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nitshel

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Posts posted by nitshel

  1. I forgot to add that we did Lyme testing through IGeneX. Here is what we got...

    IGenex TES : NEGATIVE

    CDC / NYS TEST: NEGATIVE

     

    18 KdA --

    **23-25 kDa --

    28 kDa --

    30 kDa --

    **31 kDa IND

    ** 34 kDa --

    ** 39 kDa IND

    **41 kDa ++

    45 kDa --

    58 kDa +

    66 kDa --

    ** 83-93 kDa --

     

    Does this indicate Lyme? Is it possible that his tics are also worse because of die-off (herx) reaction?

  2. Thanks Chemar,

    The Doc said that even though our son did not have all the symptoms of PANDAS, there may have been an underlying infection (hence the antibiotics). The prednisone was not something I was clear about - althouhg she did say it was to calm the immune system down.

     

    I guess my questions now are

    1. We stopped the steroids 2 days ago - how long till it is flushed out of my son's system? And will his tics subside (or are they now at a "new normal")?

    2. Is there a checklist (perhaps on this forum) that tells people how to distinguish between infection-driven neurological condition and straight-up TS? It may be somehwere but I cant seem to find it....

    3. I've read that TS is usually inherited and there is no neurological conditions that exist in our family - or even the extended family...so if this is TS then it is extremely strange...any thoughts on this?

     

    Right now I just want my happy, beautiful boy back....

     

    Thanks for all your advice and support!

  3. Hi

    I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. Ever since, he has been much better and the only thnig that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes.

    - put him on a gluten free, dairy free, reduced sugar diet.

    - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc.

    - for a while, he was on a very strict, candida free diet and diflucan and probiotics

    Given that all of the above did not get rid of his grimaces, our suspicion turned to PANDAS. We spoke to a Pandas specialist and now have him on a dose of antibiotics with a steriod (prednisone). Three days into this treatment, we noticed a significant change in his behavior - a lot of rage and frustration. After about 5 days, we also noticed that his vocal tic had started to come back. Today is the 6th day, we've stopped prednison (after reading online that it is a significant tic triger). His grimaces are much reduced but his vocal tic is back and we are besides ourselves. The nightmare has returned.

     

    Has anyone experienced the above before? Are his vocal tics really prednisone or just a herx reaction - is this just a strep die-off?Could his tics be the antibiotics?

     

    Your help and advice is much appreciated.

     

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