Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

Hrosenkrantz

Members
  • Content count

    189
  • Joined

  • Last visited

  • Days Won

    2

Hrosenkrantz last won the day on July 1 2014

Hrosenkrantz had the most liked content!

About Hrosenkrantz

  • Rank
    Advanced Member

Recent Profile Visitors

199 profile views
  1. Kind of Urgent and Need Your Help

    Trinitity why haven't the neurologists been able to help,? That's too bad...
  2. DCmom...what is the reason not to give oral steroids as a taper after a high dose infusion?
  3. article: Bicillin

    our infusion nurse recently mentione this to me. i haven't heard much about bacillin though in the years (!) we have been dealing with thill iillness. Why isn't this treatment discussed/used more?
  4. low dose Abilify for rages?

    fallingapart,what was the bad reaction to lamictal? I'm interested in this med for my son...
  5. LLMD in DC/Va area?

    I believe the two main llmd options in dc area are the jesmek clinic, and also Debbie McCabe at NIHA, working w Dr. fuller
  6. Question about cunningham panel

    We were recently were told to do the Cunningham panel, and I checked with the company that administers it -- they say you should wait 6 weeks from IVIG, steroids or PEX to do the test.
  7. Where do we go from here?

    Beerae22, did your daughter have any kind of negative reaction to Bactrim? Just curious... My son reacted terribly to it...
  8. Ophelia, What is Dr. Najjar's recommendation on what you should do next?
  9. Spoiled rotten

    Hi Beerae, I don't know what the answer is, but i think you bring up the question that so many of us struggle with, which how much of this can be addressed through "behavioral' interventions, and how much of this is behavior that is immune to these kinds of interventions? I mean, we don't want to let our kids behave in unacceptable ways, but will they/do they even respond to the kinds of response we would give to a non-sick kid who is exhibiting in appropriate behaviors?
  10. holiday season

    Hi -- I came across this and thought it would be helpful to some Kind of on topic, kind of not... http://www.washingtonpost.com/news/parenting/wp/2014/12/08/tis-the-season-for-difficult-questions-holiday-party-tips-for-parents-of-a-challenge-child/?postshare=8501418078012342
  11. Slow Auditory Processing....

    smartyjones -- I have been following this thread but have hestitated to post because I'm not sure how applicable my experience is. My son had auditory processsing issues before I even heard of PANDAS and was diagnosed with a language diorder when he was four and a half (something called mixed expressive receptive langauge disorder). We tried adderrall when he a bit over 6 (he was later diagnosed with ADHD) and it made him talk, very manically. But he was also in throes of undiagnosed PANDAS at the time. I do not know if auditory processing issues are like to autoimmune responses to infections, but I do know my son's langauge and processing improved quite a bit after an initial round of antiobiotics following the PANDAS onset, and then REALLY improved with a 6 weak course of oral steroids. He has done a series of ivig/iv steroids this year. The infusions have helped his langauge in that we have seen improved expressive language. Sometimes his processing and responses though do seem rather slow, though.. We have done the listening programs over the years. We're always told our son responds well to it and enjoys it, but it hasn't struck me as a game-changer, certainly not one with long-term effects...
  12. Rifampcin or Rapamycin?

    We were on rifampin earlier in our pans journey-- I forgot how long, it maybe was a two or three week course, along w clindamycin. Interestingly, the first week my son was on the rifampin, he did did beautifully, to the point that there appeared to be nothing ailing him at all. Week two he went down the tubes.
  13. PANDAS and ADD meds?

    Awilliams, dcmom -- thanks for these detailed responses. Definitely very helpful and gives me a lot to think about,
  14. I know this topic had been discussed before, so apologies for posting again... Is there any reason why PANDAS/PANS kids should not take ADD meds? I'm not referring to a general preference for supplements or ntural means at getting at ADD-related issues. I'm wondering if there is some kind of medical reasons why PANS kids should avoid the meds (the way some have bad reactions to anti-depressents, for instance)
×