PANDAS or regular Tourette?

[kg5123]

I am a father of a 15-year old suspected PANDAS kid, Kohei. I would appreciate if someone would provide me with some clue that can help me answer my long-standing question of whether he is really PANDAS or regular TS.

 

Kohei has been with tics since the age of 3. His tics started a few months after consecutive rounds of high-fever episodes following strep infections at the end of around 3. These episodes have become a primary reason why we came to suspect that Kohei is PANDAS. Those days, our family lived in a city near Tokyo and no doctors in Japan were familiar with the concept of PANDAS, about which we also had no knowledge at all back in 1997. His tics went away about six months later. Then seven years had passed without any tics. During this period, we almost forgot about tics or TS. It was in the spring of 2005 that Kohei resumed tic activity. Initially, tics were mild and over the course of the following half year, the severity increased gradually and by January of 2006, his tics became rampant and spiraled out of control. Then, he was totally incapacitated and home bound -- shouting, howling, crying, uttering dirty words, body shaking and moving violently, forcing him to get hospitalized for three months in Tokyo.

 

We remembered that his tic activity accelerated in intensity each time he had infection or infection-related incidents, including influenza shots, mumps, strep infections and exposure to China's notorious Yellow Sand air. By June 2006, his tics weakened. But strong separation anxiety remained in the following one year and half, during which tics were very mild or none. Japanese doctors laughed about any PANDAS things with most of them having no knowledge about PANDAS. They confidently said Kohei was just regular TS. But the parents were convinced that the regular TS theory could not explain Kohei's tic activity triggered by infection activity.

 

His tics again resumed in August of 2007 and continued over the following one year and half until March this year. Between March this year and mid-August -- only two week ago -- he was completely free from tics. He has been on IVIG every month since January this year. But recently, he again contracted tic symptoms with its severity accelerating in the past few days. So, we are very scared. By the way, our family moved to CT, USA in April 2008.

 

Given conditions and history mentioned above, we suspect Kohey has probably PANDAS. American doctors who saw him are mixed with some of them declaring he is PANDAS but others doubtful. PANDAS textbooks say symptoms' onset should be drastic. But in the case of Kohei, tic symptoms have not bee so dramatic or drastic. But they grew stronger gradually over the course of time passage. This is a point that may provide reasons to deny PANDAS. I would like to hear views and opnions on this point from Forum readers.

 

Also, my long-standing question is that why there was a seven-year complete tic-free period between the age of 4 and age of 11. This has been a mystery for me. Why Kohei did not contract any problem during so long time? I hope to get comments on this point too. Thank you very much.

[lss]

KG

 

I don't think tourettes would go away for that long of a period, but you may want to ask Dr. Jim Leckman at Yale, he will respond if you email him James.Leckman@yale.edu

 

Since you are in Ct. I would call Dr. Latimer in DC and have a phone consult with her. I know of another parent here who drove to see her from Ct. and had Plasmapheresis done at Georgetown.

 

Linda

[EAMom]

Welcome...has your son had a throat culture since the tics have come back? Is he on prophylactic antibiotics? Which antibiotic and how much? Any other meds?

 

I don't think regular tourettes would have responded to IVIG...and it sounds like it helped your son, at least for a while. I wonder if there is something going on that has re-ignited the pandas (eg. strep infection--hence the recommendation for a throat culture, or some other infection).

 

Did he ever have any episodes of urinary frequency? That is common in PANDAS kids (58%) but rare in regular tourettes.

 

Has your son hit puberty yet (I assume so at 15?). Did that correlate with any changes?

 

American doctors who saw him are mixed with some of them declaring he is PANDAS but others doubtful. PANDAS textbooks say symptoms' onset should be drastic. But in the case of Kohei, tic symptoms have not bee so dramatic or drastic.

I don't think it is always dramatic or drastic. A lot of times symptoms are low grade but then suddenly get worse. Or they can just build over time. I think the cases Sue Swedo described, fit the dramatic onset, and these cases are more easily identified as PANDAS.

 

Which doctors have you been working with? Dr. Leckman at Yale (Yale Child Study Center) might be close to you if you live in CT?

 

It could be your son was okay between 4-11 b/c he was on a course of antibiotics (or steroids, or just time) which may have put him temporarily into remission (he was just lucky)...and didn't encounter the "right" strain of strep to re-ignite the pandas. There are some kids that don't get obvious PANDAS symptoms until they are 10-11. You just had early clues because your son was unlucky enough to get a bunch of strep infections when he was 3-4.

[kg5123]

My PANDAS kid Kohei has been working with Dr. Leckman of Yale University. He is really reliable, knowledeable and compasionate toward patients. And he has a deep insight into the core of patients' problems.

 

 

Kohei has been on IVIG every four weeks since January. The reason he started IVIG is his low IGG, which a local immune doctor suspects has weakened Kohei's immune defense system against infection. Because of IVIG, his IGG has been back to normal levels.

 

Kohei's current medications are: tetrabenazine 50mg per day

zoloft 75 mg per day

penicillin (amaxicillin) 250mg x 2 perday

singulair 10mg per day

beta-blocker 80 mg x 2 per day

vitamin D 1.25 mg per month

 

His ASO reasings in the past year were around 300.

 

Beta-blocker is to adjust his thyroid function. Kohei periodically contracts thyroditis. Each time his thyroid function develops a problem, he tends to feel fatigue, irritation, hotness and easily out of breath, sparking tic deterioration.

 

The latest tic resumption followed active summer-vacation activity, especially swimming twice in a local beach and swimming in an indoor pool in a Holiday Inn hotel during vacation. I regret we should have kept him away from places that may pose risks of infection.

 

 

KG

[thereishope]

Few things....As many will tell you, the chlorine in swimming pools will worsen many kids' tics. As for that long span of time in which he was "tic free", a couple questions would be if he had any major illness that you could recall during that time? I would be curious to know if he specifically had strep in that time frame. There's a chance if he was healthy, the tics would go away with time as the brain had a chance to heal. Some PANDAS children go completely into remission w/ just antibiotics.

 

A great thing in this website is if you look on the bottom, there is a keyword section. You can look up old theads. Example...if you type in chlorine, threads about that will pop up. You can have a field day typing in all the symptoms that pertain to you.

[kg5123]

Thanks Vickie

 

My suspected PANDAS kid Kohei had no major illness during the seven-year tic-free period. Therefore, he had no chance to measure his strep infection.

 

KG

[KeithandElizabeth]

Hello:

 

I would also suggest having your son take Dr. Madeleine Cunningham blood tests mentioned on this website.

 

elizabeth

[dcmom]

Vickie- do you think the chlorine could apply to the ocd as well. (Our lovely city water is treated with chloramine- so dd bathes in it all the time...)

[michele]

My son Andrew has a long history of tics that date back to infancy and his was brought on with strep. However, he was never tic free for as long as you were, maybe six months to a year he was tic free in the beginning. His would return with ear infections, virals with fevers, immunizations and stressful situations. The moods and fears and tantrums started at age 3-4. After shots urinary frequency and compulsions. Dr's always said he was TS with ADHD. Then they added the Aspergers this year. I have always thought it was PANDAS. Dr. Murphy said it seemed like PANDAS. We did see Dr. latimer in July and she was confused between compulsions and tics and PANDAS. The cunninghams tests were also borderline PANDAS but Latimer said they can also be read as borderline normal for tics and OCD. So long story short we are still confused. I thought she'd be able to help bu after a monh steroid burst I really only saw him acting worse. I am guessing they are all on the same spectrum PANDAS and tourettes but some kids are worse after illness. Meds don't really work that well and he does wax and wane but is never a year free from tics both verbal and motor. Does your son do the tics and compulsions for more then a year? My sons change but seem to never truly leave. We just treat it as you would the seperate disorders, Abilify for the moods, clonidine for the tics, and celexa for the obsessions. The meds don't make it ever completely go away.

 

Hello:

 

I would also suggest having your son take Dr. Madeleine Cunningham blood tests mentioned on this website.

 

elizabeth

[thereishope]

I would think if it affects tics, it could affect OCD as well. I'm in some OCD groups that I can ask that question to.

 

Here is the website I got some info from on chloramine. It does suggest using cold water when you bathe and closing the bathroom door so the pollutents don't go throughout the house.

http://www.chloramine.org/chloraminefacts.htm

 

I did also just stumble on a filter that uses VitaminC to filter out chlorine and chloramine.This site also sells tablets you can put in your water. Here's that link...

http://renewalenterprises.com/shfi.html

 

 

 

 

Vickie- do you think the chlorine could apply to the ocd as well. (Our lovely city water is treated with chloramine- so dd bathes in it all the time...)

[kg5123]

Again agout chlorine effects.

If my suspected PANDAS kid's tic activity revived after a five-month complete tic-free period because of the single factor of exposure to chlorine used in an indoor poor the son bathed during the summer vacation, how long that effects should continue? The son's tic condition has been worsening in an accelerated manner, especially in the past three days -- two weeks after the onset of the initial symptoms. How long we would have to wait for the symptoms to fade? May we understand that seemingly positve effects of IVIG the son has been on every four weeks have been overwhelmed by the magnitude of bad effects caused by the single factor of chlorine?

 

 

Lookng for helpful comments on this. Thank you.

KG

[EAMom]

Personally, in case the chlorine is a red herring...I still would switch to Azithromycin (from Amoxicillin) and also add on some advil.

[lss]

Alot of others on the Tourettes panel here have also posted that their children's tics get worse after swimming, and they attribute it to the chlorine in the pools, my son included, but now I'm wondering if it could be because of things such as cryptosporidium or other contaminates in the pool water. My son like alot of others here react to bacterial as well as viral infections, so you never know.

 

Over the summer we were at a few water parks, one being Six Flags water park and after the first day my son's tics and behavior were horrible! Prior to that trip, our neighbors had taken him to a local water park, and his tics were fine, so I honestly don't think its the chlorine.

 

http://truehealthistruewealth.blogspot.com...n-catch-in.html

 

Linda

 

 

Again agout chlorine effects.

If my suspected PANDAS kid's tic activity revived after a five-month complete tic-free period because of the single factor of exposure to chlorine used in an indoor poor the son bathed during the summer vacation, how long that effects should continue? The son's tic condition has been worsening in an accelerated manner, especially in the past three days -- two weeks after the onset of the initial symptoms. How long we would have to wait for the symptoms to fade? May we understand that seemingly positve effects of IVIG the son has been on every four weeks have been overwhelmed by the magnitude of bad effects caused by the single factor of chlorine?

 

 

Lookng for helpful comments on this. Thank you.

KG

[thereishope]

I don't think the chlorine would null and void IVIG. Nor do I think that it would continue to worsen and worsen weeks after swimming. I was trying to say that many have seen a cause and effect factor w/ chlorine and it may be something to avoid or take precaution. I believe some rub magnesium on their children, shower immediately after, etc. I do not know how long the ill effects of chlorine might last.

 

You said that his tics resurfaced a couple weeks ago, even with IVIG. What tests has his doctors done to rule out an existing infection? Like another said, it may be time to tell/ask the doctors to switch antibiotics to something stronger.

 

 

 

 

 

Again agout chlorine effects.

If my suspected PANDAS kid's tic activity revived after a five-month complete tic-free period because of the single factor of exposure to chlorine used in an indoor poor the son bathed during the summer vacation, how long that effects should continue? The son's tic condition has been worsening in an accelerated manner, especially in the past three days -- two weeks after the onset of the initial symptoms. How long we would have to wait for the symptoms to fade? May we understand that seemingly positve effects of IVIG the son has been on every four weeks have been overwhelmed by the magnitude of bad effects caused by the single factor of chlorine?

 

 

Lookng for helpful comments on this. Thank you.

KG