ABC News Primetime tonight

[EAMom]

HI mommd...

I think it would be epecially great if you would be willing to be on the show b/c 1) your son is a treatment success story after dramatic symptoms 2) you are an MD so it is unlikely you would just be perceived as another "neurotic parent".

[NancyD]

I agree. I think this would make a great story. Mom MD, how old is your child? Perhaps we can talk in a couple of weeks after my daughter goes back to school?

 

Nancy

 

HI mommd...

I think it would be epecially great if you would be willing to be on the show b/c 1) your son is a treatment success story after dramatic symptoms 2) you are an MD so it is unlikely you would just be perceived as another "neurotic parent".

[NancyD]

Kayanne,

 

Can you tell me in a brief paragraph about your child? Suzan too. Please include age of child. Thanks.

 

Nancy

 

I'm interesed in helping....I have corresponded by email with "suzan" and she is also interested.

 

What we can do is approach a couple of producers to see if they would be interested in doing a piece on PANDAS. If they are interested, I'm sure they would want to show a couple of families with success stories and a couple of families still strugging (and have dramatic stories to tell). The kids should range in age.

 

Anyone else interested in particpating?

 

Nancy

 

Wow Nancy. wouldn't that be great! I just would like them to show the day to day issues PANDAS kids face. Not exagerated to get viewers just realistic. The medical journey and trying to find Dr's hat will help, the compulsive behaviors and emotional troubles, the meds issues and getting schools to recognize the disorder. Great exposure.

[mom md]

Carter is 8 now and was diagnosed at 7 1/2. Looking back it is unclear when his symtoms really began but maybe 2-2/12 years ago...maybe even 3-4. His story is a little different because there is no "magic" date on the calendar but a slow wax and waning of symptoms that progressively got worse over time. We had two rounds of Augmentin and steroids last year for "sinusitis" and all the other behavioral and other symptoms got better. Looking back we were treating pandas but did not know it. His more severe symptoms did not begin till this fall and then true chorea and really bad symptoms in January. Also looking back he had night sweats, migratory joint pain, rash, etc. With every symptoms we always had an explaination until the tics and chorea began. We thought he had restless leg symdrome and just moved all night long and that was why he was anxious, moody, had poor impulse control, etc...we juast thought he was not getting any sleep. He failed every treatment we gave him and then started noticing the "classic" signs of anxiety, OCD, tics, echolalia, muscle weakness, dysarthria, and finally chorea. You feel really dumb as a physician to not have seen it and diagnosed it but when he was diagnosed I thought "how can my kid have something I have never heard of and was never taught in medical school?". I did not believe it and kept seeking second, third, and even fourth opinions. Everyone we saw agreed it was PANDAS. I remember reading the symptoms and thinking that wow, this would explain everything. Now that we have completed PEX every day I notice little things that he no longer does that he did before. They best way to describe him now is normal.

Just a little brief example of life after PEX which we did 4 weeks ago. My mother and father in law have a vacation home in the Bahamas and my son refused to go last year. He could not tolerate flying over the ocean and was crippled with fear so we did not go. We are at the beach now with my parents in Florida and two days ago my son asked my father to take him flying in his little plane. This is a TINY four seater plane. My father flew him over Amelia Island and low over the ocean. Carter sat in the front seat and loved it. He wanted to do it again the next day. I am shocked!!!!! My parents can also see a hugh difference. I still see minor traces at times as the brain is healing but they are so fleeting I am wondering if sometimes I am imagining them even.

[Suzan]

Now that we have completed PEX every day I notice little things that he no longer does that he did before. They best way to describe him now is normal.

Just a little brief example of life after PEX which we did 4 weeks ago. My mother and father in law have a vacation home in the Bahamas and my son refused to go last year. He could not tolerate flying over the ocean and was crippled with fear so we did not go. We are at the beach now with my parents in Florida and two days ago my son asked my father to take him flying in his little plane. This is a TINY four seater plane. My father flew him over Amelia Island and low over the ocean. Carter sat in the front seat and loved it. He wanted to do it again the next day. I am shocked!!!!! My parents can also see a hugh difference. I still see minor traces at times as the brain is healing but they are so fleeting I am wondering if sometimes I am imagining them even.

 

WOW! Super Great!

[Suzan]

Kayanne,

 

Can you tell me in a brief paragraph about your child? Suzan too. Please include age of child. Thanks.

 

Nancy

 

I guess it's going to be hard to be brief but I will try. We have a lot going on right now and I'm feeling very overwhelmed. But I would like more research to be done and more help, knowledge and understanding so this is why I am interested in helping if I can.

 

dd age 7

 

She had her first strep infection at age 16 months. After that, she started doing strange things like sticking her hand down her throat until she gagged and would laugh crazily, pull out her hair and laugh. Then over the next years, she developed sensory integration disorder, didn't want to be touched, horrible temper tantrums, AHDH, separation anxiety, fears, worry, sensitivity to sound, bedwetting, pain in her legs, feet, hands, general malaise. History of ear, sinus and chest infections, tonsils and adenoids out, ear tubes.

 

First obvious PANDAS episode was in January of this year where she went a little crazy in class and was mocking the teacher, pulling things off of shelves, refusing to obey, laughing. This was when we found out she had strep and the start of learning about PANDAS.

 

dd age 6

 

She had her first strep infection around 12 months. She has a history of ear and sinus infections, ear tubes at age 2. Very impulsive, couldn't sit still, inappropriate touching of others, clingy, needy, separation anxiety, picky eater, age regression, worry about death, fears, trouble sleeping, food restriction, loss of taste buds, hand writing deterioration. She was so small and light that I was very worried about her by now. She had V. strep 4 times in a 5 month period. Our Ped neurologist suggested PANDAS but due to normal antibodies, thought maybe some other type of neurological autoimmune condition.

 

Both have waxing and waning symptoms and they present themselves in very different ways. They are now on antibiotic treatment and improving but still struggling. DD6 seems to be doing better than dd7 right now but it's a moving target.

 

Susan

[EAMom]

Hi MomMD (and all)....I think your son's "not overnight" change that is pretty typical of a lot of PANDAS kids...to have "low grade" symptoms that could be easily mistaken for other things such as ADHD, parenting, temperment, "phases a kids goes through", external stresses...and then something happens to upset the delicate balance and the Pandas becomes "full blown". Certainly are some kids that have the "sudden overnight" change (that Swedo talks about) and those are likely more easily diagnosed as PANDAS. Others are more gradual (in varying degrees, months or years).

 

Even with my dd's bad PANDAS episode it was not 100% overnight...but rather ramped up over a 2 mo. period. She had a 3 day fever (likely strep we find out later) Jan 08 (interestingly, she had a public temper tantrum that another parent described as "very out of character" 1/2 hour b-4 I realized she had a fever). For the next 2 mo. her behavior changed (emotional lability, tantrums, OCD behavior which we didn't realize was ocd b/c it presented mainly as irrational bossiness and defiance) but was mistaken by me (as a parent, who knew nothing of PANDAS) to be the result of stress (dh was traveling a lot, dd was upset about having to go to speech therapy, etc.), poor parenting (not being firm enough etc.), and my dd just becoming more "difficult". Her symptoms worsened after 2 tooth extractions (for orthodontic reasons). After her 2nd extraction, dd was suicidal, had full blown anorexia nervosa (resulting in a 6 day hospital stay for malnutrition), dropped from almost 50 pounds to 42 pounds in a 2 week period (would only eat 1 small meal a day), had severe OCD (severe enough for the folks at the eating disorder clinic to suggest an inpatient treatment program for OCD might be appropriate); plus tics and other abnormal movements. So, her change wasn't exactly over night...but she was truly a different child from the one we had 2 mo. previously. We finally learned about PANDAS in March (just before admitting dd to the hospital). After calling about 20 psychiatrists trying to find one who was qualified to treat a 7-year-old with anorexia nervosa...psychiatrist #21(eating disorder specialist formerly with Stanford) recommended we test her for strep... confused, we googled "strep" and "anorexia nervosa" and learned of PANDAS for the first time.

 

In hindsight we realize dd had episodes...urinary frequency, periods of ocdish handwashing, emotional lability, phases of sensory issues (where all the tags had to be cut off) that were likely undiagnosed "mild" pandas off and on for years.

[Kayanne]

Nancy,

 

I have a very difficult time being brief...but here goes...

 

DD6 had several strep infections...first one on March 11. Prior to that she was a healthy child.

 

Sometime around the end of May/beginning of April, we noticed an inablitiy to make decisions, telling on herself, crying a lot...basically anxiety. We were getting frustrated with her. We did not see an overnight onset.

 

The red flags were raised when her Kindergarden teacher approached me on April 21 and said that since she returned from Easter Break (April 14), she has been different. Her descriptions were the same of what we were experiencing at home, and in addition she said that she wasn't talking or playing, and she couldn't seem to do her work without being told it was okay. Prior to this she was thriving in school.

 

On May 1, we met with her pediatrician, and he believed it was anxiety/possible OCD...told us to set her up with counseling. However, he also said that sometimes strep infections are linked to OCD and tics. He ordered blood work including ASO and Anti-Dnase titers.

 

When the titers came back high, his office set us up to see a specialist at Children's Hospital of Philadelphia. We saw that specialist on May 22....complete waste of our time! He said that he couldn't say yes or no to PANDAS because she hasn't yet had a waxing and waning pattern that is linked to strep, and it didn't matter anyway because there really wasn't anything that he could do...IVIG and plasmaphersis were risky and expensive, and antibiotics don't work, and it isn't clear if SSRI's work either because by the time they kick in....symptoms should be waning anyway; However he said that our next step should be to see a pediatric psych.

 

That weekend I found this forum...posted...got awesome advice...took my daughter to Dr. Latimer on June 5th. At that time she seemed worse.

 

Dr. Latimer prescribed prednisone for one month, and about 3 months of azith. She ended up taking the prednisone for six weeks...she is still on the azith.

 

She is probably at 99.5% recovered. We just have a very low level of anxiety...

 

Our case is not really dramatic...in fact I think it is a mild case that could just illustrate the wide spectrum of this disease...the two things that I find scary about our case is if my daughter's doctor hadn't heard of PANDAS, we would be treating this as a case of anxiety/OCD because we have a family history of it. SSRI's for a 6 yr old scare me, but with how bad she was, I would have put her on meds if the doctor's felt it would help. Secondly, she withdrew so much and her verbal skills and writing just plummetted that in the end it felt like autism...everybody kept telling me that she is too old to develop it. But now I keep thinking that if she were 3 or 4 years younger, and having her first strep infection would I have been told that it is Autism?

 

Not really sure about actually putiting my daughter on TV, but I'm willing to help in other ways too....maybe helping put together a press packet if you think we need one. One suggestion that I had made in a regular email to a groug of PANDAS parents is maybe do a group of organized emails. First a more lengthy general email with a case history, and then maybe a few brief emails sent from other parents each day for a few days...all with the same subject line...I think it would be hard for a producer to miss that.

 

Thanks a lot!

~Karen

 

Kayanne,

 

Can you tell me in a brief paragraph about your child? Suzan too. Please include age of child. Thanks.

 

Nancy

 

I'm interesed in helping....I have corresponded by email with "suzan" and she is also interested.

 

What we can do is approach a couple of producers to see if they would be interested in doing a piece on PANDAS. If they are interested, I'm sure they would want to show a couple of families with success stories and a couple of families still strugging (and have dramatic stories to tell). The kids should range in age.

 

Anyone else interested in particpating?

 

Nancy

 

Wow Nancy. wouldn't that be great! I just would like them to show the day to day issues PANDAS kids face. Not exagerated to get viewers just realistic. The medical journey and trying to find Dr's hat will help, the compulsive behaviors and emotional troubles, the meds issues and getting schools to recognize the disorder. Great exposure.

[thereishope]

I have a contact for, I believe, 19 year old girl who has PANDAS. She never did IVIG. She is doing well now. She has been in a case study, not sure which one, and wrote a story about her OCD for the OC Foundation. If you are interested in contacting her, I will send you her info in a message. Just let me know. She is very opening talking about it and wants to find others who have PANDAS.

[NancyD]

I'd love to talk with her, Vickie. Thanks!

 

Nancy

 

I have a contact for, I believe, 19 year old girl who has PANDAS. She never did IVIG. She is doing well now. She has been in a case study, not sure which one, and wrote a story about her OCD for the OC Foundation. If you are interested in contacting her, I will send you her info in a message. Just let me know. She is very opening talking about it and wants to find others who have PANDAS.

[NancyD]

I just received an email from Beth Maloney, author of Saving Sammy. As a result of her book, Dr. Nancy Synderman, medical editor for Today Show, is going to do a segment on PANDAS. She is going to be interviewed as part of the segment. It's happening on Thursday, September 24th. Way to go, Beth!

 

Also, she says: "The sale date for the book was pushed back to September 22nd (from September 8th) to coincide with The Today Show appearance. And Random House lined up a co-promotion with Barnes & Noble to feature the book on display. The first trade review came in (from Booklist) a few days ago, and the closing line is: 'This stirring account of a mother's determination and a boy's astonishing bravery makes you want to stand up and cheer.'"

 

Congratulations to Beth!

 

Nancy

[thereishope]

That's awesome! So which day should we make "PANDAS Awareness Day"?

 

 

 

 

 

I just received an email from Beth Maloney, author of Saving Sammy. As a result of her book, Dr. Nancy Synderman, medical editor for Today Show, is going to do a segment on PANDAS. She is going to be interviewed as part of the segment. It's happening on Thursday, September 24th. Way to go, Beth!

 

Also, she says: "The sale date for the book was pushed back to September 22nd (from September 8th) to coincide with The Today Show appearance. And Random House lined up a co-promotion with Barnes & Noble to feature the book on display. The first trade review came in (from Booklist) a few days ago, and the closing line is: 'This stirring account of a mother's determination and a boy's astonishing bravery makes you want to stand up and cheer.'"

 

Congratulations to Beth!

 

Nancy

[dcmom]

That is awesome! I have been anxiously awaiting my copy of Saving Sammy, which I pre ordered from Amazon.

 

Hopefully, the word will get out, and pediatricians will be less resistant to prescribing antibiotics, and exploring pandas as a diagnosis for some kids. The wasted time spent dealing with resistant doctors is unbearable, and, I think, makes it harder to treat our kids.

 

My only concern: I think that Beth's son was "cured" by a year or more of high doses of antibiotics (amoxicillan, I think). I am not sure if there was any more medical intervention involved, possibly puberty was a factor. I am just hoping this doesn't paint a picture that this is an easy fix with antibiotics. For some kids, maybe it is, and for some I think it is not. I just think I would like to see some info out there about IVIG and PEX, and how these procedures also cure kids.

 

But all in all, ANY publicity would be great- especially for those yet to be diagnosed...

 

If anyone thinks of it- post a reminder to watch the show a day or two before...

[thereishope]

Nancy, by any odd chance do you know where the reporter will be getting her info from? Did Beth inquire what the segment would contain? You said the book was only part of the segment. Would you suggest families contacting the network and express the need for various forms of treatment, symptoms, etc to be touched base on?

 

Personally, I think it will bring more attention to the disorder, but I don't think it would be an overnight revealtion of what these kids need. I still see a long struggle ahead...But it is a start.

[michele]

Great news on the PANDAS exposure on national TV. I agree I hope it doesn't paint that there is a quick fix from antibiotics. (I don't think antibiotics alone would cure the PANDAS. That is not a realistic outcome. However I haven't read the book and maybe the use of antibiotics in super high doses is what fixed Sammy. Even Dr. Latimore spoke to that concern about these web boards at our appointment, she doesn't want the word out to be that antibiotics will correct anything because it is antibodies not actual strep that is the problem. She said she felt there would be a backlash after Cunningham's studies come out and the naysayers will despute. I will be interesting. I still say we need a national organization. Anyone here with a law background?

 

That is awesome! I have been anxiously awaiting my copy of Saving Sammy, which I pre ordered from Amazon.

 

Hopefully, the word will get out, and pediatricians will be less resistant to prescribing antibiotics, and exploring pandas as a diagnosis for some kids. The wasted time spent dealing with resistant doctors is unbearable, and, I think, makes it harder to treat our kids.

 

My only concern: I think that Beth's son was "cured" by a year or more of high doses of antibiotics (amoxicillan, I think). I am not sure if there was any more medical intervention involved, possibly puberty was a factor. I am just hoping this doesn't paint a picture that this is an easy fix with antibiotics. For some kids, maybe it is, and for some I think it is not. I just think I would like to see some info out there about IVIG and PEX, and how these procedures also cure kids.

 

But all in all, ANY publicity would be great- especially for those yet to be diagnosed...

 

If anyone thinks of it- post a reminder to watch the show a day or two before...