PANDAS article

[philamom]

Researchers find rare new disorder in children

 

 

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Researchers find rare new disorder in children

Video updated on: 2011.09.04 at 09:58 AM EDT

 

Story posted 2011.09.04 at 09:30 AM EDT

 

 

 

Dante Falcone was a happy, social child but his mother says around the time he was four, he changed seemingly overnight.

 

 

"All of a sudden he would sit in the corner or he would crawl under a table and he wouldn't come out," said Severn Falcone.

 

Dante also began obsessively washing his hands.

 

"When you looked at his hands they were almost bloody, they were so raw from being washed," said Falcone's mother.

 

It got worse to the point where he became suicidal. That's when his mother took him to numerous doctors.

 

Shortly thereafter, Dante was diagnosed with PANDAS. It stands for Pediatric autoimmune neuropsychiatrc disorders associated with streptococcal infections.

 

Dante had a strep infection just before his symptoms started.

 

Researchers like Dr. Josephine Elia say the theory behind PANDAS is that the antibodies formed to fight strep mistakenly interact with brain chemicals, causing obsessive compulsive behavior, anxiety, ticks and other problems.

 

This rare diagnosis is controversial as it has not been fully proven.

 

"We're still at the very preliminary stages of understanding this condition but does it exist? Without a question," said Dr. Elia from the Children's Hospital of Philadelphia.

 

Dr. Elia says it may not just be strep but other bacteria that can also spark the disorder.

 

Dante, now a teenager, was treated with both antibiotics and behavioral therapy as a child and has fully recovered.

 

He still takes antibiotics to ward off future infections, which is also considered controversial.

 

Taking antibiotics long term can lead to resistance, but pediatrician Dr. Hal Gordon sympathizes with parents.

 

"Once you see the symptoms, the effect it has on your child and the pain they are in, you want to do everything you can to prevent that from happening again," said Gordon.

 

Dante's mom does worry about him being on long-term antibiotics but she also says the treatment gave her son his life back.

 

"It was almost like day and night," said Falcone.

 

Doctors say, another problem is that not all physicians are aware of the disorder.

 

Dr. Elias says research has prompted new treatments but much more work is needed to make it a recognized disorder and have set out guidelines.

 

 

 

 

 

Story posted 2011.09.04 at 09:30 AM EDT

 

 

 

 

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All material © 2011 WPVI-TV, Inc. & 2004-2011 LSN, Inc. All Rights Reserved

 

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[JAG10]

Hey Melinda!

 

Saw the video yesterday. What struck me most was the dyed hair! Wow! She looks 20 years younger!

 

You know, 18 months ago when my dd was seeing Dr K, we discussed with him our experience and frustration with CHOP. I remember what he said clearly...."changing the direction of major children's institution is like turning ocean liner. They are changing direction but very, very slowly. Too slow to help your daughter."

 

But I'm very pleased for all the younger children in our area.

 

Jill

[philamom]

Hi Jill!

 

I haven't watched the video yet - will need to check out the new look.

 

When we were there 2+ years ago, we received the same line "still at the very preliminary stages". I too feel very hopeful for the younger children in our area, but sure wished I would have done a few things differently since our appointment.

 

Melinda

[JAG10]

Hi Jill!

 

I haven't watched the video yet - will need to check out the new look.

 

When we were there 2+ years ago, we received the same line "still at the very preliminary stages". I too feel very hopeful for the younger children in our area, but sure wished I would have done a few things differently since our appointment.

 

Melinda

 

We saw Dr Elia in October, 2009. Determined pandas by December, 09. Phone consult with Dr K in March, 2010 with IVIG in May, 2010. At that time, Dr K had a waiting list and encouraged us to contact Dr Elia to obtain ivig locally through her. When we did not receive any response, we contacted Dr K again and scheduled our trip.

 

This is great news for children with recent or initial onset. Those of us with children who, for whatever reason, went un- or misdiagnosed and years went by, will have to continue to work the problem until the symptoms vanish.

[philamom]

Hey Jill - Are you aware of anyone locally using this pediatrician (Dr. Gordon) for PANDAS?

[PhillyPA]

I would encourage anyone in the Philadelphia area to give CHOP another try. The tide has changed and they are much more open to PANDAS and auto-immune disorders.

[beeskneesmommy]

We go to CHOP and it was a great start to get immediate help and info for our son when he had his acute episode l year ago. Dr. Elia is an amazing, compassionate person who helped us a lot, and we continue to see her and to share info. She is not wrapped up in ego, as some of the specialists are, and she is interested in hearing about other docs ideas and new information re: PANDAS. We see Dr. B as well, who has had the ability to give us more aggressive labwork and abx treatment. We intend to share our new info with Dr. Elia and we expect that she will be interested and open to it. I would also encourage parents to seek help at CHOP. Keep in mind that the best way that we have found for our son's treatment has been to gather a team of docs and several different info sources, as treatment for PANDAS is still in the pioneering stages.

[philamom]

I'm glad to hear the tide is changing. I took my daughter to CHOP (neurology) in 2006 & 2009 and to Dr. E in 2009. One Neurologist and Dr. E diagnosed PANDAS. Didn't get anywhere. In June 2009, we paid out of pocket for IVIG in Chicago. The only blood test that was done on my daughter in those three years was a D-nase test. It wasn't until we saw an Immunologist in Nov 2009 that labs were drawn and some deficiency's discovered. And then in July 2010 we unraveled lyme, bart, and rmsf.