How much does inflammation play into PANDAS

[thereishope]

I also read that Mycroplasma is also known to cause Tourette's. However, I don't know if the mycro P is erradicated, if the Tourette's induced by it stays or goes away (making it PITAND).

[Chemar]

I also read that Mycroplasma is also known to cause Tourette's. However, I don't know if the mycro P is erradicated, if the Tourette's induced by it stays or goes away (making it PITAND).

 

I think it would more be that mycoplasma can be a trigger to switch on TS.

I personally dont think there is one single "cause" for tourette syndrome, but rather, that those with the genetic predisposition become vulnerable to a number of triggers, infection being just one.

[simplygina]

The only thing I can add to this conversation is that when my dd takes Advil or gets a prednisone burst, her symptoms reduce significantly. In my mind the ocd/tics are directly related to how much inflammation is in the basal ganglia at the time.

 

i forgot to add ibuprofen to my list (poor kid takes so many darn pills). i searched long and hard to find one without any dyes and finally decided to go with the softgels since they are blue over the tablets because they all had red dye. anyone know of a chain store that sells plain white ibuprofen?

[bubbasmom]

I don't know all of the details of all the studies, but I will say this I can look at my son's face and tell if we're in for a good day or bad day. On bad days his whole face is swollen, eyes, nose, cheeks. He also gets zits on his nose when it's going to be a bad day. Yet I never see it coming, how is that? lol Its like Christmas, we all know its coming every year yet we're so surprised when it gets here! I know we're in for bad days, yet I'm so surprised when we have one. Go figure.

(but NSAID's do nothing for him, I've heard other that have tried that - and steroids make him nuts so we avoid those)

[Chemar]

(but NSAID's do nothing for him, I've heard other that have tried that - and steroids make him nuts so we avoid those)

 

my TS husband(in his 60s) had massive tic triggers and other alarming reactions to the steroids and altho he didnt get as psychotic as clonidine made him he had a "nuts" element to his reaction tho it was more massive panic/fear/phobia kind. he still feels (a year + later) the steroids altered his cognitive focus as well as the elevation of his TS tics, some that he hadnt had since childhood

 

as an aside, and something I have posted before on the TS forum here, altho my husband has genetic TS/ OCD etc (considered "bad habits, moodiness & eccentricities" when he was a child, his grandad and dad had them too)...he does have a vague recollection of the stories his mom told of him nearly dying from a strep infection/fever as an very young child, and that he had it so bad, his grandmother put him in a tub of ice water to control the raging fever.

 

His mom and dad are deceased now, so I cant try to get more info on that, but I wonder if that strep ? scarlet fever could have been what "triggered" my hubby's TS etc

[peglem]

(but NSAID's do nothing for him, I've heard other that have tried that - and steroids make him nuts so we avoid those)

 

my TS husband(in his 60s) had massive tic triggers and other alarming reactions to the steroids and altho he didnt get as psychotic as clonidine made him he had a "nuts" element to his reaction tho it was more massive panic/fear/phobia kind. he still feels (a year + later) the steroids altered his cognitive focus as well as the elevation of his TS tics, some that he hadnt had since childhood

 

as an aside, and something I have posted before on the TS forum here, altho my husband has genetic TS/ OCD etc (considered "bad habits, moodiness & eccentricities" when he was a child, his grandad and dad had them too)...he does have a vague recollection of the stories his mom told of him nearly dying from a strep infection/fever as an very young child, and that he had it so bad, his grandmother put him in a tub of ice water to control the raging fever.

 

His mom and dad are deceased now, so I cant try to get more info on that, but I wonder if that strep ? scarlet fever could have been what "triggered" my hubby's TS etc

Chemar, Has your husband or son ever had any immune system testing or been looked at for autoimmune problems?

[simplygina]

(but NSAID's do nothing for him, I've heard other that have tried that - and steroids make him nuts so we avoid those)

 

my TS husband(in his 60s) had massive tic triggers and other alarming reactions to the steroids and altho he didnt get as psychotic as clonidine made him he had a "nuts" element to his reaction tho it was more massive panic/fear/phobia kind. he still feels (a year + later) the steroids altered his cognitive focus as well as the elevation of his TS tics, some that he hadnt had since childhood

 

as an aside, and something I have posted before on the TS forum here, altho my husband has genetic TS/ OCD etc (considered "bad habits, moodiness & eccentricities" when he was a child, his grandad and dad had them too)...he does have a vague recollection of the stories his mom told of him nearly dying from a strep infection/fever as an very young child, and that he had it so bad, his grandmother put him in a tub of ice water to control the raging fever.

 

His mom and dad are deceased now, so I cant try to get more info on that, but I wonder if that strep ? scarlet fever could have been what "triggered" my hubby's TS etc

 

I realize your son is grown and doing really well, but did you ever consider PANDAS? I've noticed in several posts you say that his TS/OCD is the regular kind because both your DH and other family members have it too. But PANDAS also seems to run in families. At the age your son and DH are its obviously

neither here nor there. Just curious. I guess I'm still looking for clues to whether we are dealing with PANDAS or not.

[Chemar]

I realize your son is grown and doing really well, but did you ever consider PANDAS? I've noticed in several posts you say that his TS/OCD is the regular kind because both your DH and other family members have it too. But PANDAS also seems to run in families. At the age your son and DH are its obviously

neither here nor there. Just curious. I guess I'm still looking for clues to whether we are dealing with PANDAS or not.

 

Hi

yes, we had my son under the care of one of the early PANDAS researchers dr Tanya Murphy for over 6 months(2000/2001) when he was newly diagnosed TS as, altho we have a clear family history of TS and my son had mild tics and other neuro stuff from infancy, his sudden and dramatic onset of severe tics and OCD and depression just after his 10th birthday made me want to check re PANDAS, which I had read about on the net, in a piece about dr Murphy

 

my son has never had strep infection that we are aware of, and all the cultures and titres etc indicated to dr Murphy that he was not PANDAS, tho they didnt rule out PITAND, as he was +ve for epstein barr (no mono)

 

 

he also seems to react negatively to prescription antibiotics so not a treatment option, tho as mentioned above, he has been on assorted natural antimicrobials as supps and dietary additions for many years

[Chemar]

[

Chemar, Has your husband or son ever had any immune system testing or been looked at for autoimmune problems?

 

Hi Peglem

 

yes, as mentioned, my son has Crohn's Disease which is autoimmune

 

my husband doesnt appear to have any autoimmune illness, but his mother had crippling rheumatoid arthritis

[simplygina]

I realize your son is grown and doing really well, but did you ever consider PANDAS? I've noticed in several posts you say that his TS/OCD is the regular kind because both your DH and other family members have it too. But PANDAS also seems to run in families. At the age your son and DH are its obviously

neither here nor there. Just curious. I guess I'm still looking for clues to whether we are dealing with PANDAS or not.

 

Hi

yes, we had my son under the care of one of the early PANDAS researchers dr Tanya Murphy for over 6 months(2000/2001) when he was newly diagnosed TS as, altho we have a clear family history of TS and my son had mild tics and other neuro stuff from infancy, his sudden and dramatic onset of severe tics and OCD and depression just after his 10th birthday made me want to check re PANDAS, which I had read about on the net, in a piece about dr Murphy

 

my son has never had strep infection that we are aware of, and all the cultures and titres etc indicated to dr Murphy that he was not PANDAS, tho they didnt rule out PITAND, as he was +ve for epstein barr (no mono)

 

 

he also seems to react negatively to prescription antibiotics so not a treatment option, tho as mentioned above, he has been on assorted natural antimicrobials as supps and dietary additions for many years

 

Thanks for the info!