PANDAS in adults

[MichaelTampa]

I am an adult (age 42), diagnosed with Tourette's. As I continue to look for solutions, I want to consider PANDAS as a possibility for the cause. Dr. Cunningham says she will include me in the study, but points out that so far the study has just been children. I thought I ran across something on this forum yesterday talking about the relevance of getting treatment for PANDAS, it is never too late, as long it gets done before puberty, or something like that. Does anyone understand what is expected to happen to a child with PANDAS as they go through puberty and eventually become an adult? I know the P in PANDAS stands for pediatric, but still, people do get older, and yet I'm feeling I'm missing some obvious point. Can anyone help me, tell me what I'm not understanding?

 

Michael

[peglem]

I am an adult (age 42), diagnosed with Tourette's. As I continue to look for solutions, I want to consider PANDAS as a possibility for the cause. Dr. Cunningham says she will include me in the study, but points out that so far the study has just been children. I thought I ran across something on this forum yesterday talking about the relevance of getting treatment for PANDAS, it is never too late, as long it gets done before puberty, or something like that. Does anyone understand what is expected to happen to a child with PANDAS as they go through puberty and eventually become an adult? I know the P in PANDAS stands for pediatric, but still, people do get older, and yet I'm feeling I'm missing some obvious point. Can anyone help me, tell me what I'm not understanding?

 

Michael

Here is a case study from Turkey, involving 4 adults whose PANDAS began in childhood. They responded to treatment.

http://www.turkpsikiyatri.com/en/default.a...icle&id=592

 

I don't think anybody really knows much about the effects of treatment on PANDAS adults...there just haven't been many studies done.

[dcmom]

Michael- In my opinion, the P for pediatric, in Pandas, is an artificially imposed requirement put on the disorder by researching doctors in order to make it possible for them to develop a study around it. Some parents, doctors, like to think this will end at puberty. It may be the case for some, but not all (my neurologist has a 21 yr old that he has treated since she was young- still has pandas). Unfortunately, no one really knows enough about this disorder to tell you anything concrete- and if they say they do- look for another doc. There is a study that follows 4 young men who had pex treatment- I think it is European? Someone on the forum has it and will hopefully attach it to this thread.

 

If you feel your Tourettes may be linked to pandas, there is certainly no reason not to pursue that path. You will need to find an open minded doc to help you. would you consider high dose Augmentin for at least 60 days along with a steroid burst? Many/most seem to find some type of relief (if sometimes short lived) from this. You could also consider having your immune system tested...

 

Good luck....

[thereishope]

If you have Tourette's, I think I remember Chemar saying that steroids will worsen your Tourettes. That happened with her husband. Something to keep in the back of of your mind while making that decision. Have your ever taken a steroid before for something like poison ivy?

 

Have you ever noticed a time when your Tourettes seemed to improve? Like while on antibiotics or anything else you could correlate improvement with?

 

Some children also find some relief with Ibruprofen.

[MichaelTampa]

Thanks everybody!

 

I think I was on steriods once briefly (non-something something steriod), or maybe it was non-steriodal something-something, it was something that had a very long description. I was also on antibiotics once or twice. All of this was years ago and unfortunately I don't remember other details like if TS symptoms got better or worse.

 

Michael

[thereishope]

Maybe you're thinking of NSAID. Non Steroidal Anti Inflammatory Drug aka Ibruprofen. Sometimes docs will give a script for a higher dosage so you don't have to take so many pills. Like a 600 mg tablet whereas a normal over the counter is 200 mg.

[Chemar]

If you feel your Tourettes may be linked to pandas, there is certainly no reason not to pursue that path. You will need to find an open minded doc to help you. would you consider high dose Augmentin for at least 60 days along with a steroid burst? Many/most seem to find some type of relief (if sometimes short lived) from this. You could also consider having your immune system tested...

 

Good luck....

 

Michael

PLEASE Please Please be very careful before considering a steroid burst if you have Tourette Syndrome (even if you also may have PANDAS)

 

steroids can trigger tics in people with TS

 

my husband is in his 60s and his tics were almost non existent for many years now

 

he suffered herniated discs in his spine over a year ago ago and despite my warnings, agreed to a prednisone burst recommended for the inflammation by his orthopedic doctor. I tried in vain to warn both of them of what I had heard related to steroids and tics. They felt I was being overly dramatic

 

my husband had horrendous side effects from the prednisone and in addition to cognitive impairment, it also triggered a massive spike in his tics, which are still intense after over a year

 

I know the steroid burst is very beneficial for inflammation and yes, has helped many people with PANDAS

BUT

if you have TS as well

*please* proceed with great caution on this!

[MichaelTampa]

Vickie--Yes, you nailed it, NSAID is exactly what it was.

 

Cheri--I appreciate the heads up on steriods. My goodness, a year later! I'll proceed with caution and probably ask you more questions if the test indicates PANDAS. I really am guessing it will not, and I was more looking for a rule-out if you will.

 

On a somehow related and somehow not-so-related topic, who knows what I really have or if I have TS. The diagnosis of TS I got last year has been enormously helpful in steering me in the right direction, and I am at least convinced there are neurological issues. But, the MD/psychiatrist I went to last night (who gave me prozac last year that more or less immediately caused a 4-month disability) in hopes of a letter to help with my ADA claim to get perfumes out of the restroom at work said she would look for a way to support that claim, but she totally did not see TS in me, not even a little bit. So today I directly asked my PhD psychologist what she thought, and she also does not agree with the TS diagnosis (she sees anxiety), not that she cares much one way or another, she just does what she can to help what she can, and admits she's not a TS expert. But, the TS versus anxiety difference is, I believe, huge, because emotional disorders are not going to be covered by ADA (which I have always thought just unfair, but that's the way things are now). My psychologist had not heard of "Tourettic OCD", but thought it made a lot of sense, but still would consider that an adjective, something you can have without TS. You have mentioned papers before about Tourettic OCD. What are your thoughts on Tourettic OCD, can it exist without TS? Also, not sure how much you have remembered my situation, but the reality is, I am a little bit out of place in the TS forum with so many symptoms being emotional and sensory sensitivity (fluorescent lights and perfumes and cell phones and so on), with just some spasms here and there and eye-blinking in the pure motor tic category. Meanwhile, last night the MD/psychiatrist points out the guy that diagnosed me has had 5 other patients he diagnosed as TS that she has seen and not believed the TS. That's going to sound to everyone like he overdoes it, but the other possibility is that she doesn't understand the TS very well. Perhaps a blood test showing PANDAS would be evidence of PANDAS instead of TS, rather than in addition to it, but who is to say really? I would think my experience with the dental device helping with emotions so much would clearly indicate a neurological issue, but I think that's as far as I'd go with that one.

[thereishope]

Tourettic OCD w/o TS? Can you explain that more. I find it interesting. My son went to a psychologist at one point. First, let me say he has no tics. However, she found his residual OCD very interesting. Some parts of his OCD looked like regular OCD, some parts of it she said looked like the OCD associated with TS. Either way, it's all gone now.

[MichaelTampa]

Vickie,

 

You could look it as uncontrolled thoughts and emotions just popping up, unrelated to what is going on in the person's experience. Perhaps it is a lot of uncontrolled thoughts that lead to emotions. Focusing over and over that someone did something last week that you really didn't like, and that may cause anger or depression or sadness or worry or whatever. Regardless, the experience ends up being one where thoughts and emotions are very out of control, and moodswings can be quick sometimes, and the person can be very stuck in a negative mood for a long time as the one thought/emotion is just repeating over and over. The person would likely be very irritable, anxious, nervous, short-tempered, edgy, depressed, short-tempered, easily flustered, and so on (stealing some of these words from Cheri from a different thread).

 

That basically was my experience for many years, before I got a dental device similar to what dentists would use to treat TMJ. It realigns the jaw. I also had very severe sensory sensitivities--fluorescent lights, perfumes and other smells, and cellphones top of the list. All of these are on the common TS tic trigger list, and perhaps that is not a coincidence. Yes, and some occasional eye-blinking episodes typical of TS and miscellaneous muscle spasms (which would qualify as uncontrolled movements perhaps, but not quite the typical motor tics), and a few other things, like uncontrolled change in accent (mid-sentence, I start talking like I'm from New England or India) that I have heard categorized as a vocal tic.

 

The dental device cuts down lots and lots on what is described above in the first paragraph. But, when I am exposed to the sensory sensitivities, all that comes back, along with nightmares, very loose and urgent stools and other digestive issues.

 

So, you can look at this in a few ways. You can see the motor/vocal tics as limited but real, and say I have TS where the uncontrolled emotions and thoughts happen to be more of an issue than the motor/vocal tics (and perhaps for others it is reversed). Or, you can look at it as "Tourettic OCD" perhaps, or as a straight emotional disorder like anxiety with perhaps some multiple chemical sensitivity mixed in.

 

Michael

[thereishope]

That sounds exactly like someone's child's experience on here. Thanks for sharing this. Now if I only could remember whose child this is....

 

 

Vickie,

 

You could look it as uncontrolled thoughts and emotions just popping up, unrelated to what is going on in the person's experience. Perhaps it is a lot of uncontrolled thoughts that lead to emotions. Focusing over and over that someone did something last week that you really didn't like, and that may cause anger or depression or sadness or worry or whatever. Regardless, the experience ends up being one where thoughts and emotions are very out of control, and moodswings can be quick sometimes, and the person can be very stuck in a negative mood for a long time as the one thought/emotion is just repeating over and over. The person would likely be very irritable, anxious, nervous, short-tempered, edgy, depressed, short-tempered, easily flustered, and so on (stealing some of these words from Cheri from a different thread).

 

 

Michael

[thereishope]

Michael, here's a link to a thread I foudn that was started about 2 years ago.Thought you might like to read it.

 

http://www.latitudes.org/forums/index.php?...18400entry18400

[Chemar]

What are your thoughts on Tourettic OCD, can it exist without TS? Also, not sure how much you have remembered my situation, but the reality is, I am a little bit out of place in the TS forum with so many symptoms being emotional and sensory sensitivity (fluorescent lights and perfumes and cell phones and so on), with just some spasms here and there and eye-blinking in the pure motor tic category.

 

Hi Michael

 

Tourettic OCD is the form of OCD that occurs co-morbid in Tourette Syndrome so no, I dont believe one can have tourettic OCD without having TS

 

another subtype of OCD? possibly yes!

 

the emotional and sensory sensitivity are also frequently co-morbid with TS, altho the primary characteristic of TS is motor and vocal tics that characteristically wax and wane. many people with TS only have tics, no other comorbid disorders.

Some people may possibly carry the TS gene but not manifest the tics, ie only exhibit the OCD etc.

 

 

something else to consider, *if* you do respond well to antibiotics yet have no evidence of strep antibodies then it may be that a different microbe may be triggering your symptoms. I know of people who have been misdx with TS when they in fact had lyme disease. Some people have reported their tics/OCD etc totally subsided after treatment for candida, epstein barr, herpes etc etc....so it isnt just strep bacteria that can cause tics or even OCD/emotional volatility.....other microbes can as well. I dont know if the term is still being used, but in kids who did not manifest strep profiles, this used to be called PITANDS