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mbourque22

Have any of your PANDAS kids had a seizure with a strep infection?

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My 12 year old daughter was diagnosed with PANDAS in 2008... She initially presented with severe anxiety and OCD (compulsive thoughts, mostly about eating, seperating from me and school) and then we found out she had strep, (she did not have any typical strep symptoms).She was diagnosed with PANDAS @ Children's in Boston but we were basically referred back to a mental health provider to treat her symptoms. We went through ###### with her not eating (she lost over 20lbs) or wanting to go to school and trying all sorts of pysch meds. She is now on 50mg of Prozac to keep her symptoms under control but if she gets or is exposed to strep they flair up.... This past Saturday night she was at a sleepover and she threw up in her sleep and began thrashing her legs...the girls could not wake her up and after several minutes then woke up the dad and he couldm't wake her up for awhile either. We had her checked at urgent care and they did all sorts of tests including tox screens which were neg then they started thinking seizure. Late Sunday night after being transported into Boston by ambulance for CATscan and more tests, etc. We were released and told to follow up with our Neuro the next day. When we woke up the next day she was still really out of it and twitching, she was staring off and had that funny look in her eye and her pupil looked big to me. I brought her to her pedi and she did not like how she looked, she was so limp and dazed she could not even recite her ABC's. I asked the pedi to do a strep test to rule out a PANDAS flair up and sure enough it was positive, again she was not sick and had no typical strep symptom. We were sent to the Chlidren's ER to meet to nuerologist immediately and they started her on antibiotics right away. We have to sleep deprive her tonight and go back to Children's tomorrow for an EEG.....She is still sacked out on the couch, very tired, with a bad headache. Has anyone had anything like this happen or heard of something like this before????

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This past Saturday night she was at a sleepover and she threw up in her sleep and began thrashing her legs...the girls could not wake her up and after several minutes then woke up We had her checked at urgent care and they did all sorts of tests including tox screens which were neg then they started thinking seizure.

 

When we woke up the next day she was still really out of it and twitching, she was staring off and had that funny look in her eye and her pupil looked big to me. I brought her to her pedi and she did not like how she looked, she was so limp and dazed she could not even recite her ABC's.go back to Children's tomorrow for an EEG.....She is still sacked out on the couch, very tired, with a bad headache. Has anyone had anything like this happen or heard of something like this before????

 

 

mbourque -- i have not had experience like this with my ds6, pandas. however, i myself have a history of migraine headaches. i think there is some connection btwn migraines and infection triggered disorders -- or maybe migraines may be infection triggered.

 

as a kid, i didn't get much visual stuff but i do now. recently, i was doing a craft with my kids and there were little gold triangles that look just like a shimmering aura i get with it. i showed them that this is what i get in front of my eyes when i have a bad headache. my pandas 6 ds said, "but it's bigger right?" i said, "what?!" he said, "i mean for you, they're bigger, right? FOR YOU, i was talking about FOR YOU." it made me think he's possibly gotten it but hasn't mentioned it.

 

as a kid, i seemed to get them with sleep and food deprivation (not really deprivation, but you know what i mean - ?). i think there may also be a hormonal trigger but i am also curious about an infectious trigger.

 

i've highlighted some symptoms that i would also have as a kid that you note. i can't remember how often i'd have them, but it got to a point that my parents would look at me and know something was not right before i said i didn't feel good or did something odd. i'm also sending you a PM.

 

did you hear of that newscaster that recently had a migraine on air? she just starts speaking jibberous. i didn't hear the final but i believe they thought it was a migraine. i can try to find it for you to see.

 

obviously, your neurologist should be skilled in diagnosing migraine, but i wanted to mention it.

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

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