Can Tics/OCD caused by PANDAS be cured?

[szcasey]

Hi everyone,

 

I'm relatively new to this forum. A brief introduction... I have a 7 yo son who had sudden and debilitating motor tics begin 10.9.07. The tics caused his entire body to thrust forward and he'd often fall. Other symptoms included a new fear of going to bed at night, frequent night terrors, some bed wetting, frequent rage episodes and separation anxiety. We went through all sorts of tests to rule out cancer, tumors, seizures, etc. We had allergy testing done and removed all food allergies/intolerances and added supplements and the tics improved. In March 2008, he developed a strange rash his trunk and the MD never diagnosed it. In April we had blood work done which showed a strep infection and he was treated for strep. No tics were apparent during antibiotic treatment. Fast forward to 2009... vocal tics begin and we get the TS diagnosis.

 

I've read contradicting (and confusing) information about PANDAS. Can motor tics and/or OCD caused by PANDAS be cured? Can PANDAS be cured? Would love to hear stories and would appreciate any advice.

 

I've just read "Saving Sammy, the Boy Who Caught OCD" by Beth Maloney and it's really given me a lot of hope for my son. I highly recommend her book.

 

Thanks in advance. Kind regards,

Sarah

[EAMom]

Hi everyone,

 

I've read contradicting (and confusing) information about PANDAS. Can motor tics and/or OCD caused by PANDAS be cured? Can PANDAS be cured?

 

Yes. Long term (often full-strength) abs are needed so erradicate strep and prevent future infections (like rheumatic fever). Sometimes you need to add on immunomodulatory treatments (steroids, pex, ivig...not necessarily long term). Sometimes reaching adolescence/adulthood helps.

 

Tics may be more resistant to treatment than OCD.

 

Read through old posts and Buster's FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

 

Also look through the thread http://www.latitudes.org/forums/index.php?showtopic=5023 of recommended docs...if you are in CT you are driving distance to some great docs: Dr. Trifiletti (NJ) and Dr. Boubolis (sp?--CT)

 

Is your son currently on abs? Which one and what dose? Have you recently throat cultured him (as well as family members to check for carriers)?

[thereishope]

I think it depends on what your definition of cured is. I think these kids can achieve fully functioning lives and return to their previous selves. Hopefully PANDAS can be a thing in the past and never have it surface again. I would say that the problems that arrise during an exacerbation may be able to be cured, but as for the actual immune disorder...I see it more as remission.

[EAMom]

I think the kids that "outgrow it" might be cured (perhaps the blood brain barrier closes as the child grows up). But, I agree Vickie, for the most part, I'd really consider it (hopefully a long-lasting, lifetime) remission.

[T_Mom]

Another very helpful website with information:

 

www.pandasnetwork.org

[szcasey]

Thanks so much for your responses, EAMOM, Vikie and T.Mom! I appreciate your comments, links and suggestions!!

 

EAMOM, Chris is currently being treated for Lyme Disease; he's been on abx since 9.2009. He's taking azithromycin 250 mg in the AM and Rifampin 150 mg in the evening. 20-30 minutes after Rifampin, his motor and vocal tics are a lot worse. After azith, his tics seem to subside. We actually have a follow-up with his Lyme literate MD, Charles Ray Jones today.

 

He has been treated for strep in the past (Chris and I get it a lot). He's tic free on augmentin but I don't have the dose. I believe that he had Rheumatic Fever in 3.2008 five months after the sudden onset of motor tics. I have pictures of the rash and never made the connection between sudden motor tics and strep until "accidently" reading about PANDAS.

 

I'm currently taking abx for strep and I've noticed that Chris' motor tic is a bit worse in the evening. He's not showing symptoms of Strep but now I am thinking that he may have it...

 

I made an appointment for 2.09.10 with Dr. Murray Engel a neurologist in Stamford, CT who treats PANDAS.

 

Fingers crossed!

 

Again, thanks so much for your comments!

 

Best,

Sarah

[szcasey]

UGH... I'm still getting used to posting here. I posted my first response in the wrong area!! I somehow only responded to EAMOM. Here it is again...

 

Thanks so much for your responses, EAMOM, Vickie and T.Mom! I appreciate your comments, links and suggestions!!

 

EAMOM, Chris is currently being treated for Lyme Disease; he's been on abx since 9.2009. He's taking azithromycin 250 mg in the AM and Rifampin 150 mg in the evening. 20-30 minutes after Rifampin, his motor and vocal tics are a lot worse. After azith, his tics seem to subside. We actually have a follow-up with his Lyme literate MD, Charles Ray Jones today.

 

He has been treated for strep in the past (Chris and I get it a lot). He's tic free on augmentin but I don't have the dose. I believe that he had Rheumatic Fever in 3.2008 five months after the sudden onset of motor tics. I have pictures of the rash and never made the connection between sudden motor tics and strep until "accidently" reading about PANDAS.

 

I'm currently taking abx for strep and I've noticed that Chris' motor tic is a bit worse in the evening. He's not showing symptoms of Strep but now I am thinking that he may have it...

 

I made an appointment for 2.09.10 with Dr. Murray Engel a neurologist in Stamford, CT who treats PANDAS.

 

Fingers crossed!

 

Again, thanks so much for your comments!

 

Best,

Sarah

[EAMom]

I made an appointment for 2.09.10 with Dr. Murray Engel a neurologist in Stamford, CT who treats PANDAS.

 

Hi Sarah,

I'm not familiar with Dr. Engel. Let us know how it goes. Maybe if someone else has seen him they will chime in.