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Hello,

I am becoming more and more convinced since reading posts in the forum that my 9 year old was misdiagnosed with TS, instead of PANDAS. I have always been uncomfortable with the ts diagnosis and reading some of the posts about pandas is like reading our own story! I have several questions, first of which is: When a pandas child's symptoms are in "remission", do they completely disappear, or are they just at a reduced level? Also, my son has severe vocal tics (coprolalia) and some motor tics but very mild ocd, is this unusual in pandas? It seems that many people experience the opposite - severe ocd and mild tics.

 

Any information would be very helpful. I am just now learning about pandas and want to be sure my son fits the PANDAS diagnosis before I approach our doctors with the possibility.

Thanks! Sarah

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Hello,

I am becoming more and more convinced since reading posts in the forum that my 9 year old was misdiagnosed with TS, instead of PANDAS. I have always been uncomfortable with the ts diagnosis and reading some of the posts about pandas is like reading our own story! I have several questions, first of which is: When a pandas child's symptoms are in "remission", do they completely disappear, or are they just at a reduced level? Also, my son has severe vocal tics (coprolalia) and some motor tics but very mild ocd, is this unusual in pandas? It seems that many people experience the opposite - severe ocd and mild tics.

 

Any information would be very helpful. I am just now learning about pandas and want to be sure my son fits the PANDAS diagnosis before I approach our doctors with the possibility.

Thanks! Sarah

 

My boys present with tics..no ocd.

JMHO i think tics are under reported...as they "may not interfere as much" (to some) as ocd..and docs, pediatricians are quicker to dismiss tics as transient or ts.

 

my childs used to completely disappear, for ds 10 we are almost 2 years into this onset and looking at lymes..

it does wax and wane per new infections and exposures including allergies.

ds 8 new to pandas as per 5 weeks ago...still waiting on remission there...but he got mono and that virus takes for ever to run its course...

ds 3 in remission.

 

PS sorry you are here..but hopefully you will get some great leads to healing!

Edited by Fixit
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Sarah, I believe there are many kids that seem to present with only tics. I know of some that also only have panic attacks/anxiety. The symptoms are varied and a "spectrum". My son had primarily tics, and our journey just started a few months ago, but he just this week admitted to me that he has some touching and walking compulsions that I had no idea about. He also has hyperactivity and some ADHD type trouble in school. Tics can be compulsive to some degree, and kids can hide OCD to a great degree. I now think many of my sons tics are compulsive, but when he's really bad, they seem involuntary.

 

I think you should pursue your gut instincts and look into PANDAS, because there are some treatments that can really help.

 

I also think some kids completely go into remission, and some kids just have a reduction in symptoms until the big treatments are done such as steroids or IVIG. It may depend on how long the autoimmune process has been active, or on how many things are triggers for your child. Some kids seem to be clear cut strep, and if they just keep that in check, they are in remission. Many of us are finding that other illnesses (viruses, mycoplasma, lyme, or allergies, and stress) trigger PANDAS episodes also.

 

Good luck and Best Wishes,

 

Tammy

Tammy,

I hadn't thought about my ds's tics being compulsive vs. involuntary, but now that I'm giving it some thought, I would have to say that might be the case. It's very difficult to unravel what is what when it comes to the tics. Thanks for your helpful response!

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Welcome to the forum! I would say there's different levels in recovery and then ultimate remission. It can take awhile for all the symptoms to resolve. You may see them shed over time. Hopefully, eventually you will have remission without any of the PANDAS symptoms present. When it comes to OCD, for some, they may have residual OCD to overcome, not all have this. I'm not saying the OCD is permanent or needs SSRI's, but one may think about looking into therapies such as CBT or ERP at some point.

 

Yes, you can be the reverse and have more severe tics with mild OCD.

 

I don't know if you've seen these threads, but they have some good information in them ....

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

 

Hello,

I am becoming more and more convinced since reading posts in the forum that my 9 year old was misdiagnosed with TS, instead of PANDAS. I have always been uncomfortable with the ts diagnosis and reading some of the posts about pandas is like reading our own story! I have several questions, first of which is: When a pandas child's symptoms are in "remission", do they completely disappear, or are they just at a reduced level? Also, my son has severe vocal tics (coprolalia) and some motor tics but very mild ocd, is this unusual in pandas? It seems that many people experience the opposite - severe ocd and mild tics.

 

Any information would be very helpful. I am just now learning about pandas and want to be sure my son fits the PANDAS diagnosis before I approach our doctors with the possibility.

Thanks! Sarah

Edited by Vickie
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My ds18 has tics & was dx'd w/TS. His tics have an OCD component to them in that they are triggered by particular sounds or locations & I think also by thoughts.

 

The last time he got an upper resp infxn, the compulsions were coming so randomly that they might have seemed spontaneous had the compulsions not already been so well established at the point. But those eventually settled enough for him to figure out where they were coming from.

 

He doesn't like to talk about them so I've had to figure out a lot by piecing together my own observations over the years with the little snippets of info that he occasionally reveals - this is something that I noticed was different about my ds when I talked to other moms whose kids had TS. Their kids seemed to sort of accept it & take it in stride (relatively speaking); mine was always very secretive about his problem. I was dismayed when I recently learned from him that he actually preferred to be punished by me back when I had no clue what was going on & had misunderstood what he was doing rather than to explain what was really going on.

 

My ds's tics have virtually never remitted (one exception occurred when we first started the immune support plan from our DAN! dr, but it was gone as soon as allergy season kicked in). Instead of the classic "wax & wane" pattern, we say that he "waxes & maintains". He gets worse when there's an illness in the house (usually a virus - we think he's a PITAND rather than a PANDAS) whether he gets it or not, & while the exacerbation might decrease in severity ever so slightly, that pretty much becomes his new baseline.

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Hi Sarah,

 

Glad you found everyone here. I'm fairly new, ds4 diagnosed about 2 months ago but I have learned so much from the parents on this board and gotten some great direction. (this was where we found our Pandas doc) Anyways, my sons tics was what we first noticed. He had very mild OCD. In fact, my hubby, a psychiatrist picked up on the tic before the OCD. And his OCD was very specific for a toddler, so couldn't tell it...for example...believe it or not...Bob the Builder HAD to be the only movie we'd play, that lasted for 2 straight months! Nothing else, or a total meltdown. Once he completed his round of steroids, Bob the Builder was done! :)He wasn't at all interested in it. He'd also have irrational fears, have to turn the lights off in the house (but only when a movie was on, go figure!).

 

After Igenex testing, we discovered past episode of Mycroplasma pneumonia and now positive for Lyme. After a round of steroid and 2 months on high dose antibiotics, his tic, which was constant (touching his head) is gone and OCD is down substantially. We're still new to treatment and only 1 week into Lyme treatment, so we'll see what happens.

 

Hope that helps. and good luck.

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Hi Sarah,

 

That is the case (getting a TS diagnosis) with most of us here, I think, who have kids who have chronic conditions, or who started a few years ago when PANDAS wasn't known. Coprolalia is not a real common symptom from what I gather from asking around here, but my son had a severe episode (his 3rd major) of coprolalia along with OCD. He didn't have bad motor tics with that episode but with his second episode he had SEVERE motor tics and compulsions. When he's in remission he has very little that you can notice. Only I would be able to detect usually. The motor tics do completely disappear.

 

 

 

 

 

Hello,

I am becoming more and more convinced since reading posts in the forum that my 9 year old was misdiagnosed with TS, instead of PANDAS. I have always been uncomfortable with the ts diagnosis and reading some of the posts about pandas is like reading our own story! I have several questions, first of which is: When a pandas child's symptoms are in "remission", do they completely disappear, or are they just at a reduced level? Also, my son has severe vocal tics (coprolalia) and some motor tics but very mild ocd, is this unusual in pandas? It seems that many people experience the opposite - severe ocd and mild tics.

 

Any information would be very helpful. I am just now learning about pandas and want to be sure my son fits the PANDAS diagnosis before I approach our doctors with the possibility.

Thanks! Sarah

Edited by Phasmid
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Hello,

I am becoming more and more convinced since reading posts in the forum that my 9 year old was misdiagnosed with TS, instead of PANDAS. I have always been uncomfortable with the ts diagnosis and reading some of the posts about pandas is like reading our own story! I have several questions, first of which is: When a pandas child's symptoms are in "remission", do they completely disappear, or are they just at a reduced level? Also, my son has severe vocal tics (coprolalia) and some motor tics but very mild ocd, is this unusual in pandas? It seems that many people experience the opposite - severe ocd and mild tics.

 

Any information would be very helpful. I am just now learning about pandas and want to be sure my son fits the PANDAS diagnosis before I approach our doctors with the possibility.

Thanks! Sarah

 

I am new to the forum too. My ds6 has had a tic for 2 months after exposure to Strep. In Nov. Dr. put him on Cedax for 10 days and he got a little better but had a tic. I didn't know about PANDAS at the time so I thought the behavior would extinguish itself. Two months later he still he licks his hands and then wets around his eyes about repeatedly. This week he was dx with Tic Disorder from the pediatrician, but when I mentioned PANDAS and putting him on abx she told me that PANDAS was not his dx. She did refer us onto a neurologist, but 3 days later still do not have an appointment. Blood test for antibodies was run today. Waiting on results. My reason for thinking my son has PANDAS is the sudden onset of tics in conjunction with strep. He was not dx with strep at the time, but he and I were both exposed.

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Hi Sarah,

 

Glad you found everyone here. I'm fairly new, ds4 diagnosed about 2 months ago but I have learned so much from the parents on this board and gotten some great direction. (this was where we found our Pandas doc) Anyways, my sons tics was what we first noticed. He had very mild OCD. In fact, my hubby, a psychiatrist picked up on the tic before the OCD. And his OCD was very specific for a toddler, so couldn't tell it...for example...believe it or not...Bob the Builder HAD to be the only movie we'd play, that lasted for 2 straight months! Nothing else, or a total meltdown. Once he completed his round of steroids, Bob the Builder was done! :)He wasn't at all interested in it. He'd also have irrational fears, have to turn the lights off in the house (but only when a movie was on, go figure!).

 

After Igenex testing, we discovered past episode of Mycroplasma pneumonia and now positive for Lyme. After a round of steroid and 2 months on high dose antibiotics, his tic, which was constant (touching his head) is gone and OCD is down substantially. We're still new to treatment and only 1 week into Lyme treatment, so we'll see what happens.

 

Hope that helps. and good luck.

Hi,

Thanks for the response. Did the Igenex testing identify the pneumonia or just the Lyme for you? When your son had Lymes was he very sick? or can Lymes be like strep and exist sometimes without a whole lot of symptoms? Thanks!

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Hello,

I am becoming more and more convinced since reading posts in the forum that my 9 year old was misdiagnosed with TS, instead of PANDAS. I have always been uncomfortable with the ts diagnosis and reading some of the posts about pandas is like reading our own story! I have several questions, first of which is: When a pandas child's symptoms are in "remission", do they completely disappear, or are they just at a reduced level? Also, my son has severe vocal tics (coprolalia) and some motor tics but very mild ocd, is this unusual in pandas? It seems that many people experience the opposite - severe ocd and mild tics.

 

Any information would be very helpful. I am just now learning about pandas and want to be sure my son fits the PANDAS diagnosis before I approach our doctors with the possibility.

Thanks! Sarah

 

I am new to the forum too. My ds6 has had a tic for 2 months after exposure to Strep. In Nov. Dr. put him on Cedax for 10 days and he got a little better but had a tic. I didn't know about PANDAS at the time so I thought the behavior would extinguish itself. Two months later he still he licks his hands and then wets around his eyes about repeatedly. This week he was dx with Tic Disorder from the pediatrician, but when I mentioned PANDAS and putting him on abx she told me that PANDAS was not his dx. She did refer us onto a neurologist, but 3 days later still do not have an appointment. Blood test for antibodies was run today. Waiting on results. My reason for thinking my son has PANDAS is the sudden onset of tics in conjunction with strep. He was not dx with strep at the time, but he and I were both exposed.

Hi,

My son wasn't diagnosed with strep prior to his onset either, in fact, I had taken him for a swab culture and it turned out negative which was why, when initially diagnosed with TS, I didn't really research the possiblity of pandas. Did your pediatrician order the test for antibodies?

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just to let you know strep could have been there much earlier....

 

ie my new panda...had strep 11/11/10...still thought he was non panda...

12/16/10 throws up stays home from school...

12/21/10think i notice i tic (my heart sinks as i thought he was my healthy kid).

12/22 start abx...nine days later pretty sure tic is gone...

3 days form that starts to tic again...take to walk in has ear infection while on abx

and 3 days from there as he still goes down hill...comfirms positive on mono test...if you have mono you are 60% more likeyly to also have strep....so was it the chicken or the egg, on strep or mono.. for what incubation period..

 

strep antibodies/titers rise 4-10 weeks post infection...for my ds8 that was was peak time to slammed witha nother illness

 

once triggered...mono, mycoplasma pneumaae, allergies etc can trigger and maintian episode...

allergy season is going to start any day here in GA...so i am trying to brace myself

 

hopefully besides aso and antidnase...you checked for

mono

ebv

myco p igg igm

tsh t3 t4

ferritin

igenex western blot or equivalant

 

for my ds10 i am sure myco p set off his last episode...myco and lymes have a high co-infection rate like mono and strep

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Hi Sarah,

I haven't read all the resonses...but here is a video (by a lady with tourettes) that talks about how tics and compulsions are on a spectrum, and how to tell them apart:

http://www.youtube.com/watch?v=eaZf2GzFsqw

 

Also, here is a link to 3 podcasts also have lots of great info. on PANDAS. You can stick them in an ipod and listen to them "on the go". They are interviews with 3 top PANDAS docs:

http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

Edited by EAMom
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