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Where did you first hear about PANDAS?


Where did you first hear about PANDAS?  

42 members have voted

  1. 1. I first heard about PANDAS from...

    • The internet (web search)
      22
    • My child's doctor
      13
    • A book
      2
    • A tv show
      0
    • A friend
      2
    • Other (please list below)
      3


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I'm just curious where everyone first heard about PANDAS. Was it via the internet, your doctor a book, a tv show, a friend?

 

Just curious how the info is getting to people and parents.

 

 

I first heard of PANDAS about ten years ago on the internet. Unfortunately out docs would not pursue it even though I sent them articles. :angry:

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a behavior therapist suggested it to us - she couldn't 'peg' him with a condition b/c he'd display some characteristic and then disprove it. he was 4.5 years old. he mainly presented with behavioral difficulties and separation anxiety - not classic OCD. she said "what you're describing sounds like OCD but he's awfully young - there is something known as PANDAS."

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I'm just curious where everyone first heard about PANDAS. Was it via the internet, your doctor a book, a tv show, a friend?

 

Just curious how the info is getting to people and parents.

 

 

I first heard of PANDAS about ten years ago on the internet. Unfortunately out docs would not pursue it even though I sent them articles. :angry:

 

Ditto! :angry:

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I put internet because that is where I found it when connecting it to my son. TOTALLY coincidentally when I was talking to my ped about something totally unrelated his response was "It's like Pandas... you can ask 100 great doctors and you can still get 100 different answers" Now I had no idea what he was talking about and didn't ask. Then a few months later when I started researching what was going on with my son up popped pandas. So the dr. mentioned it but not in regard to anything to do with my son or what I was in the office for... just in conversation. When I went to the doctors regarding things related to pandas not one of them suggested it might be that. It took my internet search to figure it out.

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I found it on the internet, specifically the ocd foundation web page around last April. My son had a bout with ocd when he was 5. He is now 9. Last Christmas I started to notice behavorial issues with my son...something was not right. He had been dxed with sensory intergration disorder, and was currently undergoing intensive 3 month vision therapy. So the behavior issues got blamed on the sensory issues and possibly the adjustment to the vision therapy and the improvement in his eyes (which worked wonders by the way). However, my instincts knew something else was going on. In April/May I noticed a tic I hadn't seen since his 6 week episode of ocd when he was 5. It was blamed on stress then, and the impending kindergarten. Last year, my son had been sicker than ever with constant sinusitis and sore throats, never positive for strep. He had scarlet fever when he was 2. On one visit in May I asked the doc treating him (not his regular pediatrician) about PANDAS. She said if is not affecting his daily activities there really wasn't much different to do than the normal treatment for ocd. I am afraid I tend to downplay my issues when I get with a doctor, but at the time it wasn't so bad. I ended up taking him back to the behavior therapist he saw when he was 5, because that is what we did then and I figured that is all he needed. Needless to say things got much worse, especially behavior, and we ended back at the doctors. We visited a chiropractic neurologist in July who offered several different therapies for kids having problems. On his exam, he felt like my son's ocd wasn't typical ocd and advised having him checked for PANDAS. The next day we were seeing his pediatrician and I mentioned it to her. She was very receptive and we did blood work. Unfortunately, my son's bloodwork has never shown anything so once again it was put off for a month or so. It wasn't until Beth Maloney and Sammy were on the Today show. I had been looking at all the PANDAS info again because ever since I read about it in April, I kept it in the back of my mind, but then my mom saw the interview. She called me and said this looks just like my son. Once I watched it online, I was convinced. We asked the pediatrician if the blood tests were conclusive. She said no and sent us to a pediatric neurologist. By Oct. we ended up with Dr. Latimer.

 

Interesting note: in August a cat "adopted us"...just decided this is where he was living. The sweetest cat and he just loves my son. He has come to sit in my son's lap during a tantrum and calm him down. The kids named him Sam. By Sept. Saving Sammy came in to our lives and saved us. I tell my son it is no coincidence that we saved Sam the cat, and then Sammy saved us.

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I'm just curious where everyone first heard about PANDAS. Was it via the internet, your doctor a book, a tv show, a friend?

 

Just curious how the info is getting to people and parents.

 

Hi Vickie,

I found out through my son's Pedi 6 years ago but it was never followed up correctly until now. His ASO titers were elevated two out the 3 times we checked over the past 6 years but I was told not high enough so it probably wasn't PANDAS--WRONG.

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Right here on the tics/tourettes forum. I joined in January of '07, but started reading a couple months before that. at the time, it was the tics/tourettes board and there were a couple of posters who were already on that road, so I read alot of their backposts from around 2004, and went from there. Actually it was the poster 'ad ccl' who posted here recently about how well her son was doing presently, her and another gal 'Ronna' were the pioneers of PANDAS and the source of anecdotal info on the board at that time.

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Hi Vicki,

 

I first heard of PANDAS when my son was inpatient a little over a year ago. The psychiatrist had never seen a kid like mine. He had a psychologist come in to do a psychological profile on my son. It was this psychologist that mentioned PANDAS. The psychiatrist ordered an ASO test and it came back at 400 (under 200 is normal). He felt it was interesting but inconclusive because it wasn't that high. He felt it warranted checking in the future if he had more trouble. I looked into PANDAS at the time and didn't think my kid had OCD - I was wrong! It is hard when they have intrusive thoughts that you can't see and they don't always verbalize I thought he would be washing his hands 100 times/day or something. Anyway, my son could not live here for about a year due do the danger to myself and our family. When we got him back this fall we heard and saw more homicidal stuff so on a whim I took him to get the titers checked out of desperation for a diagnosis. ASO was 400 again and Antidnase B was 1590! Went to Dr.K and finally have a dx and the help he has needed and did not recieve for 7 - 10 years! By the way the psychiatrist (after being the one that mentioned it in the first place) doesn't agree with the dx!

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We first learned from our Ped. Neurologist but when my dd's titers came back normal, he dismissed the possibility. Then I relied on internet searches and you wonderful parents to learn more and get our diagosis.

 

Susan

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How is your son doing now?

 

Also, I know the guilt one feels when they look back and realize they were able to find "excuses" for the behaviors. I did it too. well, it's because of his birthday. well, it's because he's just starting school and it's new. I'll give him one more week to snap out of it. You're not alone in that. Also, as for how one "acts" around the doctor, well, sometimes I get like that too. I don't know what it is. Sometimes, I'm very strong at the office, sometimes I'm a wall flower. Maybe it's that part of you that really wishes we could just have a doctor tell us what to do, tell us it will be okay, and have them actually be right.

 

 

 

I found it on the internet, specifically the ocd foundation web page around last April. My son had a bout with ocd when he was 5. He is now 9. Last Christmas I started to notice behavorial issues with my son...something was not right. He had been dxed with sensory intergration disorder, and was currently undergoing intensive 3 month vision therapy. So the behavior issues got blamed on the sensory issues and possibly the adjustment to the vision therapy and the improvement in his eyes (which worked wonders by the way). However, my instincts knew something else was going on. In April/May I noticed a tic I hadn't seen since his 6 week episode of ocd when he was 5. It was blamed on stress then, and the impending kindergarten. Last year, my son had been sicker than ever with constant sinusitis and sore throats, never positive for strep. He had scarlet fever when he was 2. On one visit in May I asked the doc treating him (not his regular pediatrician) about PANDAS. She said if is not affecting his daily activities there really wasn't much different to do than the normal treatment for ocd. I am afraid I tend to downplay my issues when I get with a doctor, but at the time it wasn't so bad. I ended up taking him back to the behavior therapist he saw when he was 5, because that is what we did then and I figured that is all he needed. Needless to say things got much worse, especially behavior, and we ended back at the doctors. We visited a chiropractic neurologist in July who offered several different therapies for kids having problems. On his exam, he felt like my son's ocd wasn't typical ocd and advised having him checked for PANDAS. The next day we were seeing his pediatrician and I mentioned it to her. She was very receptive and we did blood work. Unfortunately, my son's bloodwork has never shown anything so once again it was put off for a month or so. It wasn't until Beth Maloney and Sammy were on the Today show. I had been looking at all the PANDAS info again because ever since I read about it in April, I kept it in the back of my mind, but then my mom saw the interview. She called me and said this looks just like my son. Once I watched it online, I was convinced. We asked the pediatrician if the blood tests were conclusive. She said no and sent us to a pediatric neurologist. By Oct. we ended up with Dr. Latimer.

 

Interesting note: in August a cat "adopted us"...just decided this is where he was living. The sweetest cat and he just loves my son. He has come to sit in my son's lap during a tantrum and calm him down. The kids named him Sam. By Sept. Saving Sammy came in to our lives and saved us. I tell my son it is no coincidence that we saved Sam the cat, and then Sammy saved us.

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