Pandas, Tics, Tourettes

[myrose]

I am wondering if everyone can give me their story or explanation of the differences between Pandas, Tics and Tourettes.

I know the titers play a big part in Pandas but from what I understand until someone knows their baseline level, than its hard to tell if its elevated or not.

I also know about the onset of symptoms. With Tourettes I know a vocal has to be present along with motor.

 

I am just confused and of course with all the expanding knowledge of pandas I have to wonder if my child was properly diagnosed.

Pandas in her case was ruled out by her neurologist becasue of the titer issue alone. She has a history of sore throats and tested positive for strep when she did not even have any symptoms of it.

Before she started on Topamax she did have the ocd signs that came on one day out of no where while attending pre-school. It showed every once in a while after that. All different degrees. She had anxiety thats for sure. She used to bite her inside lip and always picked the skin at the side of her fingers. Urge to urinate was there as well.

 

Lastly, other than the steroid burst being a sign of pandas if it shows benefit....is there any other way that would lead one to lean towards Pandas??

Thanks ahead for everyones input. This Pandas thing is really bugging me. Especially about the brain after time not being able to repair.

What would someone do to be sure then????

[dut]

Hello

 

Our 5 yr old dd had sudden onset, severe ocd and behaviour changes and mild tics in April 2008. 1 week later she tested positive for strep throat. After 2 weeks of amoxicillin she was at say 15% symptoms. At the same time she had her ASO and Anti-DNnase B titers done. They were not only normal but very low. If we looked at titers alone she isn't PANDAS but based on the diagnostic criteria for PANDAS which doesn't call for high titers, our dr's and our belief she is PANDAS. This was reinforced when her symptoms started to return with a perianal strep infection. After treatment with azithromycin she has been symptom free for 3 months.

 

I remember someone posting (but can't remember who, sorry) a link that talked about titer testing and said that ASO and Anti-DNase B alone were not enough that there are more that should be tested for and that you can't rule out PANDAS without these. Hopefully, whoever posted that can repost or point to the original. The Swedo paper on antiobiotic prophylaxis also talks about titers being blunted by early initiation of antibiotics.

[Buster]

Hi Myrose,

 

 

I am wondering if everyone can give me their story or explanation of the differences between Pandas, Tics and Tourettes.

 

Tics can be verbal or motion abnormalities and are actually pretty common in kids. Many tics are self limiting and go away on their own.

 

Tourettes is diagnosed as:

1) having both multiple motor tics and one or more vocal tics that must be present at the same time (although not necessarily concurrently).

2) the tics must occur many times a day (usually in bouts) nearly every day or intermittently over more than 1 year, during which time there must not have been a tic-free period of more than 3 consecutive months;

3) the age at onset must be less than 18 years;

4) the disturbance must not be due to the direct physiological effects of a substance (e.g. stimulants) or a general medical condition (e.g. Huntington's disease or postviral encephalitis).

 

Thus to diagnose Tourettes you have to wait a year with monitoring and have no remissions.

 

PANDAS is diagnosed as (Swedo):

1) presence of obsessive-compulsive disorder, tic disorder, or both;

2) with prepubertal onset (typically between 3 and 12);

3) sudden, severe symptom onset and an episodic course characterized by remissions and abrupt exacerbations;

4) a link in time between either the symptom onset or exacerbation and a GABHS infection;

5) Presence of Neurologic Abnormalities During Periods of Symptom Exacerbation (movement disorder, choreiform movements, ...)

 

It is the episodic and severe exacerbations of PANDAS that is so telling. Swedo and all of us can tell you this isn't the normal waxing and waning of OCD symptoms, this is like your kid is possessed. Almost all of Swedo and Snider studies were on OCD kids with CYBOCs scores changing +15 pts over the exacerbation.

 

Tourettes is defined by the presence of tics and not OCD. Many Tourettes kids do have OCD, but it is not part of the diagnostic criteria. Recent studies on Tourette kids seem to indicate that their exacerbations are primarily in Tics and have low changes in CYBOC scores (usually 1-3 pts).

 

I know the titers play a big part in Pandas but from what I understand until someone knows their baseline level, than its hard to tell if its elevated or not.

 

Acutally titers are not part of the diagnosis of PANDAS. They are techniques for looking for the evidence of a prior strep infection. A positive throat culture is sufficient to meet the PANDAS criteria. People with positive throat cultures that are left untreated can still have falling ASO titers with colonization and invasion of strep.

 

Pandas in her case was ruled out by her neurologist becasue of the titer issue alone. She has a history of sore throats and tested positive for strep when she did not even have any symptoms of it.

 

Asymptomatic strep is often referred to as carriage. Experts on GABHS now think that carriage is not as benign as previously thought. In the carriage state, there is colonization and adhesion with production of exotoxins and particularly streptolycin O (which enables invasion). It is extremely likely that there is some invasion but this may be small or controlled. Rising titers are a good indicator in the 1-4 week (up to 8th week for AntiDNAse-B ) ; however, outside of that time, it is just not known what the titers mean. You can have an active infection with falling titers if the infection is not treated. So carriage that goes to infection (such as with a tooth extraction or dental work) could yield very odd titers since there has been long term exposure.

 

As a reminder, it is not the streptolycin O that is thought to be the problem for PANDAS but rather a failure to supress an antibody that goes after GlcNAc -- a carbohydrate on the strep A. The problem is that carbohydrates/patterns similar to GlcNAc are all around the body, so the antibody can go after the wrong stuff. What is thought to be the problem is that the normal suppression T cells and B-cell suppressors aren't taking out this antibody to GlcNAc so once triggered with a little bit of strep carbohydrate, the B cell starts replicating like crazy causing attacks on non-strep cells.

 

Before she started on Topamax she did have the ocd signs that came on one day out of no where while attending pre-school. It showed every once in a while after that. All different degrees. She had anxiety thats for sure. She used to bite her inside lip and always picked the skin at the side of her fingers. Urge to urinate was there as well.

 

These are all consistent with the CYBOC scoring criteria for OCD. However, the question would be the severity of the symptoms. Everyone with OCD has good and bad days. What is telling in PANDAS is the severity. Fear/need to constantly urinate is a documented precursor. It again depends on the severity and the temporal locality to a positive culture/signs of strep.

 

Lastly, other than the steroid burst being a sign of pandas if it shows benefit....is there any other way that would lead one to lean towards Pandas??

Thanks ahead for everyones input. This Pandas thing is really bugging me. Especially about the brain after time not being able to repair.

What would someone do to be sure then????

 

Well, certainly the steroid burst helps to show that it is an immune response (or an inflammatory response). In my dd case, we got a throat culture (she was positive throat and perianal) and then after trying a couple of antibiotics to wipe out the strep, finally put her on azithromycin. At time of culture her ASO was 31 and her anti-dnase B was 149 and she was asymptomatic. Many doctors would have said this was a carrier condition. But PANDAS doesn't say anything about such a condition nor about how high the titers are, but rather evidence of an infection. The culture is enough. If you dd is positive, I'd certainly recommend having her treated.

 

In our case, we found our dd got infected almost 2 months before. At the time of the throat culture she was absolutely psychotic with full fledge anorexia nervosa and suicidal statements. It was a nightmare. When we had titers drawn a month later her ASO was steady 28, but her anti-dnase B was now < 60. What I mean here is we were already on the falling side of the titer. No one (and I mean it, I've checked) knows how long these titers stay elevated or what keeps them elevated or how quickly they fall. If your symptom severity is high, then I'd recommend getting a culture. If that is positive and you had sudden onset OCD, then treat the strep! My dd is now on propholaxis antibiotics given the severity of her situation.

 

We had very good success on azithromycin after not clearing the strep on amoxicillin. I can post more about what we went through if it helps, but bottom line if you have doubts, get a culture and act on that.

 

Regards,

 

Buster

[Buster]

I remember someone posting (but can't remember who, sorry) a link that talked about titer testing and said that ASO and Anti-DNase B alone were not enough that there are more that should be tested for and that you can't rule out PANDAS without these.

 

Hi Dut,

 

Here was my prior post on ASO titers: A little bit about ASO titers

 

Regards,

 

Buster

[EAMom]

Hi Myrose,

 

Pandas in her case was ruled out by her neurologist becasue of the titer issue alone. She has a history of sore throats and tested positive for strep when she did not even have any symptoms of it.

 

Your neurologist was wrong wrong wrong. You cannot rule out PANDAS b/c of low titers.

 

Our (Buster is my dh) dd's titers were low ...ASO 31, antidnase B 149 (late March); ASO 28, antidnase B <60 (late April). In March her throat culture was positive (rare growth 72 hour culture); also positive skin (perianal). Her sister was also postive on the rapid (assymptomatic strep carrier). DD had full blown PANDAS symptoms when these low titers were drawn (anorexia nervosa, contamination fears, OCD, defiance, anxiety, tics, emotional lability, suicidal thoughts and statements, depression, tantrums, sensory defensiveness). This is from Buster's post "A Little Bit About ASO Titers"

 

One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type.

 

By the way, My rose, I'm not trying to diagnose your child...saying your child does (or does not) have PANDAS. But what I am just saying is that you can't rule out PANDAS based on just on low titers. If your child had postive throat cultures that is all you need to document evidence of strep...it wasn't even necessary to run the titers in the first place.

[myrose]

WOW! THANK YOU ALL FOR ALL THAT INFORMATION. I have just two more questions:

 

In pandas when you are not in an episode.....do the kids still tic all the time? Even when the other issues (ocd, ect) are calming back down?

or do they just tic more during an episode? I guess what I am wondering is hard for me to explain. My daughter ticced all the time and everyday no matter if the ocd was there or not. The ocd may have been mild and would seem to go away but the tics never did. She has never had a day without them. (That is before we started the topamax)

 

Secondly our neuro refused to try antibitoics because the of the titers not being elevated. His nurse practioner suggested I try to talk her pediatrician into it but I got a "no" there as well. Anyone know of any Doctors that would try and are educated in Pandas in the Orlando Florida area?

I already tried Tanya Murphy...can not get in. From what I hear she wants to medicate anyhow, but I could be wrong on this.

 

Thanks again everyone! I really do truly appreciate all your time and knowledge. Even though we are doing beautiful on the topamax I am still worried in the back of my mind that she was given the wrong diagnosis. (Tic- disorder) I just want to make sure she is getting the treatment she needs. Its scary now after reading about all the Pandas info.

[myrose]

No Pandas Docs in Orlando FLorida???

[bmom]

How about a phone consult with Dr. K? He can not prescribe anything out of state, but you could go over history and maybe get an idea of what your options are. Of course, people have mixed ideas on him and he has said that Tourettes is most likely untreated PANDAS. So, take it for what it is. I asked him once if there was any way to tell the difference. His response was if it was a sudden onset, it is most likely PANDAS.

[Chemar]

myrose

 

if your daughter is doing well on the topamax, why do you suspect there is PANDAS? presuming she isnt on an antibiotic is she? if not and no OCD, then imo highly unlikely she is PANDAS, but when history of strep always wise to check. was there any follow up on the suspected seizure activity?

Do you still see dr Franz?

I am not aware of any PANDAS specialists in Orlando but perhaps she may know

[myrose]

Chemar...Yes she is doing great. But in the beginning of it all and after learning about Pandas, I always wondered about her. Her EEG was supposed to be repeated this month but it got moved to September. But please keep in my mind the mild discharges had nothing to do with her tics. This showed in the 24 hour video EEG. No connection at all.

 

Anyhow something I read on the board recently really scared me. It was about the damage Pandas can do to the brain if not treated and the damage is not reversible.

I was and am just so confused about it though. My daughter always complained of sore throats constantly, tested postitve for strep when they finally agreed to check for me. They never would before because she had no symptoms and she would never allow them to stick the swab in her mouth.

The tic onset was sudden, then one day everything had to be perfect as far as her drawings. For example if she were to draw two circles and one of them was not EXACTLY like the first one she would loose all control. I thought it strange at the time but did not really think about it.

Then the handwashing came on out of the blue but went away. The constant urge to pee everynight was the worst I think.

 

I guess I just want to make sure she was properly diagnosed. I am scared that she may need antibiotics instead of topamax. I just want to know for sure but cannot figure it out nor decide what steps to take if any.

 

While being on Topamax it takes the tics away but it is also used for OCD so it could be taking that away as well. In other words I do not know what symptoms she would still have. I wonder if a Pandas child took topamax and would get the same result????

 

GOSH I am so CONFUSED and just worried again. Her neuro will not agree to try a round of antibiotics because of the titer issue alone. And yes she is still with Dr, Franz but she will also not try antibiotics because of the titers not being elevated. All I read now says they do not have to be elevated and everyone has a different baseline to begin with. But when I call the doctors with this news they think I am crazy.

 

I AM CONFUSED AND FRUSTRATED......any help would be appreciated as far as trying to figure out if I should be concerned about Pandas or not.

It also all started after the shots (tics anyhow) the ocd with the drawings started before that though while in pre-school (at least I think)

 

I guess Cheri that I just don't know what to believe anymore

[myrose]

BMom,

Thanks for the suggestion. When you say sudden onset is where I get confused. I mean anyone that started with tics and such had a sudden onset didn't they?

I mean they just woke up one day having tics right?? So isn't everyone that started having tics considered sudden onset???

I am confused...HELP!

 

 

also I was trying to explain to Cheri in my reply post to her that if the topamax takes away all my daughters symptoms with tics and Ocd then how would I know if they are stronger sometimes after illness or whenever??? Do you know what I mean...Please say YES LOL

[dut]

In response to the tic part of your question, one of the last symptoms to go with our dd was a sort of facial grimace and noise she did.. not totally convinced it was a tic but we think it probably was. Also PANDAS symptoms can go without antibiotics. Our doctor's last and only other PANDAS patient presented to her after the active part of the strep infection and so was never given antibiotics but symptoms faded over a 6 month period, I presume as the inflammation went away. Whether it came back or not, I dunno...

 

Buster-

 

thanks for your link re titers but I meant another post. I'm just not very good at being clear in posts :-) sorry.

 

I still can't remember who but they posted a link to a talk by a doctor who when doing blood tests does titers but looks at (I think)7- 9 different values, not just ASO and DNAase B. If memory serves me right, he said that this many was needed as different strains produce different proteins. I've probably got the explanation wrong but he said titers could still be elevated but drs not checking the right ones and that you can't rule out PANDAS or elevated titers with ASO and DNAase B alone. Hope someone remembers which dr it was and the link.

[dut]

oops sorry repeat post

[bmom]

Believe me, I do understand your dilema with this as I have been going back and forth with it for over a year. Hmm.. could you schedule and appointment with an ENT to look at her tonsils and see if they are enlarged and possibly harboring strep? Also, get another titer test and see if the titers have gone down from the time you tested her before? My son was a dramatic start although he had a few days of ticcing here and there in childhood (which by the way Dr. K says happens with quite a few Pandas children). Apparently some kids have a build up with tics, not my son. It came on and he was ticcing every few seconds and with many tics. That is dramatic. I guess what I have decided- I am going to investigate and go the distance with this PANDAS thing. I have his titers tested every other month-and they are going down even though always considered normal. Also, I am trying him on antibiotics - I have seen some improvement although not stopped completely, and I am probably going to have him do IVIG as his symptoms seem to get worse with each illness and I want to prevent that. So, what I am saying is I think it is important to rule out PANDAS. Maybe the ENT could culture her sample and see if strep grows. I would want to make sure the strep is gone if I were you just to be cautious. Hope this helps.

[bmom]

I thought of 2 other things: PANDAS children can have trouble with vaccinations (and I am not diagnosing your child (ha, ha) as do other children with tics. Also, could you do a titer test and then a round of antibiotics and then another titer test to see if they went down? In the beginning, my son was not on continual antibiotics and I would have his titers tested. Once in awhile, I could convince his pediatrician or DO to prescribe antibiotics and there would be a drop during that time (with Augmentin and Azith.) and then not a drop while off. This was a little experiment I did to determine if he was PANDAS. I just thought it was important to convince myself which route to go with him.