ADULT based PANDAS Tourettes? & Tics diminish with antibiotics?

[Chemar]

I wonder if there is anything to be learned by differentiating those who tic more when viral and those who tic less. My son was "inspired to tic" by a vaccine. After the initial explosion, he now only has mild tics when becoming ill.

 

I have read many others say that tics stop in their tracks when ill. I guess it could still be immune modulated, but we could at least observe under-responsive systems vs. over-responsive systems.

 

Guy, have you noticed any reaction to colds or flu? More or less?

 

 

 

very good point Tami

 

my son has always ticced way more when he is ill and especially if he has fever.

Interestingly tho, he hardly ever has illness like colds etc these days, which we have mainly attributed to his excellent supplement and diet, and as chemical free a life as possible.....

[guy123]

I wonder if there is anything to be learned by differentiating those who tic more when viral and those who tic less. My son was "inspired to tic" by a vaccine. After the initial explosion, he now only has mild tics when becoming ill.

 

I have read many others say that tics stop in their tracks when ill. I guess it could still be immune modulated, but we could at least observe under-responsive systems vs. over-responsive systems.

 

Guy, have you noticed any reaction to colds or flu? More or less?

 

You know, I haven't really noticed any change.

 

The one time I was aware of it was when I got a horrible stomach flu and ended up in the hospital. My tic was diminished initially, but I think it's because my body was in complete shock (I lost 14 pounds in 2 days and was in so much pain I could barely breathe). But the next day when I was laying in the hospital bed, I noticed I was blinking.

 

I haven't noticed any reduction or increase when I get a cold or whatever.

[Gravesland]

Hey all. Been about a year since this discussion seems to have ended, but thought I would post anyway.

 

I have Tourettes, my son has Tourettes. I'm getting more and more convinced that it was PANDAS created. Lot's of strep in our childhoods.

 

Any new news?

[britneymag]

Hummm very interesting. My daughter was diagnosed with tourette's and I have always had an issue with tics also. Mine is not as bad now but whenever she is have a rough time I start to tic more. I have always thought maybe it was stress but maybe if she is being exposed to strep and that is causing her to tic who's to say that I am not being exposed and also ticcing because of that. I know now that I had pandas symptoms as a child so maybe I still have it.

 

Melanie

 

Hey all. Been about a year since this discussion seems to have ended, but thought I would post anyway.

 

I have Tourettes, my son has Tourettes. I'm getting more and more convinced that it was PANDAS created. Lot's of strep in our childhoods.

 

Any new news?

[EAMom]

Hey all. Been about a year since this discussion seems to have ended, but thought I would post anyway.

 

I have Tourettes, my son has Tourettes. I'm getting more and more convinced that it was PANDAS created. Lot's of strep in our childhoods.

 

Any new news?

 

Where do you live? Maybe someone can rec a doc.

 

It would be great if you/your child could try a month or two of full-strength abs (azith or augmentin work for many people) to see if there is any response.

 

Does your child have other pandas symptoms? OCD, tantrums, anxiety, urinary issues, adhd...

 

Read throught the FAQ post by Buster...that is a good place to start on "new news". http://www.latitudes.org/forums/index.php?showtopic=6142

[MomWithOCDSon]

This is my first time on the forum, and I'm thrilled by all the discussion . . . several heads are better than one!

 

My son was diagnosed with OCD more than 6 years ago; through some web research, I'd come across PANDAS and asked both the doctor about it. He dismissed it quickly, saying that the research (at least at that time) was not conclusive; when we added a psychiatrist to the mix a couple of years later, he, too, dismissed it. Said he'd actually had a conversation with Swedlow (the NIMH doctor who'd led the pre-eminent PANDAS study) and she'd basically said that strep tests should not be standard protocol for children presenting with OCD.

 

So we went 6 years treating the OCD the standard way: therapy and SSRI's. But at 12, the behaviors went off the charts, and he didn't respond to anything. I found Beth Maloney's book "Saving Sammy" and decided, again, to press the PANDAS issue with our doctors. They finally relented, I think more to shut me up than because they believe it to be real. So, we've been off and on antibiotics for the last several months; every time we go on, we get positive results. Every time we come off, the behaviors start up again, so we go back on. Before we started the first course of antibiotics, we had his ASO strep titers tested, and the count was 438, nearly double the normal range.

 

So, while my son is not an adult, he's not exhibiting OCD for the first time, and he's still responding to antibiotics. My husband also suffers from anxiety and OCD, and he had multiple strep infections as a kid. We've talked about having his titers tested to see if they are elevated, but haven't taken that step yet as both his anxiety and OCD are more manageable on a daily basis than are my son's.

 

I would be REALLY interested to hear about adults who a) get titer tests and find they have elevated levels despite no recent strep infection, and those who, even as adults, start antibiotic treatment and receive some relief. That would blow much of the existing PANDAS criteria away, especially with respect to its treatment.

[MichaelTampa]

I am age 42, just got results from the Cunningham study, CamK was 186 (in PANDAS range), the anti-neuronal antibody titers were all very normal range (are those the titers you were asking about?). We'll see how treatment goes, not that far yet. Not surprised the titers were not elevated--I hadn't had a recent infection at all like strep. I did have plenty of wireless EMF exposure that had been seriously messing with my brain and had a couple weeks before (when the wireless was introduced) led to a real explosion of candida. I believe I've had the PANDAS since childhood. As we get a few more adult cases discussed here, maybe we'll figure something out.

[faith]

Micheal and momwithocdson,

have you all ever had antibiotics for anything as an adult recently and noted that your symptoms, however mild, were diminished? I have mentioned I have minor tics (of tapping and head tightening, nothing that would be noticed by others, but I know the feeling is there, altho not all the time), and I had recently gone on antibiotics (10 days of omniceph) for just a sore throat (not strep, it was negative, I asked to be tested just to make sure) and I noted that these urges to tic did NOT diminish or disappear. I don't suspect PANDAS for myself, just adding to the discussion my experience.

 

 

Faith

[bronxmom2]

I have experienced an alleviation of psychological symptoms with antibiotics many many times.

[MomWithOCDSon]

Micheal and momwithocdson,

have you all ever had antibiotics for anything as an adult recently and noted that your symptoms, however mild, were diminished? I have mentioned I have minor tics (of tapping and head tightening, nothing that would be noticed by others, but I know the feeling is there, altho not all the time), and I had recently gone on antibiotics (10 days of omniceph) for just a sore throat (not strep, it was negative, I asked to be tested just to make sure) and I noted that these urges to tic did NOT diminish or disappear. I don't suspect PANDAS for myself, just adding to the discussion my experience.

 

 

Faith

 

 

I don't believe I have clinically significant OCD myself (coworkers and family may disagree with that ), but I HAVE noticed for myself that my anxiety seems to diminish overall once I've secured antibiotics for a case of strep. When I get strep throat, I get a really bad case, and it escalates very quickly; now I can see it coming from a mile away. But I honestly never connected my fresh ease with the drugs; I just thought I felt tremendous relief at getting treatment and starting to feel better!

 

As for my husband, I suspect his anxiety may, in fact, be a long-undiagnosed PANDAS situation, based primarily upon the things he's told me about his childhood and how his anxiety/OCD grew in leaps and bounds at a certain point in his life when his family had relocated and he and his brothers kept sharing a case a strep throat for an extended period. He was on antibiotics for a sinus infection just a few weeks ago, and I do believe it had a minor impact on his OCD as well (he just seemed less pent up about things), but it was only a 10-day course, and his OCD isn't at a level where it significantly interferes with his life, so I'm not sure we would treat it pharmacologically anyway, though he does take an SSRI for his generalized anxiety disorder. Would antibiotics help that?! At his age?!

 

Yes, the more adults who chime in on this, the better! Maybe it's not just PANDAS; maybe it's ANDAS!

[faith]

Yes, the more adults who chime in on this, the better! Maybe it's not just PANDAS; maybe it's ANDAS!

 

... at least you didn't say GANDAS, (geriatric).......

 

but as you say, some adults do not really have significant enough symptoms to warrant treatment, I know I wouldn't bother with it for fear of making things more comlicated, as adults we will start to have other health issues added to the mix and some may take meds for that, so I wouldn't want to start mixing and adding to all that. ... AND there is also the premise that these issues of tics, ocd or other symptoms, weither it be PANDAS (autoimune related) or not, usually trend downward after puberty and sometimes totally resolve. altho I can see where 'minor residual' behaviors could be left. So this is a little hard to gauge (the adult version) since symptoms drop off in severity in adulthood. But I would still be interested to see what happens in those with suspected symptoms that have gone on from childhood into adulthood.

 

Also, momtoocdson, I find it somewhat interesting that your boy has high ASO titers (have you also had the Dnase? as they are significant too, maybe moreso), and you say he's had no known infection. But I just want to correct you that these titers don't indicate a 'lingering infection', but seems to indicate there has been one 'in the past'. altho I guess lingering might be a possibility as well, don't know, we are all kind of guessing on this one.

When Swedo says that titers are not that indicative of PANDAS, it means that if titers are 'low', it may not mean anything significant, for it could still be PANDAS, but I think if there ARE high titers, that kind of says something, I think. I believe that 'Sammy' had the high titers, perhaps that is why he responded to the antibiotics?

 

Faith

[MichaelTampa]

I think as an adult I was on antibiotics once and NSAID once. It's not a lot of experience, but I do have a memory of taking one of these and thinking how it did make me feel overall better (probably means calmer), even though it was totally for something else. Best guess is that was NSAID's for foot pain considered at the time related to exercising, but never resolved.

 

Interesting, just looking through Sydenham Chorea symptoms more, as my CamK number came in high end of PANDAS, just below low end of SC, and I find "joint discomfort (arthralgia) in the absence of redness, warmth, or pain upon physical examination", and perhaps the best story for my foot pain, which has been looked at so many ways by so many doctors, without any diagnosis or resolution. I also found nose bleeds (lots as a kid, some as an adult, but, also, generally bleed easily), light sensitivity, and could look at all the foot and hand tapping to music playing internally in my head as similar to the "milking" (in the left-right-left-right aspect) and "keyboard playing". Really just minor symptoms compared to whole long list for SC, but interesting to find some potentially in the SC category as well.

 

On a related line of questioning, I would put myself in the category of someone whose psychiatric symptoms (OCD and so on) decrease during illness, such as cold/flu/etc., even without medicine, to the point where attributing it to "having less overall energy" seems unlikely.

 

Michael

[MomWithOCDSon]

Hi Faith!

 

Long story short . . . after reading "Saving Sammy," I contacted Beth Maloney and she gave me the name of the two blood tests I wanted to have run: the ASO titers and the DNase test (I'd never even heard of the CAM or CamK stuff until I logged into this forum). At that time, we had our son in an outpatient program at a local hospital, trying to manage his anxiety and OCD because he couldn't function in his regular school. I talked with the psychiatrist at the program and insisted on the blood tests; in the end, though, she only ordered the ASO titers one, and when the results came back from that at signficantly elevated levels, it was enough "evidence" for me to take to his pediatrician and get a prescription for antibiotics.

 

I see a lot of similarities between Sammy and my son, which is one reason I've become so emotionally invested in trying a similar treatment protocol. My son, like Sammy, was a high-functioning math whiz one week, and a total meltdown mess the next. Like Sammy, he's NEVER actually had a strep infection that we know of ("asymptomatic"), but he nonetheless had this extremely high count of strep antibodies, which would seem to indicate either he had one in his body somewhere, somehow, or, as you've suggested, had one or more in the past and the antibodies were still active.

 

This stuff is so complicated!

[Cristo]

When my son gets a low grade fever, gets run down from staying up late or from getting up too early for hockey practice, he gets run down, and then gets sick. As long as azithromycin is given right away...he doesn't spiral down the crazy tic path. He says that he feel them coming on, and I notice them starting. So, I really try to jump on it right away.

 

There must be some kind of connection between infection in general, tics, and antibiotics making them go away. Maybe that it pitand? Maybe my son had pandas and pitand at the same time last year, and now is totally susceptible to having it come on strong again. I don't know. He has a tic disorder that seems to come on strong with an infection/fever, and then goes away with azithromycin. Interesting.

[Cristo]

Just some info. to add to the pot. My husband has mild tics. When my son had a dramatic onset, I somewhat ruled out PANDAS for whatever reason because of my husbands situation and because we had seen a few minor tics in my son before. Anyway, I spent about a year trying to nail down if my son had PANDAS or Tourettes. I have had his titers tested many times always in the normal range. We check every month or so and they are going down from his second episode of what I believe to now be PANDAS. They were normal, yet declining anyway. So perhaps what Buster explained fit my son. He responded to antibiotics at first. His pediatrician would only prescribe a 10 day dose here and there and he always seemed better. Well when we finally found a doc. to prescribe propholactly, they aren't working as well. (6 months after episode). Although they seem to reduce quite a bit, the symptoms still wax and wane following even a small cold. We had our second phone consult with doctor K and I posed the question as to whether my husband was PANDAS as an adult. He said did he have fears? We think so although his mom has passed away. He is claustorphobic now so yes, probably. That is a good indication. We have decided we will probably go with IVIG and I asked Dr. K "What if it is Tourettes and not PANDAS?" He said he is not so sure they are separate things. So, maybe we have different triggers (some shots, some illness like strep throat), but perhaps it is not completely separate?

 

Does that mean that taking antibiotics here and there when they have fever is not a good idea? Is it better to do it prophelactically throughout? Not many people will prescibe it prophelactically.