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Cured of PANDAS


mrigsby

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Does anyone on here have a family member or know anyone personally that has been cured of PANDAS? The only person I have heard of that was cured of PANDAS was Beth Maloney's son. It would be nice to know that there are a lot more out there.

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There are plenty and Diana Pohlman hopes to put out an e-mail soon sighting more success to provide hope. Most recently, Diana visited with Dr. Latimer and while there a beautiful 17 year old girl stopped by her office to THANK her for treating her 10 years ago. She was off to college and fine. Her comment to Diana was 'you tell all those PANDAs kids not to worry they will be fine'!!!!

 

-Wendy

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I can post a couple of threads of people who are doing well for many years. I just can't bring myself to use the word "cured". I think these kids can be "cured" of each exacerbation (meaning they go back to their normal), but the overall autoimmune disorder goes more into a remission and may stay latent in the body. Meaning,the possibility (even if it becomes very minute) still lingers somewhere if the right equation of circumstances happens again.

 

So, sorry for the clause that it kind of a downer, but here's some threads I saved of some people who have done well for years...

 

 

http://www.latitudes.org/forums/index.php?...15&hl=swedo

 

http://www.latitudes.org/forums/index.php?...37281entry37281

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Does anyone on here have a family member or know anyone personally that has been cured of PANDAS? The only person I have heard of that was cured of PANDAS was Beth Maloney's son. It would be nice to know that there are a lot more out there.

 

Four yrs ago, the very week I found PANDAS during my nightly online symtpom cluster searches, my exhusband was talking to his 20'something neighbor who was asking how Gat was doing knowing how sick he was. She was standing with a friend about the same age. When my ex explained that I found what I was sure was it (PANDAS) the young girl with her became teary and explained that 10 yrs b4 she had been diagnosed with it. She told my ex about the ###### she and her parents went through and by then all three of them standing there were in tears. He said that although he was almost afraid to ask, he felt he had to and said, "What is your life like now?" Then she really cried hard and said, "Tell her and your son that my life is beautiful now." She went on to say that she recovered fully, her parents recovered fully and they all lived happily with it just being a memory. He never saw her again but learned that her name was Colleen. I have used that conversation as my anchor on more than one occasion and refer to her as The Angel, Colleen because that was surely an act of Providence to stumble onto her in our one horse town.

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When my daughter was diagnosed with pandas, I reached out to my neighborhood via our community listserv. I had several emails and phone conversations with a mom in the area, whose daughter was diagnosed with pandas, and was in Swedo's initial study. Her daughter rec'd plasma pheresis at the NIH. She remained on antibiotics until she was through puberty (actually all of the 4 kids in the family remained on prophylaxis until then), and from what her mother said- she never relapsed and had a wonderful childhood.

 

I hold on to this story- since I heard it directly from the family.

 

Sigh.

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I say hold onto those stories and expect nothing less then 100%.

 

Our son was exposed to strep again on Monday in his class at school....... 'a resilient strain' as I've been communicating with the mother via e-mail and her daughter has white spots/puss on the back of her throat. Monday after school Corsa was a different child and I saw stuff I had not seen since sudden on-set. It put the fear of PANDAS into me, I cried on the phone to my brother, I e-mailed Dr. K, I e-mailed his teacher, I was communicating with the class, Corsa was pulled from school until after winter break, etc. It turns out Corsa was a great barometer for the class, his friend came down with a fever on Tuesday and diagnosed on Wednesday with strep throat. AND, it looks like everything we have done: IVIG and antibiotics helped pull him through as he appears back to his baseline within 48 hours..... call it what you like, a flair, a blip, 'flipping of the pages'!!! All I can say is I have CONFIDENCE that the treatment method is working. It hasn't been an easy recovery and our son has had more IVIG treatments than originally expected but we anticipate a full recovery. Once all my children are better, I think I'll need to heal too.

 

-Wendy

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Do you suspect she was exposed to strep? Corsa has been exposed to the flu and colds, not gotten sick and not reacted physically.

 

I'm not sure each 'flipping of the pages' so to speak isn't them processing some type of exposure to strep. BUT, for as much as I dislike these exposures we also want him to proceed with his class normally. Thankfully, these episodes are only hard on his PARENTS.

 

-Wendy

 

Wendy- My dd Julia has had the exact same experience about 3 times since we started with pandas.
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Three times, I would pick Julia up at school- she would look tired. She would have an uncharacteristically irritable afternoon, be resistant to school work, and the next morning have some difficutly separating and going to school. This may last 1 to 3 days. Finally I would get an email from a mom in her class that a child had strep. Julia would literally be better the next day. It would be clear something was going on with her- but NO WHERE near the level of an exacerbation.

 

I did pull her out of school for strep in the class once- because she was really feeling out of sorts. It really seems to tire her out, more than anything.

 

She seems to be fine if exposed to colds/flus etc. She did relapse when she HAD the flu (probable H1N1)- this was a serious relapse, and we brought it under control with steroids.

 

I do think- but am not definate yet- that her reaction to others with strep is calming down. Will keep you posted!

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I was tellinga friend of our family about PANDAS and I listed some of the symptoms of it. She told me that when she was a young teen, she had urinary frequency (friend teased her that seh had a small bladder), a facial tic, and extremely high anxiety. She said shen she turned about 19 years old all those symptoms just went away. She also prefaced all that with the fact that she had strep as a kid a LOT.

 

Sounds to me like a PANDAS case that resolved on its own. I still really wonder how many cases of OCD and tic disorders are related to an infection. I'd wager its a high percentage.

 

Angela

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Its comforting to hear your story and know Julia is getting stronger. I think it just takes time to heal their bodies and rid them of ALL those bad cross reactive antibodies. Corsa is also been very tired and we are focused on him getting plenty of sleep while off from school.

 

As for our twins. They are essentially homebound, they are taking daily antibiotics, boosting immune system with high dose probiotics, fish oil, b12 and retesting them in 3 months (ASO, Anti-DNAse-B, CBC panel and CaM Kinase). I am hopeful without re-exposures we can slowly recover their immune systems. Because they are young, I'm praying the antibiotics alone will help them recover and IVIG will not be necessary. Thankfully, we've caught it early and they will never remember being house bound when they are 20.

 

How is your other daughter doing?

 

-Wendy

 

 

 

Three times, I would pick Julia up at school- she would look tired. She would have an uncharacteristically irritable afternoon, be resistant to school work, and the next morning have some difficutly separating and going to school. This may last 1 to 3 days. Finally I would get an email from a mom in her class that a child had strep. Julia would literally be better the next day. It would be clear something was going on with her- but NO WHERE near the level of an exacerbation.

 

I did pull her out of school for strep in the class once- because she was really feeling out of sorts. It really seems to tire her out, more than anything.

 

She seems to be fine if exposed to colds/flus etc. She did relapse when she HAD the flu (probable H1N1)- this was a serious relapse, and we brought it under control with steroids.

 

I do think- but am not definate yet- that her reaction to others with strep is calming down. Will keep you posted!

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Several months ago, when we were first going down this PANDAS route, we had to pull our DS12 out of his private music lessons (viola), his exacerbation and behaviors were so bad. His strings teacher is a registered music therapist, so she is more atuned than many when it comes to a kid's mental and emotional make-up.

 

Anyway, I guess shortly after we'd canceled his lessons, she was relating his story, anonymously, to another parent who's son also studies with her. This parent -- I'll call her Mary -- gasped when she heard about DS12's symptoms and behavior and replied that her older son had gone through something similar about one year ago, it had been diagnosed as PANDAS, and he'd been 100% cured by antibiotics. The teacher asked if she could pass Mary's contact information on to me so that I might touch base with her.

 

So, a few days later, I called Mary and we talked for nearly an hour. Sure enough, her 12-year-old son had gotten sick and she took him to the pediatrician. He was tested for strep and it came back positive, so he was given a course of penicillin. A few weeks later, after the prescription was completed and the strep supposedly gone, she took her son back to the ped because he was "acting weird." His behaviors were almost entirely OCD-related. The pediatrician initially said, "Well, he's been sick. All kids act weird when they're sick." But then Mary described some of the really odd behaviors that had cropped up and the ped scratched his head. They both did some research and came across PANDAS. Then the pediatrician actually called Swedlo and talked to her about it.

 

Long story short, this boy was given Penicillin, first in high doses and then in increasingly lower doses, over a period of about one year. He was never given any psychiatric meds, though they did enroll him in CBT for the year, as well. He has been off all medications -- including antibiotics -- and enrolled in his regular school for the last 12+ months. No PANDAS at all.

 

Sounds like another case of "cured" to me!

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