPE says I am wrong)(I do love that even if the top pandas dr’s disagree with me…they will at least listen and not roll their eyes(I do have 2 neuro’s and other Dr’s dx my kids with pandas….but before that,(not that it would have changed my mind, it just makes my struggles a little easier) MANY DRs told me there is no understanding for TS and that I could not possibly have such strep/tic incidents occur)

Ds12 who is not in remission currently(myco p was the new trigger), only showed ocd in the form of Trichotillomania that comes and goes about once a year with this last onset 3 years ago. All prior episodes were just tics. Same for my other 2 ticcers(5 and 9).

 

You are the parent and need to do what you feel best. May the roads rise to meet you on whatever path to decide to take. But please do not be bullied or shamed by the "PHD" attached to their names nor the fact that you went to "YALE". They are all just people who are only allowed to look at certain parameters and are not here on the ground with our kids. Nor do they have the observational skills that I have as parent with a vested interest in my child’s wellbeing and health. (Nor will they listen to me because since I could not possibly postulate or correlate cause and effect without a PHD)(Can you tell I have a high distain for most DRs?) I have had many CLEAR CUT onsets of strep/tic scenarios, so for me it is easy to stand firm and fight the fight for my children. And the 2 times we have done steroids for my oldest have been small miracles that brings tears to my eyes as I type this, since they were short lived.

 

I believe it was Socrates, (looking for reference and I will not be nearly as clear and concise as I should be) (this was in a recent documentary) how even though one person in a group of many, may be the only nay sawyer, does not make them wrong. It is difficult to stand and continue to go against what the"educated", or the "specialists" in a particular field, as you may truly respect their intelligence, you wonder how can you be right in your opposing view. What am I not seeing that they see? But that is what makes you smarter, as you question yourself, but come back to the same answers. Most will not question themselves, especially as others might start to agree with them. You will get ridiculed, abandoned, fired and you may doubt yourself, since group mentality is powerful and it herds the masses and the comfort that the masses feel in that in group mentallity. There needs to be contrarians to open the window to get outside the box that these DR's can't seem to get out of on their own, or out of the way of their own ego, or political affiliations with drug companies, the government or the boss.

 

TS is just a particular child/person body’s way of telling you that something is in dysbiosis, an immune system gone wrong or into overdrive.

 

As a mom of ticcers, please look into vitamin, mineral, amino acid deficiencies, food/environmental allergies, chrones, parasites, other infections and teeth, teeth, teeth!!!!! The list is long. It takes time. It may takes longer time to heal with multiple onsets, multiple triggers and age.

 

You can definitely gleen great information from the other boards, ie lymes, ts, ocd, etc on this site.

 

I AM NOT a Doctor.

[norcalmom]

This was my fear when the new PANS paper was written. Dropping Tics - is a political decision - not a medical one. Swedo said - and I QUOTE (well, from memory) at the IOCDF meeting a few months ago - "Julie Rappaport TOLD me that including the group of ticcers would cause problems and push back from the tourettes folks. I should have listened to her her then and avoided all this "controversy" - but - being a young person and knowing that if I didn't include the tickers that I would be leaving out ONE THIRD of the kids- I included them -against her advice. And now here I am having to redo the study without the tics group so many years later" .

 

I'm really glad she included them because that is the primary symptom my son presented with, and how I found out about pandas.

 

Leckman wrote the PANS paper with Swedo. He's the one at Yale. Unless there is another L doctor there (there may be). Leckman is also writting the new pandas study with Swedo. But he also wrote this paper: http://www.tsplusblog.com/2011/01/new-research-calls-connection-between-strep-infections-and-tics-and-obsessive-compulsive-symptoms-into-question/ . I'm not sure exactly where he stands on thing exactly.

 

I'd just be aware of the above, and I'd personally exhaust the pandas dx before accepting a tourettes dx. Tourettes isn't a diagnosis. It a name for a symptom. Kids been ticcing, and we don't know why. Well, in some kids we DO know why. Its pandas. Pandas is not the dx of exclusion - tourettes is the dx of exclusion. And you have some options if you are in the pandas group to get at the cause of the ticcing. It isn't easy or as straight forward as it should be, but if your doctor is telling you he can't have pandas becasue he doesn't have OCD - he's wrong.

 

Does you child ONLY have tics - an NO other symptoms? Bedwetting, insomnia, fears that are out of the ordinary, asks alot of reassurance question?, extreme moodiness or irritability, rage, increase in day time urination? ITs really hard to tell what is "normal" for a 4 year old.

 

I think the most common ones in kids your child's age were a night time disturbance (new bed wetting in a child that had been dry OR insomnia/nightmares) and separation anxiety. IF you child ONLY tics - and everything else is complely normal (all labs were negative) - and nothing changes when they get a cold - the tics don't increase dramatically and there are not other symptoms...and antibiotics didn't help..then maybe your Dr L is right. But, if not, perhaps another opinion as suggested above !

[AmySLP]

I know we talked about getting together to chat once you got back from Yale. I know your dx. Has changed from what you suspected, but being the mom to a child who first presented with tics and continues to have tics primarily I have been there. My daughter was four at onset...all symptoms were behavioral but the only one that stuck out like a sore thumb to me were the facial tics at the time. When we got to Dr.Latimer, she pointed out that the quirky arm movements and Tongue movements were chorea. Review of history with her also made it clear that my daughters repetive behaviors and irrational fears were actually OCD. I did not know how to recognize that...especially in my four year old.

 

I know where these moms are coming from....as a mom to a child whose primary symptom is movement disorder, it is so upsetting to be excluded from the PANS dx. Because many of us have been at this a long time. Many of us have seen our kids respond to meds and get better.

 

PM me if you want to talk by phone. I have a great pediatrician in Binghamton who is a believer.