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


      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


  • Content count

  • Joined

  • Last visited

  • Days Won


NYCMom last won the day on November 6 2017

NYCMom had the most liked content!

About NYCMom

  • Rank
    Advanced Member

Profile Information

  • Gender
  • Location
  • Interests
    Gardening, taichi, karate, motorcycles, snowboarding
  1. Probiotics recommendation

    Yum Yum Dophilus is the favorite in our house. We tried Klaire labs, but it really all comes down to taste for our kid. He really likes Yum Yum.
  2. Prophylactic Antibiotics

    A couple of thoughts: 1. Antiobiotics treat more than just strep, so prophylactically will protect from other infections that could be triggers. 2. Those of us who have treated prophylatically, have also found anecdotally that the antibiotics seem to have a secondary effect of reducing inflammation.
  3. Hello and welcome. Our son (15yo) is/was also a mild case. He had some eye blinking as a toddler but nothing consistent or alarming. Classic PANDAS appeared at around 6yo after a strep infection. We had tons of symptoms (tics, hyperactivity, encopresis, night terrors, insomnia, emotional lability, etc.) but overall still a bright, functional kid and no school disruption. He was positively diagnosed using the Cunningham panel, which also showed him on the mild end of the population. Other than some minor diet changes, we only treated with prophylactic antibiotics and occasional ibuprofen. Tics are one of his more lasting symptoms (infrequent now, but he still does flare a little). He did have some stomach issues that could have been from the antibiotic use, so we would sometimes take breaks and address his gut health. He is a happy high school student now, straight A's, no current PANDAS treatments other than probiotics. His tics don't seem to bother him at all when he flares now and they are much milder as well. Steroids are the ‘big stick’ used to get brain inflammation down when ibuprofen is not effective.
  4. Yes we found that the antibiotics helped with daily symptoms as well as flares. Our DS contracted Lyme (we figured it out because of a flare) and was successfully treated (we hope). He still flares occassionally and we've stopped trying to figure out the sources. There are just too many and the info wouldn't really make a difference in our approach unless there was an active infection to tackle. Instead we double down on probiotics and lecture about clean eating.
  5. This is great. I look forward to more of these polls/mini investigations. I think we have such a wealth of untapped info here. Thank you!
  6. Yes encopresis (uncotrolled bowel movements) is common in PANS kids. Our doc thought it had something to do with constipation and gave us laxitives for it.
  7. Short Poll for PANDAS/PANS Mothers

    As a former medical researcher I totally understand. Looking forward to the results and explanation, although you're going to need a lot more responses
  8. Short Poll for PANDAS/PANS Mothers

    Would love to know the purpose or hypothesis behind the poll?
  9. Two thoughts: 1. Some of us have kids that flare in the presence of infections in others. So there's not necessarily a need for an active infection in your child for them to exhibit pans symptoms. 2. Some kids also appear asymptomatic even though there is an active infection. You just might not know it. AND to make it worse, some kids do not even test positive for an active infection.
  10. Thermometer

    No, I haven't gotten that far. Just researching alternative therapies right now. I read "Stop the Thyroid Madness" and I've been altering my diet slowly, dropping goitrogens, taking ashwagandha, etc. I just bought a simple oral NES stick thermometer. I haven't testing it against anything else for accuracy but it seems to work fine.
  11. Thermometer

    I'm doing the same thing! I researched thermometers for accuracy and picked a digital one (NES brand), so sorry no alternate recommendations. However, here's a good thyroid/adrenal chart to use: http://www.drrind.com/therapies/metabolic-temperature-graph There are downloadable chart files in there somewhere.
  12. New Member - ABX working

    I can only share our situation, but I'm pretty sure we're not unusual. You can see our course of treatment in my signature. Our ds13 has been on and off abx for years. He is currently off and only has minor flares now, mostly tics and some mild adhd behaviour. We're pretty sure his flares are due to the canary in a coal mine reaction to others around him having bacterial OR viral infections. When he's ticcy I usually find out that one of his classmates has strep. It's mild enough that we have been choosing not to treat, rather than mess with his stomach. We stick to trying to keep his diet clean (low sugar, refined foods, gluten, etc.) and trying to keep him a daily regime of probiotics (klaire, kefir). That being said, he's a teenager now so his habits are somewhat out of our hands. We just keep talking to him about making good choices and taking care of himself. There are a lot of different scenarios on this board. Some kids can't handle even mild exposure and flare really strongly when off abx. You have to be a good observer and gage your kid.
  13. Probiotics with Abx

    Yum Yum Dophilius Klaire labs All kinds of Kefir
  14. Yes, very common. Immune system is distracted by an actual infection.
  15. I'm noticing a lot more postings of research articles and papers recently. I think this is a good sign that the medical community is starting to 'loosen up'. Here's one about narcolepsy but with lots of references to what we all talk about all the time on these boards... http://protomag.com/articles/betrayal-within