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the boy who only hopped


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Yes, there were a lot of symptoms and details that were not in the book. I remember one, Sammy had said the reason he didn't want to sleep in his bed was because of the comforter...but he didn't/couldn't (I can't remember which one) tell him mom.

 

Also, there was a lot of indication that if not caught early enough, it would become permanent. Of course the show played it off as if Sammy got treatment just in time...I imagine a lot of PANDAS parents got really scared at that.

 

Overall, though, I was happy with the show.

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Well, I think the permanence is a real and logical fear. Especially depending on the severity of symptoms. My son stopped responding to plain old amoxicillian around 22 months of symptoms. (This was before I even knew about PANDAS). It took 2 years and 9 months of severe symptoms before a diagnosis of PANDAS. I guess I will know in about a year if it is permanent or not. If he is not better in a year, I highly doubt he will get better. I am not looking for sympathy. It just makes logical sense. Although his PANDAS doctor believes that he will recover. I will believe it when I see it.

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Well, I think the permanence is a real and logical fear. Especially depending on the severity of symptoms. My son stopped responding to plain old amoxicillian around 22 months of symptoms. (This was before I even knew about PANDAS). It took 2 years and 9 months of severe symptoms before a diagnosis of PANDAS. I guess I will know in about a year if it is permanent or not. If he is not better in a year, I highly doubt he will get better. I am not looking for sympathy. It just makes logical sense. Although his PANDAS doctor believes that he will recover. I will believe it when I see it.

 

I believe that it is a real and logical fear too...I just think they played it up as if it was a fact, when honestly, we don't really know. To have Dr. N state that it can be permanent...is playing that off to be a fact. Anecdotally, the children who do get treatment (even ones who were sicker for longer than Sammy and your son) have made full recoveries...the long-term studies are just not there to tell us either way.

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I was holding my breath while I watched that clip. This is my son!!!! We moved and he went berzerk. We assumed it was emotional. We got a psychiatrist. We thought it would get better. It got worse. He wanted all the lights on. He wouldn't sleep in his bed. He became incredibly defiant. OMGoodness - this is MY son!!! And here we are almost 4 years later...

 

Does anyone know if that program is available for purchase? I would really like to see the entire episode.

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Does anyone know if that program is available for purchase? I would really like to see the entire episode.

 

Yeah, I'd be curious too. It looks like Itunes only has older seasons. (and you have to buy the whole season for more $$, vs. just being able to buy 1 episode.)

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Does anyone know if that program is available for purchase? I would really like to see the entire episode.

 

Yeah, I'd be curious too. It looks like Itunes only has older seasons. (and you have to buy the whole season for more $$, vs. just being able to buy 1 episode.)

 

I would really like to see it also. I didn't know about it until a few weeks ago. I have been working with the school on my DD's 504 plan and one of the things we did was send a letter home to all the parents at the school about PANDAS and letting them know that there was a child in the school with this immune disorder asking them to call in if there child has strep and to seek treatment if they think it might be strep.

After that letter went home my sons kindergarten teacher came up to me and asked me about my dd and PANDAS. She said it was so weird because she had just like a month ago watched this show about PANDAS talking about this one of the clip here.

I would really love to see it see what she saw and see if it might be help for for my dd's teacher to watch also.

 

I was one of the luckier ones and we caught it sort of quickly. I did let it go over a year before I called in the doctor I was marking all her weirdness all the fears she was having about everything up as childhood stuff and her mood up to the fact that she had mono and just wasn't feeling good.. She never got nearly as bad as Sammy and didn't get the tics.

But We started dealing with this in Feb 2009 and was told PANDAS and started treatment in May 2010 She still will not sleep in her own room or in her bed, when she does go into her room to sleep(on an extreamly good day)She still uses a blanket on the floor.

I'm reading Saving Sammy right now and I can relate to so many thing. like how she while so much better then she was this past spring still has alot of mood issues and fears..

 

If anyone know if you can watch this full episode anywhere Let me know.

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My husband and I saw the rerun of the original on Mystery Diagnosis about 6 weeks ago on a Sun night. We turned to each other and said "This is what DS6 has". I began to pursue it immediately. I had DS in to his ped the next morning. Unfortunately, she did not run the titers and was very skeptical. I am waiting on the results of the labs ran a week ago, at the request of Dr T, which his ped had no problem running after seeing how different DS was last week vs 6 wks ago. He began an exacerbation and was ticcing for the very first time.

 

Our DS is not as bad as Sammy was but he has the occasional 'hop', in addition to many other symptoms.

 

Cindy

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