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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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Vickie, Thank you for asking!! Sorry haven't responded sooner! Been crazy lately, full-blown PANDAS and husband with a kidney stone. Fun! My son is waxing and waning. Back in October we saw Dr. Latimer, and she placed him on steroids and antibiotics. He had his tonsils out at Thanksgiving, per Dr. Latimer, and I do feel that helped. We had relief in some areas. There was a lapse in antibiotics for a few weeks, but he is now back on them. He has been one Augmentin 500mg 2x/day, Prozac 20mg for about 3 weeks. Was doing better, except for the occasional tantrums, and compulsions were manageable for both of us. A few days before Christmas he got sick. Two days later the compulsions got worse, and hasn't stopped washing his hands since. His little hands are so chapped. On Christmas Eve he was in the shower at 11:30 p.m. because he was feeling sticky from candy canes he ate one week before at school. Ugh!! I'm sure a lot of this has to do with irregular routine, can't wait for school. He pulls it together for school, at least right now. We see Dr. Latimer next week.

 

 

 

 

 

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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From a friend at work who knows my DS. She'd been hearing about what was going on and asking all along how he was doing. I also thought it was a lot to do with starting first grade at a new school. We'd done private Kindergarten and I was thinking that was a BIG mistake. All of a sudden, she looked at me and said - "OMG you have to look up PANDAS". She has a relative who has a DS with it. I went right to my computer and looked and it was a real OMG moment! I was very very lucky from there with a pediatrician who listened and did research herself and an immunologist who reckognized it at our yearly standing appointment which was a few weeks later.

 

Also, at the time, I was venting, asking for help at an online group and someone there directed me here. All the confirmation I needed.

 

I consider myself, and my DS, SOOO lucky to find an answer so very quickly!

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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.

Feb. 2006

Approx. 2 days after postitive strep test.

Took my son to Ped. "Something is seriously wrong with my child, he woke up a completely different kid." He had SEVERE symptoms.

Ped. noticed immediately when we walked in the room. She wrote down symptoms, came back 30 minutes later, "You are not going to believe this," and handed me info. from NIMH. She had never heard or seen anything like this before.

He had every single symptom on the NIMH list except tics (these started just a few days later).

 

Only months later, a representative from an antibiotic company came to the ped. office to distribute samples and spoke to them about PANDAS, calling it the "new rheumatic fever". Kind of Weird, ha?

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I spent 5 years as a single mom going from dr to dr with Pixie and no one would hear me. They said I was a new, young mom and she was fine and they would laugh at me. Then I got internet and researched symptoms and figured out to take food dyes out of her diet. That seemed to improve her for a short time, and then new symptoms would come. We ran tests and the dr would give up and say "dunno" and that was that. Dr after dr. Then when the mania got terrible, the aggression was in full swing... all of the symptoms were coming out at once and even an outpatient psych hospital stay wouldn't help, and psych meds weren't helping/making things worse, we spent 2 years online- every day, for HOURS on end, I would type in combos of her symptoms into search engines and come up with more blood tests we could run, diets we could try, but then hit a brick wall. Finally after lots of severe aggression and my own health beginning to suffer with caring for her and having a big sob-fest on the phone one morning with DH while he was at work, he typed in some magical combination of OCD, sore throat, fever or something... and up popped this very forum. We lurked for a few months and debated whether it was really PANDAS and what that all meant, until we hit a breaking point and it was either go to Dr K or find inpatient care for her. We got IVIG and prophylactic abx and have been steadily improving ever since. :D

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My son was being seen by a psychologist for auditory processing issues, a speech tharapist and an occupational therapist to help help with some processing issues.... when he had his sudden onset of OCD behaviors I contacted the center... spoke with all 3 specialists... his psychologist said get tested for strep and explained PANDAS to us.... our search for help hasn't stopped since

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we sat in the conference room at NBC studios, the same evening that we appeared on the Today show. Dr. Nancy Snyderman met with us to see what she could do to help. She really felt that this was either tourettes that we we experiencing or "PANDAS". She was the first person to mum the word to us. We them proceeded to phone conference with Dr. Nicolades and Dr. Leckman that evening. It was surreal. We spent hours there discussing/talking to different doctors. We ordered in pizza & salads. If you were standing outside Radio City Music Hall at 8:30 pm that eve looking up at NBC studios you would have seen one little light on, coming from that conference room as mist everyone had left for the day (except Brian Williams)! Nancy, and her staff, went out of her way to help our family that evening and continues to do so... Her staff said she has never done that before for anyone. We cannot thank them all enough. They call or text us everyday to see how we are doing, they continue to help and support us. We are most greatful that we are part of the "today show family". The rest is history in the making...

 

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.

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I first heard of it in 2003, from our pediatric psychiatrist who had been to a conference and heard Susan Swedo talk. He told me it was the most clear cut case he'd ever seen. His diagnosis led to our aggressive treatment of strep at the time with Clyndamycin and tonsilectomy with support from our pediatrician. My son did recover immensely, but when future OCD problems crept up again, strep tests were always negative. I began to think the connection wasn't really there at all. Then when he caught strep again in 2007, and things got better quickly after anitbiotics I thought that was it. That what you do with PANDAS is just treat for a regular strep infection and that's that. So when he had a his worst exacerbation a few months later I didn't connect the dots. I was quite sick myself at the time on my own medical oddysey and didn't have the strength or energy to do anything other than follow the lead of the doctors treating him. And I had read that true PANDAS kids outgrew it in puberty, so I figured it was either too late or it just wasn't PANDAS. Another severe exacerbation arose this fall in conjuction with a sinus infection the same week that "Saving Sammy" was released. I read it in 24 hours and emailed Beth with tears in my eyes. I have to say she inspired me to move ###### or high water and trust my instincts, and that I wouldn't find the answers at all unless I got agressive. And then I rediscovered this forum and have been overwhelmed by the support of all of you. !

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