Keen Home  | Blog Policies  | Help
Welcome to Community Sign in | Join | Help

The Drumming Dervish

Coffee Chat Musings . . . Juicy Blessings ( & lots o' yummy, interesting stuff:-)

PANDAS DISEASE: A hidden reason for your child's behavior!

Obsessive compulsive, tics, tourettes, ADHD, 'ants in pants', oppositional &/or defiant, clingy, mood swings, bed wetting, impulsive, compulsive . . . at least five of these? Sudden onset at around or after age 4 years old?

You may be dealing with more than your garden variety hyperactive child, this may be PANDAS whose source is rooted in a streptococcus illness which your child has had. He may no longer have the active strep in his body, but will be REACTING to the strep neurologically and behaviorally all the same!

If you feel so drawn, check out the following links and information: 

http://intramural.nimh.nih.gov/pdn/web.htm

http://cbtny.com/pandas

"PANDAS is a disorder that typically begins in early childhood (ages 4-10).  PANDAS symptoms include tics, obsessions and compulsions, mood swings, temper tantrums, attention difficulties, hyperactivity, impulsivity, and unusual movements called choreiform movements.  PANDAS has an episodic course which comes and goes with the strep infection.  However, the child may or may not have strep symptoms so it is often difficult to tell if you are dealing with PANDAS or not. In fact, many individuals never experience acute strep symptoms, and exacerbations can occur immediately following or several weeks after acute strep symptoms disappear. Symptom exacerbations are often rapid and dramatic, while symptom remissions are often slower."

http://intramural.nimh.nih.gov/pdn/recent_publications.htm

http://www.tourettesyndrome.net/links_pandas.htm

"What are the diagnostic criteria for PANDAS?
Pandas is diagnosed if there is an episodic history of the following symptoms associated with strep infections.

Presence of Obsessive-compulsive disorder and/or a tic disorder, ADHD symptoms or oppositional behaviours 
Association with neurological abnormalities (motor hyperactivity, or adventitious  movements, such as choreiform movements)
Paediatric onset of symptoms (age 3 years to puberty)
Episodic course of symptom severity. (symptoms come and go)
Association with group A Beta-hemolytic streptococcal infection (GABHS)
GABHS evidenced by either a positive throat culture for strep or positive for streptococcus serology (ASOT or AntiDNAse-B)
A history of Scarlet Fever or Rheumatic fever "

http://www.adhd.com.au/PANDAS.htm

 

Published Thursday, May 17, 2007 1:56 PM by Ms Claritynow
Filed Under: ,

Comment Notification

Subscribe to this post's comments using RSS

Comments

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, May 17, 2007 5:25 PM

Thank you this is really exceptional information.  Keep up the excellent work!

Rosie

Rosalea

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Friday, May 18, 2007 6:53 AM

My child has been diagnosed with PANDAS, with almost no hope forthcoming (including a major university medical center) we found hope in Chicago. If you think your child may have PANDAS (Pediatric Autoimmune neuropsychiatric Disorder Associated with Strep) check out http://www.webpediatrics.com/ and click on PANDAS. This physician saved my child's life. Have a beautiful day. PS, if you need to chat get back with Ms. Clarity Now and she can hook us up.

Elizabeth

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Friday, May 18, 2007 6:53 AM

My child has been diagnosed with PANDAS, with almost no hope forthcoming (including a major university medical center) we found hope in Chicago. If you think your child may have PANDAS (Pediatric Autoimmune neuropsychiatric Disorder Associated with Strep) check out http://www.webpediatrics.com/ and click on PANDAS. This physician saved my child's life. Have a beautiful day. PS, if you need to chat get back with Ms. Clarity Now and she can hook us up.

Elizabeth

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Friday, May 18, 2007 6:58 AM

Thanks Elizabeth!! I'm sure you can be of great help to someone who reads this!!!

Ms Claritynow

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, August 30, 2007 11:46 AM

How do I reach Elizabeth to discuss this with her?

Travis

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Saturday, September 08, 2007 6:37 PM

I too would like to chat w/Elizabeth.  My son was just told he has PANDAS this Friday.

Allison

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Wednesday, October 17, 2007 9:11 AM

How do I get in contact with Elizabeth concerning PANDAS?
Kelly  DKRE@verizon.net

KellyASmith

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Wednesday, October 17, 2007 9:15 AM

Actually, anyone with experience with this disorder, (PANDAS) please contact me.   Elizabeth...Please contact me, I also have been in touch with Dr. K in Chicago.  I am wondering what your experience with him has been, we are considering going out to see him.  (we live in Pittsburgh)
DKRE@verizon.net

KellyASmith

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Wednesday, January 02, 2008 11:04 PM

My son also has Pandas - we are also patients of Dr. K - who is the most amazing person as well as doctor -

I had thought I lost my son - (2 years ago sept) - Today Dr. K states he is "cured" - I will continue to watch and worry - however my son - is back

Leslee

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, January 03, 2008 11:29 AM

Hello all, I wish I could get you in touch with Elizabeth I have no information in order to give you. It's blocked with keen information rules.  However I do want to report that my friend with her son who went through treatment is doing great!

Ms Claritynow

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Monday, January 07, 2008 8:17 PM

My son has autism and was diagnosed with PANDAS last month. His PANDAS profile is a nightmare!!  This follows a strep infection in August.

My world is falling apart. He came so far with his autism and now I think this is worse. It's ruining our lives.

Do you  have to go to Dr. K for this or can this be done anywhere

Kerrie

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Tuesday, January 08, 2008 9:32 AM

Contact me at junemurray2000@yahoo.com, I apologize to all those trying to get in touch with me. I am new to blogging and after the first few days I never thought to go back and look at the responses. I hope any who have tried to reach me will get in touch. It is  a terrible disorder and anyone who has encountered it needs all the support they can muster. Sincerely, Elizabeth

Elizabeth

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Tuesday, January 08, 2008 8:16 PM

I wanted to send a note to Kerrie - that Dr. K - Dr. Kovacevic
Also specializes in Autism!

Leslee

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, January 10, 2008 6:56 PM

Kerrie, other doctor's can do the IVIG but it is tough to get them to do it. We were at a major university medical center and they wouldn't do it. They wanted our son to try a bunch of different psych meds first. Please contact Dr. K. He will work with your child's pediatrician. The cost can be prohibitive but he talked to our insurance company and they paid the whole thing even though it was not covered initially. Even if you don't use Dr. K he does consultations which can be helpful.

Elizabeth

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Friday, January 25, 2008 6:13 PM

My six year old son has PANDAS. He was diagnosed at Shands clinic at Florida by Dr. Tanya Murphy this fall. He has been suffering from this for five years. He is curently on Omniseph daily. I want to know how to treat this in the future if he continues to have episodes and get worse. He suffers from OCD, emotional liability, tics, fixed interests and frquent urination. Each episode seems to get worse and last longer. Is there someone out there that can talk to me that has been through this and has found treatments that work? How can I get him better? Thanks for your time.

michele_223@hotmail.com

michele

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Monday, February 25, 2008 12:22 PM

I am thrilled about all comments. My son is 11 and was diagnosed 8 months ago. This has actually been hell on earth! Hopefully someday I will have my "old" child back.  

Billie Greenfield

# PANDAS DISEASE, A HIDDEN REASON FOR YOUR CHILD'S BEHAVIOR @ Wednesday, February 27, 2008 7:09 AM


Obsessive compulsive, tics, tourettes, ADHD, 'ants in pants', oppositional &/or defiant, clingy,...

COFFEE CHAT & SPIRIT CAKE!

# PANDAS DISEASE, A HIDDEN REASON FOR YOUR CHILD'S BEHAVIOR (re-post) @ Wednesday, February 27, 2008 7:15 AM


Obsessive compulsive, tics, tourettes, ADHD, 'ants in pants', oppositional &/or defiant, clingy,...

COFFEE CHAT & SPIRIT CAKE!

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, February 28, 2008 11:30 AM

Elizabeth, I emailed you at Junemurray200@yahoo.com and it keeps coming back. Do I have the right address?  Thanks Billie

Billie

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Saturday, March 01, 2008 11:22 PM

Junemurray2000@yahoo.com

Ms Claritynow

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Monday, March 03, 2008 1:11 AM

Anyone who would like to talk to me about my experience with PANDAS or Dr. K. please feel free to e mail me at junemurray2000@yahoo.com or jumurray@umich.edu.

June Murray

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Friday, March 07, 2008 9:14 AM

Both of my sons, now 9 and 12 have Pandas.  I've been understanding it now and dealing with it medication-free for a few years.  My younger son was 5 when diagnosed and I never understood it, now I do..if any questions...please email me at wncoury@gmail.com

Nancy Matera

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Monday, November 03, 2008 11:46 AM

my son has just been diagnosed at 14 with the damage left by a strep infection at 8 yrs old his symptoms have got gradually worse and are hell to deal with now im just researchin and im sure they are meanin its pandas he fits all the criteria , has anyone else had symptoms getin worse over this many years?? they were edgin towards tourettes but his blood tests have just come back from london testin for the effects of the strep as positive so im confused at the moment and would just like to know of similar experiences and advice people can offer me he is currently takin haloperidol 3 mg twice a day its just been upped to as his tics were returnin and wen he first started the meds they stopped them does anyone else use this drug? and if so how is it workin for you ? please email me at soznic@hotmail.com thanks from nicola

nicola moorby

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, March 26, 2009 12:20 PM

Hi

I'm an award-winning journalist who has been honored with a Carter fellowship for my work in covering brain diseases and mental health, issues that have affected my own family.

If any one is interested in being interviewed for a piece about PANDAS for public radio, please contact me at hjulianne@rocketmail.com.

I look forward to hearing from you.

Best,


Julianne

Julianne

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Sunday, May 17, 2009 7:44 PM

My daughter was diagnosed 5 years ago.  We found an excellent neurologist, Rosario Trifiletti, at Morristown Memorial Hospital in NJ.  He put her on Depakote.  It controls her movement symptoms.  No other neuroligist we tried would try this medicine, even though it truly helps.  I recommend you see this doctor.  He is truly wonderful.  I can relate to every word I read on this page.  Please contact him... It may help.
More later.
Jacki

jacki

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, May 21, 2009 8:56 PM

I was diagnosed with PANDAS at age 9. I honestly don't know much about the disease itsel because I wasn't my mother or my father at the time. I know it was tough for them and I can definitley help you understand the view of the child going through it. I mostly remember lots and lots of pills and lots and lots of hospital trips. It finally began to get better around 5th grade, but I was then diagnosed in 6th grade with a bad case of OCD. This lasted for another 2 years and comes and goes. When I'm stressed, my tics sometimes flare up and it often worries my parents... I'm sure. They're tough though and try to make me tough; so tough that whenever I'm sick they sort of refuse the idea. I'm sixteen now and ten times better and healthy since I was diagnosed. I'm willing to answer any questions.

alyssaleighm@hotmail.com

alyssa

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Wednesday, June 24, 2009 6:49 PM

Our daughter is almost 8 years of age and this nightmare began for us around age 4.  Her symptoms were extreme behavioral issues (happy one second and then as if she were possessed by a demon something would snap - usually in school, and she'd go from laughing and playing to screaming, crying, kicking, biting, hitting, spitting, raging, tearing things up, trying to break things...all the while her eyes would eerily look blank).  She's been subjected to countless painful blood tests looking for anything under the sun.  They all appear to  come back flawless with one exception - extremly high ASO titer levels.  

The only sure fire method to completely return her back to her happy and normal self were long term courses of antibiotics.  Unfortunately it's difficult to find a doctor who subscribes to the PANDAS theory - most have told us they don't believe in it.  The next set of doctors say they've only heard about it but certainly are far from the authority to help us (nobody is willing to go the extra mile), and then you get the one percent that are so on track but don't accept insurance and their fees are astronomical.  It's a complete nightmare.  

The list of doctors we've seen are ridiculous - we almost need a medical advocate (if there were such a thing) to help us keep track of the piles of copies from her various charts and to sit with the doctors to explain our situation.  We find most have formed their opinions within the first two to three minutes - they all believe she needs to be put on SSRIs.  Sure.  The easy, and lazy answer.    

Doctors we've seen?  Psychologists, Psychiatrists, Neurologists, Geneticists, Pediatricians, Nurse Practitioners, Developmental Specialists, Cognitive Behavioral Therapists, Immunologists, Infectious Diseasae Specialists - just to name a few.  Seriously folks - we've been to them all and in some cases multiples from the same field.

4 years is a long time to deal with this, and so as most of you who are still reading can imagine - there is so much more to our sad story.  And so I will leave you all with the latest update... for the first time ever, a doctor actually quit on us because we refused to put her back on a psychotropic medication ...and because we refuse to close the door to the possibility that this could be PANDAS.  

I'm happy to talk to anyone who has questions, although I'm not sure I have many answers.  I just desperately wish the researchers at Yale would get their funding so we can hopefully be part of the studies and further the attention of this debilitating disease.

Lacy in Virginia

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Tuesday, August 11, 2009 8:22 AM

I am a 19 year who has jsut got diagnosed with pandas a month ago when I was eighteen. I was extemely sick for 8 months and no doctor could help. Then I found a neurologist named Dr. Jones he found that in a blood test that I had strep and I have had for 6 or 8 months. This caused my extreme tics, my entire body would shake my rihgt arm would raise and shake . my lips would blow out and make the rasberry noise constintly. I was put in a ambulance because they looked like seizures but I was wide awake. I had my tics throuhg my entire graduation cermony. But I am better now I has put on haloperidol to stop the tics till my test results were in. Then I was put on penicillian for 10 days after that it took about 2 weeks and all my sysmptoms went away. Right now I am on no medicine and I am doing well . But if I get extremly stressed I will have my tics. My doctor made me aware if get strep again everthing will come back. I understand what its like to suffer with this disease. If anyone would like to contact me bosco1chicky@aol. om

Vanessa

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, March 18, 2010 2:13 PM

How  can  I  help  our  pereshes  pandas?  type  me  up  at  Hlehmann1@yahoo.com

Hikquwan ma jaluky

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Monday, May 03, 2010 1:48 PM

Pepsi is sponsoring $50,000 in research grant money to the top 10 projects with the most votes in May.  I believe you can vote once each day through May, you may be limited to 10 votes total.  The money would go to Dr. Cunningham's work on PANDAS diagnostic test research.  Please vote daily and encourage others to vote also.  There is a facebook page promoting this also that you could join and share with friends.  Thank you!!!  My son who is 10 has PANDAS and has had it for over four years.  We have recently figured all of this out and are seeking treatment.  http://www.refresheverything.com/pandas

Lori Oppenlander

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, June 24, 2010 7:25 PM

My son was diagnosed with PANDAS in 1998.  At that time almost no one had ever heard of PANDAS.  We were beside ourselves because nobody knew what to do.  I invite you to go to my website to see how my son overcame a very severe case!  Go to:  www.pandasconnection.com.  

Beth Eberhardt

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Sunday, February 05, 2012 6:00 PM

Does anyone have time, and email me about their journey? I am currently 12 and was diagnosed with this last September.

Ajritter99@gmail.com

Ashley

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Friday, April 27, 2012 2:03 PM

I live in London, England and I'm lost about where to go to get my son tested.  I've been to my doctor who refused to blood test him (didn't want to put him through it) and wouldn't even give me a weeks antibiotics to see if it helped the tics that have come about 4 weeks ago after a "bad throat".  I just want to see a specialist who will help me, not me trying to educate the doctors.  My poor son has been ticing away for four weeks now and I have just put 2 and 2 together and realised that what has been going on for the past two years could be PANDAS.  If anyone can help, please.  Thank you.

Maria

# re: PANDAS DISEASE: A hidden reason for your child's behavior! @ Thursday, May 17, 2012 1:14 AM

Hi Maria...my son is almost 9 and has had PANDAS for 4 years now!  I have dealt with doctors who have refused to treat him or even listen to what is going on.  You need to find a doctor who will treat the strep with anitbiotics, then give your child a lrg amount of fish oil and you can also use olive leaf extract.  It is also very important to make sure he is not around anyone who has strep and have his throat cultured for strep whenever his symptoms start acting up again.  I hope that this help...feel free to email me at wong.nicole19@gmail.com

Nicole Wong

What do you think?

(required) 
(required) 
(required) 
Enter the numbers you see into the
field below.
(required)