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    JSL25 got a reaction from jenie_penny in Does PANDAS always have OCD and tics?   
    Some of the things you listed at the bottom of the post could be considered OCD. For example, my daughter’s OCD is around clothes and how things “feel”. 
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    JSL25 got a reaction from CozICan in How long Can I do Ibuprofen?   
    My daughter (age 4) had her first noticeable flare with what we believe is PANDAS about a year ago. Many doctors visits and no one was able to help us. We finally got in to Dr. T in NJ when she made a drastic improvement on her own (6 months after initial onset), so we decided not to follow up with him. Now, 6 months later, it all came rushing back. I’m trying to get into doctors appointments again. While we wait, I tried giving her ibuprofen 2xday for three days and she was 100% back to normal. Miraculous. Now, 36 hours off ibuprofen, symptoms are back. How long can I give her ibuprofen for? I realize this is not a long term solution. She’s currently not on any other meds except for a probiotic. And, I’d love to hear how people successfully battle these flares so I have some background to go into our specialist appointments with. Is it always a course of abx? Thank you. I’m so frustrated we’re back in this nightmare. 
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    JSL25 got a reaction from Sirena in Philadelphia Area Doctors that believe in PANDAS/ PANS   
    I'm also in the Philadelphia area seeking out treatment. I've been calling around all week and will let you know if I come up with anything. So far CHOP has been no help at all. Neither has DuPont. I've been to several docs at both places.
  4. Like
    JSL25 reacted to SAR2011 in Looking for any Guidance...   
    I apologize in advance because I know there are several similar posts. I know this because I’ve been reading the forums for a while now but I am desperately seeking guidance at this point.

    Prior to Labor Day of this year, our four year-old son was an extremely verbal, high-functioning 4-year-old boy with normal physical, psychological, and academic development. Then, seemingly out of nowhere, he started having terrible nightmares that eventually evolved into daytime hallucinations. He also experienced a significant regression in speech. We noticed a severe deterioration in his sleep patterns and additional changes in his behaviors and personality. He developed an ever-changing pattern of nervous tics and his regression got to the point where our son was (is) almost entirely non-verbal and is consumed by anxiety that has significantly impeded his well-being. We have to drive him around in the car at night, often for hours at a time, in an effort to calm him enough to go to sleep. I should’ve mentioned that he had strep throat in mid-August, which was treated with 10 days of amoxicillin.
    Although we live in northern New Jersey, we brought him to CHOP in October because of their infallible reputation for pediatric neurology. Our son has since been hospitalized at CHOP for three different stays, during which he has given more than forty different blood panels, sat through three EEGs, two MRIs, a lumbar puncture, one abdominal ultrasound, and one throat Doppler. Unfortunately, none of these tests and procedures resulted in a diagnosis for what is suddenly ailing our boy. Each attempt to determine if there is an organic, metabolic, or genetic issue has failed to produce conclusive results.
    In reading all of the symptoms of PANDAS/PANS, it certainly seems like this is what is plaguing our son. However, none of the extensive blood work that was done at CHOP has resulted in markers that typically indicate PANDAS/PANS. I know that this doesn’t eliminate the possibility and from what I’ve read on here, it sounds like CHOP doesn’t exactly embrace the PANDAS diagnosis.

    My wife is in her third trimester with our fourth child and we are at wit’s end in trying to determine what our next step should be to help treat our son. We met with Dr. Elias at Dupont in mid-December but were kind of left in limbo there. We are scheduled to go back in early February (her first available) but, as many of you know, six weeks is an eternity at this point. We feel like we are on an island and have no clue where to turn to help get him better. I’ve researched several doctors in the NY/NY/CT area (Dr T, Dr B, etc) but it seems as if every positive review is followed by a scathing one.

    I’m sorry for writing a novel but we are desperately in need of help. We want to help get our child the proper diagnosis, which we believe to be PANS, and get him treated aggressively and quickly.

    Thanks for listening.
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