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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." dry.gif 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. -_-

 

Dr. L at Yale must be Dr. Leckman.

 

I completely agree with MomwithOCDson (also norcalmom and the other posters)!!

 

Also everyone needs to remember that PANS isn't replacing PANDAS. PANDAS still exists (and doesn't require OCD, can be OCD and/or tics). PANS is a research criteria (so Swedo and other researchers could study acute onset OCD without the Kurlans and Singers messing with them, or having to "prove" a strep infection.)

 

I should add, when the "Cunningham Test" becomes commercially available, consider having that run. One of it's strengths is differentiating PANDAS from non-PANDAS tics (eg TS).

 

Also, throat culture everyone in the household (now! -- have them do the 72 hour culture if the rapid is neg). Repeat the throat cultures if there is any change in behavior/increase in tics.

 

What labs or tests did they do at Yale?

 

In reading over your orginal post (before you went to Yale), I would say your son could be PANDAS until proven otherwise. (Here's the link to the post if others want to read it http://www.latitudes...=1 )

 

I cut and pasted part of the orginal post (for others)...it doesn't sound "tic only" IMHO, also correlated with strep infection (did that ever really clear from the child or household?):

 

It all started in April this year when B started a shoulder roll. I thought his shirts were too big, so I got out last years smaller size and that didn't fix the problem either. We went on a family vacation shortly after the shoulder roll started and he just wasn't the same B. Upon return, he was dx with Strep after a week of high fevers and a miss dx in the local ER. We treated him with antibiotics and then the real changes started to take place. Throat clearing was nothing new. He had been doing that for a year or more. The neck rolls, the frequent urination the repeating of words, Mom, Mom, Mommie, the nose sniffing, finger and toe nails peeling off. The list goes on...

 

I took him to the local Peid and they said he will out grow this. My DH and I KNEW there was something off. You see, I could learn to deal with the Tics. It's the behavior side of the PANDAS that seems to knock you off your feet just when your least expecting it that we are suffering with right this minute. I asked the PA about PANDAS and she followed up with the DR and they said we will refer you to a Neurologist. We saw the local Neurologist and at the same time I was on a mission to get someone to listen to what we had to say. This child was clearly not the same as he was in March of this year, and no one can tell me it's just going to miraculously go away. When we saw the Neurologist, he did in fact say that going to Yale to see Dr. L was perfectly right. AHHH! Finally, someone could see what we as parents were seeing.

 

After a long wait, with symptoms coming and going, after being on Penicillin for almost two 1/2 months now...we head East to see the specialists. In the last week, the behavior issues, ie. hitting, flat out destructive behavior countered with baby like whining has started to rear its ugly head.

 

note: I see frequent urination is mentioned. That is a classic PANDAS symptom. It isn't a TS symptom. Also, what do you mean by the "behavior side of PANDAS"? Do you mean rages/tantrums, defiance, oppositional behavior, anxiety, ADHD-type behavior? Also when anyone says their child is "Clearly not the same" as weeks or months previously, that reeks of PANDAS.

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Wow! So many responses I don't even know where to begin. We saw Dr. Leckman at Yale. He was absolutely fantastic. I was confused bc the tics strep and the behavioral issues all came in a very quick period of time. I haven't read through the leaflet that Dr. Leckman gave us connecting Strep with TS however there is a wealth of information and I feel I need to read, read, read. I emailed Dr. T in NJ today asking: - DS4 has only been off meds for 3 days and behavior is going backwards to say the least. The shoulder rolls are starting again. Is this coincidence? Could this be in relation to just going back to school. High stress? Should I get a second opinion? Dr. T simply said that PANS comes on very quickly and it's important to treat it promptly.

 

I then reached out to my husband and told him I emailed Dr. T. He was quite angry. I'm just scared. I want a solution. I want my son to be the way he used to be. My DH said he is NOT the same, you are looking for someone to give him a pill and make this go away. It's not going to happen. He asked did I believe in Dr. Leckman? I thoroughly do. I know he is the best. I think the strep link is throwing me off and I need to read more. Dr. L said that the reason he does NOT fall in the PANS category is bc he lacks the OCD. I'm scared girls. I can't fix this and to be frank sometimes don't even want to be around him bc the behavioral issues are so out of control.

 

I also learned from Dr. L that the only way to help Brennan is to educate and change our parenting. The tics don't hurt. You are hurting him by coddling the behaviors. He is ok, now learn to deal in a productive way with the ADHD. I know I didn't answer each and every question. I will go back through and try to fill in any blanks. I thank you for all of the bits of info. I picked up explosive child and am smiling bc some points are soooooo close to our family life right now. Be Well! Talk to you all soon. Night!

 

KK

 

I will add that there weren't ANY tests per say done at Yale. We filled out endless docs on history of DS4 as well as family history to include pregnancy, labor and delivery. No blood tests have ever been ordered. I also will add that Dr. Leckman said B didn't meet the PANS criteria bc he didn't have OCD. This is what is so hard for me to comprehend. If you pull out the PANDAS criteria, my son fits the mold. I have to go with my husband for the next week and watch. Next Tuesday we will revaluate and make another decision.

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Wow! So many responses I don't even know where to begin. We saw Dr. Leckman at Yale. He was absolutely fantastic. I was confused bc the tics strep and the behavioral issues all came in a very quick period of time. I haven't read through the leaflet that Dr. Leckman gave us connecting Strep with TS however there is a wealth of information and I feel I need to read, read, read. I emailed Dr. T in NJ today asking: - DS4 has only been off meds for 3 days and behavior is going backwards to say the least. The shoulder rolls are starting again. Is this coincidence? Could this be in relation to just going back to school. High stress? Should I get a second opinion? Dr. T simply said that PANS comes on very quickly and it's important to treat it promptly.

 

I then reached out to my husband and told him I emailed Dr. T. He was quite angry. I'm just scared. I want a solution. I want my son to be the way he used to be. My DH said he is NOT the same, you are looking for someone to give him a pill and make this go away. It's not going to happen. He asked did I believe in Dr. Leckman? I thoroughly do. I know he is the best. I think the strep link is throwing me off and I need to read more. Dr. L said that the reason he does NOT fall in the PANS category is bc he lacks the OCD. I'm scared girls. I can't fix this and to be frank sometimes don't even want to be around him bc the behavioral issues are so out of control.

 

I also learned from Dr. L that the only way to help Brennan is to educate and change our parenting. The tics don't hurt. You are hurting him by coddling the behaviors. He is ok, now learn to deal in a productive way with the ADHD. I know I didn't answer each and every question. I will go back through and try to fill in any blanks. I thank you for all of the bits of info. I picked up explosive child and am smiling bc some points are soooooo close to our family life right now. Be Well! Talk to you all soon. Night!

 

KK

 

I know this is tough, and the last thing I want to do is foment discord between you and your DH over your son's diagnosis and treatment. I will say, though, that my DH was not entirely on board initially, either; he has what I tease him about is an "Authority Syndrome," so when someone with an impressive degree hanging on a wall tells him the sky is orange, he frequently goes against his better judgment and even his intuition and agrees, "Yep, the sky is orange." It drives me nuts.

 

So when we were told our DS had OCD (overnight, I might add), and later that he had all these various cormorbid conditions along with the OCD, also overnight (like ADD, PDD-NOS, etc.), DH's initial tendency was to buy into the "experts" and sign on to the drugs, therapy, etc. that was supposed to make DS functional. Trouble was, they didn't make DS functional. We tried them because, at the time, we 1) couldn't find a strep link and 2) couldn't get anyone in our area to seriously consider and/or test for something like PANDAS.

 

Fast-forward 6 years later and thanks to folks like the ones here, PANDASNETWORK, etc., we find some clues and options for getting DS diagnosed (I'm using the "royal 'we'" here, because really, it was just me -- DH was mentally/emotionally absent at the time, but at least he didn't ridicule me or try to stop me). Then we start abx treatment and, voila, not 100% overnight, but dramatic difference practically overnight (with 48 hours), and continual progress back to functional and happy over the next 2 years. All because of PANDAS treatment and supporting therapies. NOW the doctors have dropped the "comorbid alphabet" they had previously labeled DS with (ADD, PDD, etc.), and DH is beyond on-board; he's my co-pilot. ;)

 

So, long way of saying, follow your gut. Even compassionate, brilliant doctors like Leckman make mistakes, and you know your son far better than anyone else, especially a doctor who met him within the last 24 hours and spent a total of maybe what, a few hours, with him, at most? And hang in there. You are not alone, and you will receive more support and ideas and suggestions than you'll know what to do with should you continue to ask. :P

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KK,

 

I am sorry--I cannot hold back on this one. I know nothing about Dr. Leckman, but there really appears to be reason for high suspicion of PANDAS. Rejecting PANS because of no OCD seems far too narrow, and, in any case, as others have pointed out, OCD is not needed for PANDAS dx.

 

Your DH reminds me so much of mine--the doctor has spoken, why are you questioning? Three years ago we got a psychiatric dx for my DD, now 19, at one of the top hospitals in the country and as she has gotten progressively worse my DH has said how can you think you know better than they? His solution would be to put her in a psych facility for an extended period. (One of his favorite phrases is "Let's face it" with the implication I refuse to face the fact of her psychological problems.

 

But I have nonetheless persisted. In the last two weeks she has been dx'ed as PANDAS by both Dr. T and Dr. L (the one in MD). And DD has another serious neurological issue Dr. L is now investigating (with agreement from Dr. T and a neurosurgeon) that every doctor we've seen over the past year and a half hinted was psychosomatic (and I was chided for feeding into it). Believe me, no psychiatric facility in the country will investigate or even contemplate medical reasons for a person's behavior--I've checked as I was trying to find a way to accommodate my DH's views while satisfying my own very strong suspicion of a serious medical problem. It's as though none of these places have ever heard of a neuropschiatric illness. But I digress.

 

I really hope Dr. Leckman didn't suggest that your parenting skills were at the root of your DS's behavior issues, though your post seems to imply that. The fact is that almost no parent is prepared to deal with these sudden behavior changes owing to PANDAS/PANS. Books can be helpful in learning how to deal with these behaviors, but that does not mean one can attribute the behaviors to poor parenting.

 

I really think you need a second opinion--this is done for medical conditions all the time and this is no different. You are seeing your DS regress after a few days off abx. Honestly, you owe it to him to see if in fact a pill will make him better (okay--not just a pill, obviously more complicated than that). Dr. T is great and you will not go wrong consulting with him.

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I took my DS to see a well respected neurologist in our area. My son's behavior was out of control and we were trying to find out why. I actually thought maybe he had a brain tumor, as all this had started so suddenly and his reactions after a flumist were coincidental. She told me my DS's neurological signs were all intact, there was no need to do anything like an MRI and that "if you will be more firm and consistent in your parenting, your son will get better". I knew the minute she said it, she had no idea what we were going through.

 

Fast forward 3 years, my son did get better......with PANDAS treatment.

 

I highly encourage you to continue looking into PANDAS. I think you will find your answers and your treatment there, with all due respect to Dr L (Yale). I'm no doctor, but I think he's wrong. Its not the first time I've thought a doctor wrong and I was proven to be right. Many other parents on this forum can say the same thing. Hang in there. Go with your gut.

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I highly encourage you to continue looking into PANDAS. I think you will find your answers and your treatment there, with all due respect to Dr L (Yale). I'm no doctor, but I think he's wrong. Its not the first time I've thought a doctor wrong and I was proven to be right. Many other parents on this forum can say the same thing. Hang in there. Go with your gut.

 

I totally and completely agree with everything nicklemama, MomwithOCDson, and ko's mom have said.

 

And I'm going to say it again, PANS didn't replace PANDAS. PANDAS does NOT require OCD. Only PANS does. (Not to say that kleek3's son doesn't have OCD...sometimes defiance can present as OCD, sometimes little kids "hide" their OCD.) When my dd was younger, her OCD at first looked more like "difficult behavior" and manifestested as bossy behavior, tantrums and rages (partly because things had to be a certain way).

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I agree with what others have written. Dr. Leckman is a wonderful researcher. He tends to be more in the "middle" when it comes to PANS - not afraid to say that PANS exists (he is one of the authors of the PANS paper http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf ), or that PANDAS exists or that we need to know more ( http://www.njcts.org/docs/ImmunobiologyofTDandPANDAS.pdf )... but also not afraid to be a part of research studies that do not back up all of our "theories" ( http://www.ncbi.nlm.nih.gov/pubmed/21241948 ).

 

Research, however, is not the same as clinical practice. One needs to apply strict rules to research studies to make them "pure" .... but real-life kids are not so pure... and the criteria change with the times and political waves. We cannot let that stop us from getting the best help for our children.

 

I think most parents of children with TS would agree that OCD is a part of TS - even if it is NOT infection-related. I pulled this from the pinned threads at the top of the forum http://www.latitudes.org/forums/index.php?showtopic=6153 I know that list really helped me to understand how many of my DS's behaviors were OCD when he was younger. I am not a wimpy Mom - I had many years of working with kids under my belt and a well-functioning older daughter when I had to deal with my son's "quirks", insistence, separation anxiety, and irrational fears from a young age. Not understanding that it was OCD was a huge problem as I thought I needed to be more firm - which only set up a power struggle and discord in the home. Eventually I just started giving in or even anticipating his rituals without realizing it to keep the house calm. The fact is that I needed to address my son's immune system AND his behaviors and I was not doing a very good job of either.

 

My son is now 15 and he is finally receiving the immune treatments he needs. The ramifications of 14 years chaos and poor medical care have taken its toll though. My husband and I recently separated. My daughter has missed years of having a functional family, and my son is 15 years old and very bright and social, but is just now developing school and work behaviors that he should have developed 5 or more years ago.

 

My suggestion to you is to get a second opinion about the medical piece, AND to learn as much as you can about parenting a child with ADHD/OCD/ODD. It sounds like you need a two-pronged approach.

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UGH! :angry: I have a ticcer PANDAS son. (who had ADHD symptoms as well at initial onset) This makes me angry ....what is going to happen to the ticcer kids?? Ignored? Undiagnosed? Left to suffer? I also have a PANDAS son who presented with the works...OCD, tics, anxiety, hallucination, etc. If it weren't for his presentation, my olders son may have likely never received proper diagnosis and treatment. Both presented 2 weeks apart from same strep infection. Neurologists at CHP told me they were on path of Tourettes and come back in 4 months and we can medicate. Hummmm..BOTH boys suddenly developed Tourettes at the same time. I think not! Never went back. Got a PANDAS diagnosis and treatment and my older sons tics basically went away in 24 hours......bumpy for a couple years (mild) with illness...now in remission for almost 2 years. No meds except abx. I was told by Dr. C znd Dr L (in MD) that if my older ticcer son was not properly diagnosed and treated...he would indeed, most likely, have ended up with a Tourettes diagnosis. Dr. L does not require OCD, he is our treating physician. Personally, I would not accept the diagnosis of TS just yet....seek second opinions from other experts. Improvement with Penicillin and backsliding off.....big sign of PANDAS.. and also a hopeful one because your child...at this point, is still responsive to abx. Don't lose that window. (Penicillin is largely not effective in symptomatic PANDAS kids....it works for some, but, I would surely use a stronger abx) TS because he does not have OCD! Ugh.. that just breaks my heart....(and I know PANDAS diagnosis exists....aside from PANS...but, you can clearly see how they are all interchanged and things will just get worse with all the docs mixing it all up)

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My son is TS not PANDAS but he has always had OCD (and ADD) both of which are also recognized as fairly common co-morbid TS conditions....so I am not sure why the absence of OCD yet the presence of a strep history would result in a TS not PANDAS dx ?

 

When my son was first dx TS (12 years ago now) I heard about PANDAS and went to a number of physicians until we finally got to see one of the few physicians who recognized and researched and treated PANDAS. My son had no history of strep at all, but he presented with many of the symptoms so I was determined to go to a PANDAS specialist.

 

I would agree with others that you may need to get an accurate evaluation by a PANDAS specialist, especially with that history of strep and the current regression again off the abx

 

kleek3, I do hope that you and dh can unite in all this

 

As an aside.....

I wonder if perhaps this thread has indicated how confusing it can be to only use Dr initials here. I know it is often easier than writing out the names, and has maybe become habit, or that some even think it is required here.... but confusion obviously arises when more than one doc has the same last name initial, plus confusion for newbies too not knowing who the initials refer to when they are desperately seeking PANDAS docs! I know admin prefers members not to "trash" docs by name here on the forums (best keep those to PM ;) ) but in a general discussion it may bring more clarity for everyone to know from the start what doc is being referred to IMHO

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As an aside.....

I wonder if perhaps this thread has indicated how confusing it can be to only use Dr initials here. I know it is often easier than writing out the names, and has maybe become habit, or that some even think it is required here.... but confusion obviously arises when more than one doc has the same last name initial, plus confusion for newbies too not knowing who the initials refer to when they are desperately seeking PANDAS docs! I know admin prefers members not to "trash" docs by name here on the forums (best keep those to PM ;) ) but in a general discussion it may bring more clarity for everyone to know from the start what doc is being referred to IMHO

Chemar,

I agree that the confusion on names is a problem. But I want to offer a different view of why using a doctor's full name may not be such a great idea. The handful of docs who have built their practices on Pandas generally use prophylactic antibiotics as part of their protocol. This practice is vilified in general media and by professional associations. In the lyme world, using a doctor's full name and discussing his/her treatments and patient discussions in an open forum has led to those doctors being criticized and in some cases, being brought before medical boards to defend their protocols. It scares doctors away and makes them afraid to try "non-standard" protocols even when overwhelming anecdotal evidence suggests it's the right thing to do. In CT, it became such a with hunt that they eventually passed a law protecting a doctor who prescribes long-term abx. Few states offer such protection.

 

So the etiquette on lyme forums is to use a doctor's initials and if more details are wanted, you use the private message option or clarify with the state that the doctor is in. In this case, Dr L in CT not Dr L in MD. It's why you see "our LLMD" instead of using a name. If you want to know who that LLMD is, you PM the person.

 

I personally think it's fine to say "we have an appt with Dr Leckman at Yale, can anyone PM me some info." But it would be unwise, IMHO, to post opinions, excerpts from patient conversations or protocols in a thread that uses that doctor's full name. But it would be ok to say "Our Pandas specialist said..."

 

There are so few doctors willing to treat. And a few very passionate anti-pandas people who may lurk, or disgruntled parents in a divorce situation, looking for opportunities to use hearsay against a doctor and send a warning to other doctors. Look at Dr Jones in Lyme, Dr Usman in autism, who's currently facing litigation over advising a patient take vitamins (brought about by an ex-husband who objects to the wife's choice of treatments and the expense - not over whether the child improved (which he did)).

 

So that's the flip side. Personally, I'll take the confusion over the risk. Just my perspective.

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Just my opinion, but I think it would be incredibly difficult to differentiate between OCD and TICs at the age of four. A compulsion can seem VERY tic-like in our experience. We are now just figuring out some of the differences and my daughter is 12. There are many doctors that do not believe in PANDAS. I'm not sure about your doctor, but I would highly recommend seeing a PANDAS doc to get his/her opinion too. Dr. B is very close to Yale (if you are in that area) and he takes insurance. Good luck with whichever route you and your husband venture. I know it is incredibly difficult when you are both not on the same page. Best wishes always.

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Yes I understand that there can be problems over specifics, which is why I had said in a "general" discussion.

But, just as happened here, the confusion over the name led to even more speculation and specifics than may otherwise have been given?

I guess things are more intense in the PANDAS & Lyme fields than I am aware as when we first started investigating, Dr Murphy, Swedo et al were freely mentioned

But whatever is best for the overall good of the patients and the doctors willing to treat them is obviously what should be done

 

 

As an aside.....

I wonder if perhaps this thread has indicated how confusing it can be to only use Dr initials here. I know it is often easier than writing out the names, and has maybe become habit, or that some even think it is required here.... but confusion obviously arises when more than one doc has the same last name initial, plus confusion for newbies too not knowing who the initials refer to when they are desperately seeking PANDAS docs! I know admin prefers members not to "trash" docs by name here on the forums (best keep those to PM ;) ) but in a general discussion it may bring more clarity for everyone to know from the start what doc is being referred to IMHO

Chemar,

I agree that the confusion on names is a problem. But I want to offer a different view of why using a doctor's full name may not be such a great idea. The handful of docs who have built their practices on Pandas generally use prophylactic antibiotics as part of their protocol. This practice is vilified in general media and by professional associations. In the lyme world, using a doctor's full name and discussing his/her treatments and patient discussions in an open forum has led to those doctors being criticized and in some cases, being brought before medical boards to defend their protocols. It scares doctors away and makes them afraid to try "non-standard" protocols even when overwhelming anecdotal evidence suggests it's the right thing to do. In CT, it became such a with hunt that they eventually passed a law protecting a doctor who prescribes long-term abx. Few states offer such protection.

 

So the etiquette on lyme forums is to use a doctor's initials and if more details are wanted, you use the private message option or clarify with the state that the doctor is in. In this case, Dr L in CT not Dr L in MD. It's why you see "our LLMD" instead of using a name. If you want to know who that LLMD is, you PM the person.

 

I personally think it's fine to say "we have an appt with Dr Leckman at Yale, can anyone PM me some info." But it would be unwise, IMHO, to post opinions, excerpts from patient conversations or protocols in a thread that uses that doctor's full name. But it would be ok to say "Our Pandas specialist said..."

 

There are so few doctors willing to treat. And a few very passionate anti-pandas people who may lurk, or disgruntled parents in a divorce situation, looking for opportunities to use hearsay against a doctor and send a warning to other doctors. Look at Dr Jones in Lyme, Dr Usman in autism, who's currently facing litigation over advising a patient take vitamins (brought about by an ex-husband who objects to the wife's choice of treatments and the expense - not over whether the child improved (which he did)).

 

So that's the flip side. Personally, I'll take the confusion over the risk. Just my perspective.

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