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Sunday, August 03, 2008 1:30 AM Ms Claritynow

PANDAS DISEASE AND YOUR CHILD'S BEHAVIOR (repeat popular blog)

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

 


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

[Remove this Comment] Thursday, May 17, 2007 5:25 PM by Rosalea
Thank you this is really exceptional information.  Keep up the excellent work!

Rosie

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

[Remove this Comment] Friday, May 18, 2007 6:53 AM by Elizabeth
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.

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

[Remove this Comment] Friday, May 18, 2007 6:53 AM by Elizabeth
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.

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

[Remove this Comment] Friday, May 18, 2007 6:58 AM by Ms Claritynow
Thanks Elizabeth!! I'm sure you can be of great help to someone who reads this!!!

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

[Remove this Comment] Thursday, August 30, 2007 11:46 AM by Travis
How do I reach Elizabeth to discuss this with her?

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

[Remove this Comment] Saturday, September 08, 2007 6:37 PM by Allison
I too would like to chat w/Elizabeth.  My son was just told he has PANDAS this Friday.

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

[Remove this Comment] Wednesday, October 17, 2007 9:11 AM by KellyASmith
How do I get in contact with Elizabeth concerning PANDAS?
Kelly  DKRE@verizon.net

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

[Remove this Comment] Wednesday, October 17, 2007 9:15 AM by KellyASmith
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

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

[Remove this Comment] Wednesday, January 02, 2008 11:04 PM by Leslee
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

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

[Remove this Comment] Thursday, January 03, 2008 11:29 AM by Ms Claritynow
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!

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

[Remove this Comment] Monday, January 07, 2008 8:17 PM by Kerrie
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

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

[Remove this Comment] Tuesday, January 08, 2008 9:32 AM by Elizabeth
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

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

[Remove this Comment] Tuesday, January 08, 2008 8:16 PM by Leslee
I wanted to send a note to Kerrie - that Dr. K - Dr. Kovacevic
Also specializes in Autism!

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

[Remove this Comment] Thursday, January 10, 2008 6:56 PM by Elizabeth
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.

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

[Remove this Comment] Friday, January 25, 2008 6:13 PM by michele
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

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

[Remove this Comment] Monday, February 25, 2008 12:22 PM by Billie Greenfield
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.  

# PANDAS DISEASE, A HIDDEN REASON FOR YOUR CHILD'S BEHAVIOR

[Remove this Comment] Wednesday, February 27, 2008 7:09 AM by COFFEE CHAT & SPIRIT CAKE!

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

# PANDAS DISEASE, A HIDDEN REASON FOR YOUR CHILD'S BEHAVIOR (re-post)

[Remove this Comment] Wednesday, February 27, 2008 7:15 AM by COFFEE CHAT & SPIRIT CAKE!

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

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

[Remove this Comment] Thursday, February 28, 2008 11:30 AM by Billie
Elizabeth, I emailed you at Junemurray200@yahoo.com and it keeps coming back. Do I have the right address?  Thanks Billie

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

[Remove this Comment] Saturday, March 01, 2008 11:22 PM by Ms Claritynow
Junemurray2000@yahoo.com

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

[Remove this Comment] Monday, March 03, 2008 1:11 AM by June Murray
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.

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

[Remove this Comment] Friday, March 07, 2008 9:14 AM by Nancy Matera
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

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# re: PANDAS DISEASE AND YOUR CHILD'S BEHAVIOR (repeat popular blog)

Sunday, October 19, 2008 12:28 PM by Maura Heckmann
My 11yo son has PANDAS. It has been a nightmare but I finally feel like we are controlling it-- it is not controlling us anymore.
He is on prophylactic amoxicillin for the next year (at least).
He is scheduled for a tonsillectomy later this week.

My recommendation to parents--is listen to your gut. If you disagree with a diagnosis seek another-- you will always be the best advocate your child will have.  Rheumatology is much more on he money than the neurologist ever was.
My son is doing great!!! I would say he is 99% back to himself

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