TICS/PANDAS

[myrose]

I am waiting for Doctor call backs and more of my daughters records to be mailed.

In the meantime I am just trying to arm myself with info.

 

My question and please forgive it, if it seems like everything I have already asked but I am curious.

Just wondering if there is one symptom that stands out more in the case of Pandas/Tourettes/Tic Disorders.

 

For instance I heard and read (on here) that the frequent bathroom urges were a classic sign of pandas. But then I also heard it could be a bladder tic and also be a part of OCD.

 

So is there one common symptom, whether a tic or anything that is usually seen more in Pandas, Tics or? Tourettes?

 

One that maybe stands out?

 

I realize that most all of the symptoms could account for any of the diagnosis but I am just curious if someone who has been reading the boards for a long time ever picked up on similaritys relating specificially to Pandas, Tics or Tourettes?

 

 

I also remember reading that tourettes tics were different than Tic disorder tics???? And one could tell the difference?

 

I must have buried all my info in my head! Feel like I am starting over here!!!!!

[Chemar]

((((((((((((myrose))))))))))))

 

I can only imagine how confused and frustrated you are feeling but hopefully by completing the additional testing you will have clear answers. Just so thankful your daughter is doing well now and praying for continued good health for her

 

as I can only speak about Tourette Syndrome from personal experience I will limit my comments to that, and keep them real simple for clarity

My comments are based on my family observations (3 generations of TS on husband's side known), my own "research" (including all the anecdotal info on many forums) and also what was explained to us by various physicians over the past 8 years, most notably Dr Vincent, who used to be an associate of Dr Murphy before he moved abroad. He taught me a great deal and also gave me a number of research articles to read to help me finally to understand the unique aspects of OCD related to TS

 

Tourette Syndrome is characterized by motor and vocal tics.

All people with TS have tics, and these are both motor and vocal, although they are not necessarily present simultaneously.

TS tics wax and wane characteristically

 

Some people with TS may also have also have OCD.

The OCD that accompanies TS seems to be of a different subtype than "classic" OCD, and tics and OCD symptoms can sometimes "morph". This IMO often distinguishes OCD related to TS from other OCD sx

so

in a nutshell

Not everyone who has TS has OCD, but everyone who has TS has motor and vocal tics.

Therefore the most distinguishing characteristic of Tourette Syndrome is motor and vocal tics

 

 

 

[P_Mom]

My Rose,

I struggled with that same question...particularly in regards to my older son. How can we tell TS and PANDAS apart? Well, what I have found, there is no way to actually look at the tics themselves or the OCD, etc., and be able to distinguish it. No doctor has been able to tell me how to determine the difference just by observation of symptoms alone. You have to look at the whole picture...symptom onset, course, strep/illness/vaccination correlation etc, waxing and waning, response to antibiotics, etc.

 

I know it is hard....I am also glad your daughter is doing well.

 

By the way.....my kids never had the frequent urination. It is so varied.......

[Dedee]

My suggestion to many is to keep a log (we do a spread sheet), of your childs behavior and severity of tics. Also, put in what is going on in their life at school, any illnesses, medications, other stressors, etc. We did it daily for months. When you look back you can see a pattern of behavior or increase of tics to either illness, or maybe just to stress. Point is, you should be able to identify if this is something that has a pattern based on illnesses or does it have a natural wax and wane pattern. Someone on this board suggested this to me years ago and it has been so helpful. We have been able to pinpoint to the hour almost when tics would return after stopping antibiotics and when they would resolve after starting them back. It helps to show the doctor a pattern as well. It seems very time consuming but once you have it set up it only takes a couple of minutes at the end of the day to type something in the file about the day and save. It's a great reference. Good luck and glad to hear things are improving.

 

Dedee

[myrose]

Dedee unfortunately my daughter is on topamax, so her tics, ocd, sensory and other issues are gone. This is my dilema....The only thing would be to go off from the topamax but until I get all the facts together and talk to some more Doctors including her neurologist I am just going to let things be. I would have to also wait for a break in school to do this. I just can't put her through anymore at this time. But as I have said I need to know and want to know if she is being treated correctly. When the time comes...and I have some doctors to back me up I will eventually have to do this. Right now I am just gathering input and experiences as to maybe better prepare myself for when and if the time does come when we need to do this....

Thank you though for your suggestion. I started a log as well a bit back when it all started. I also kept the food journals. Thanks to the board as well!