anyones child diagnosed with PANDA disorder

Discussion in 'disABILITIES Community Board' started by chrysdrew, Feb 11, 2012.

  1. chrysdrew

    chrysdrew Part of THAT World

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    Our 6 year old ds has suddenly developed symptomsof adhd. Also sudden change in vision],fine motor skills and speech pattern. Scheduled to see neurologist but searching for answer in meantime. Came across info on PANDA. he had his tonsils removed in august because of repeated step. He always acted crazy whenever he had step, pediatrician said it was probably because of the additives on antibiotics. Just wondering if it is a possibIlity.

    Thanks!
     
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  3. clanmcculloch

    clanmcculloch DIS Veteran

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    The infectious disease specialist hasn't actually diagnosed PANDAS but he is following the treatment protocol for PANDAS for my DD14. She had sudden onset of OCD caused by strep. He's hesitant to diagnose PANDAS because she had a very rapid improvement in her symptoms upon starting antibiotics which isn't common in PANDAS. It is definitely strep induced though.

    Strep can definitely cause behavioural issues. DD14's symptoms of strep typically include joint pain and worstening of her autistic issues. This time there were no joint issues so I didn't connect the increase in OCD issues to the point of full blown OCD over a very short period of time to strep. She must have had it for 6 months before I thought to ask for a strep test. She did 2 full courses of antibiotics and has been on a maintenance dose now for 4 months. I need to get her back to the infectious disease specialist to get her titres rechecked shortly. She is in full treatment for OCD as well (SSRI medication along with CBT) since eradicating the strep doesn't actually reverse what it triggered; it just makes it possible to get treatment for what's been triggered.

    Ask for strep titres. After an infection the titre will always be high but it should go down if it's actually eradicated. I'd also suggest checking for heavy metal toxicity since that can also cause very sudden onset.

    Unfortunately there can be other causes for sudden onset of symptoms. It's good that you've got an appointment with a pediatric neurologist. Even if this is PANDAS, you still need somebody who can help you with a plan for the other issues. I'd also work closely with the school to get him services for all of the issues he's developed. Just treating the strep will not reverse these issues unfortunately, if it is strep.
     
  4. clanmcculloch

    clanmcculloch DIS Veteran

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    Weird; this thread's not showing that there's a reply. Just trying to bump so OP can see that somebody replied.
     
  5. chrysdrew

    chrysdrew Part of THAT World

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    Thank you!
     
  6. ratlenhum

    ratlenhum DIS Veteran

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    My son has PANDAS. His anti brain antibody numbers were 400% elevated, worse than 3 east coast doctors have ever seen and we were sent out to CA to see an immunologist there. It was horrific for us as my son also has autism and was doing amazing, then PANDAS hit and we lost him a 2nd time.

    The problem with PANDAS is you can have symptoms LONG LONG LONG after strep is gone. With PANDAS, there is an autoimmune response to the strep, the body messes up and now for some reason thinks the basal ganglia part of the brain is a strep infection, so it fights it constantly. Your brain never leaves so the fight is always there even when strep is long gone. Antibiotics help and other meds help while the body slowly reacts less and less and strep titers come down. We tested my son's titers for 4 years and it took that long for them to go from sky high to normal range. We also had to do 16 IVIG treatments to get there.

    My suggestion to anyone with PANDAS kid, if you use probiotics, make sure the strain S. Thermophilis is not it in, and do not feed your kid yogurt as this strain is one of the "other active cultures" in every single yogurt on the market.

    The body reacts to strep, and even though S. Therm. is a beneficial strain, for most PANDAS kids, strep is strep it causes a reaction. My son was doing better with the PANDAS and we decided to give him a yogurt to test his milk/casein sensitivities not knowing about the S. Therm and OMG what a disaster. We caused an instant 6 month regression. It was horrible.

    What we saw when we suspected PANDAS was an overnight dramatic change in our son. The onset is usually very rapid, overnight. OCD, handwriting gets worse, vocal tics, motor tics, really wild emotional mood swings. My son could go from happy go lucky, to homicidal, to crying like a baby curled up in a ball and back to playing happily in about a 7 minute time frame. It was scary.
     

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