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What confirmed the PANDAS diagnosis for you?


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I mean as a parent before DRS and Blood tests... I guess I mean when you 1st started the journey?

 

Our Journey started last April when I noticed that my daughter would roll her eyes involuntarily and she had rapid blinking. This started overnight and she had not shown this before. This has lasted in some form or another till her last 10 days on Amoxycillian for Strep. I haven't seen her roll her eyes or dilate her pupils in 2 days. She also developed a motor tic of humming. Very low sounding and that has decreased a ton but I will say she still has it. We also had a short period in Sept when when she had decreases the tics a ton after 4 weeks on Zithromax for a Sinus Infection.

 

Other symptoms that have reared their ugly head just recently are emotional Liability and Separation Anxiety. Lots of worried thoughts. And another bout of strep 2 weeks ago. SO we are seeing more symptoms with each infection...

 

I guess I sometimes can't wrap my head around this. I mean at birth she was born with a CHD and now the possibility of this! I think we will go to VEGAS when she turns 21...

 

We do go Thursday to a PANDAS specialist... I know he will order bloodwork and we have a ton of paperwork to go over. They told me to expect 2-4 hours. Keep us in your thoughts and prayers...

 

 

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to answer you question:

1) I suspeceted PANDAS because no other explanation fit.

2) our kids were too young for mental ilness.

3) there was no history of it in either family, but a lot of auto-immune issues on both sides.

4) change of symptoms.

5) their abrupt appearance and disapparence.

then, yes, blood tests.

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It was the only explanation for why my son went from a typical 5 yr old to a raging, angry, irritable, hoarding, anxious child who could no longer fall asleep and was having gory, graphic nightmares and intrusive thoughts and who had such severe separation anxiety I could not leave his sight, literally overnight, two days after receiving a flumist vax. Took a year and many wrong turns before I figured it out. Yes, that's right, no professional could figure it all out.

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Overnight onset severe OCD. Suddenly no items that had been in school were permitted to touch anything in the house without a lengthy home sterilization process. From no rituals or any inclinations toward OCD to 4+ hours of extremely odd daily rituals. Three weeks after onset, the family therapist we'd contacted met w/us and said she expected PANDAS. Three weeks later, the internist to whom she referred us confirmed PANDAS.

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I originally thought DD's many different behaviours were the result of her just being a quirky child with ADHD, aspergers and some ticcing (and well, raging, bedwetting, motor delays etc.).

 

I also noticed that most of her symptoms disappeared with abx treatment (penicillin) for a strep throat. It was a WOW moment. A that point I started thinking her behaviours were perhaps due to an infection of some type.

 

But it wasn't for a couple of months until we got in to see the Pediatric psychologist that PANDAS was suggested to me, and a couple months later that I found a possible association between her multiple psych symptoms and lyme (here on this forum - Yay!). Then off to see the LLMD where we learned that her PANS was caused not by lyme, but by bartonella.

 

And it wasn't for a while after that I remembered a bug bite with a rash approximately 1 month before her ticcing started.

 

I just love the parents who end up here one week after the beginning of OCD or ticcing symptoms. It took me 2 1/2 years to figure it out.

Edited by rowingmom
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I knew it was something (didn't know PANDAs) when he took Zithromax at age 9 for a week and his attention span and personality improved so much. Went to the internet and put it together. Our son went from a calm and quiet 3 year old (seriously) to a needy, clingy, obsessive 4 year old with OCD. It took a loooooonnnnnnggggg time to connect the dots.

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We knew it was pandas when we made the discovery that he had a strep infection 5 days prior to overnight onset of irrational fears and OCD. We did t realize the connection at the time but when we checked back in his medical record that was a clue. That discovery was made 5 MONTHS fter the fact and we went straight to the dr for a strep test and it was still positive!!

Edited by JoyBop
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We knew it was Pandas after abrupt overnight symptoms 12 days after strep diagnosis. I actually thought he had a brain tumor. After 2 more positive strep tests and no remission of all these odd neurological/mood symptoms, I sat down in front of the computer, typed in "behavior changes with strep". Landed on a Pandas website and there was my son on cyber paper. Of course I thought, what is the likelihood that this could be?... The very next day, our Ped's called and after looking into ds history, started talking about this strange disorder. My head swimming, I said, "Are you talking about Pandas?". "Yes", he replied. Life changing moment....

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What confirmed it for us was ultimately the "pandas test". Thats the kind of proof I needed in order to proceed with IVIG (because that frankily was very scary to me). My son did not have strep or raised titers, so his diagnosis was not as straight forward as some.

 

Moleculera Labs does the testing. At the time this test was a "study" being run my Dr Madeleine Cunningham - a well know researcher that studies auto-antibodies.

 

You can learn more about the test, Dr C and the anti-bodies by googling her and searching this site. The used to refered to as the "Cunningham test" (its actually a panel of tests). Here is a link to the site with test info - http://www.moleculera.com

 

Good luck!

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I "knew" when DS took a 10 day course of amoxicillin for an ear infection and from days 3-10 he was a completely different person. He was so calm, pleasant, happy, and flexible. I didn't know about PANDAS yet, but that was the moment that made me start searching. After reading about PANDAS I was pretty sure this was it, but it was the Cunningham panel that gave me confidence.

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Kiddo had 14 of the then 14 symptoms of PANDAS. Her severe nightmares, OCD, vocal tics, separation anxiety, incontinence, aphasia, etc were all sudden onset right after a failed attempt to treat a sore throat. The second abx seemed to treat the sore throat, but the other symptoms remained. We tried a neuro and psych route for three months first before I stumbled onto PANDAS on the internet. After the three months we went to the pedi to get blood work ordered for ASO, and Anti-Dnase and found kiddo still had strep asymptomatically then. It took an additional two months to get rid the strep then, but the symptoms began improving almost as soon as the strep cleared.

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