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

  1. Strep Exposure During Holidays

    We have struggled with the very same thing - family we love and enjoy so much yet have health issues that trigger flares. There seems to be no way to avoid flares even with prophylactic abx and even avoiding times where they were explicitly sick. Perhaps they carry something who knows. We have to decline holidays or make due with some sort of outdoor activity like hiking.
  2. Its hard to comment without knowing much about your son. How old is she? Some more information might help. Have you read through the entire symptom list? Have you read the article OCD in young children? But if I can guess you did not go to Dr T without very strong reasons.
  3. My kids follow a similar path declining in October. Although this year we have had no summer respite. It also seems that with the new year they begin to slowly improve. This doesnt make sense as half life of Igg is 21 days. Our current theories are reduced levels of vitamin D, increased exposure to sick people, dietary changes (less greens, fresh vegatables) or seasonal changes to the immune system (https://www.nhs.uk/news/lifestyle-and-exercise/study-finds-seasons-may-affect-immune-system-activity/)
  4. What a crazy story. I have never heard of local PDs assisting like that. Glad your son is better now!
  5. 7 years of PANDAS

    You have a heartwrenching story. I do understand the feeling of wanting to give up. This torture goes on for years, it seems that most of the health care industry, insurers and even friends and family are fighting against appropriate care. It seems there are few success stories. I totally agree - you are not a failure as a parent. You sound like you have poured all of yourself out into the bottom-less pit of PANDAS. I hope that you can find some rest and comfort in this time and that your daughter can one day find recovery.
  6. I have heard the pay-first approach has worked with UHC with a few other people. We also use Dr L. We did try that for IVIG and was successful the first time, not the second. Andrea at Dr L's office seems fairly experienced with this. BTW what is the cost for rituximab? I thought the patent expired so cost should drop?
  7. Glutamate and Pandas

    My kids have been kinda-sorta REID for a while. REID is more than just low glutamate but also targets meat consumption at 20% (I think) and lots of raw greens, vegetables etc...among other things. Its super expensive to do this. And like the posters above we found it super difficult to do, given all of other things they have given up, and it has a lot of social impacts on the kids. We have made progress reducing free glutamates (REID does NOT worry about glutamates in vegetables, they are bound) We try not to have processed meats, e.g. use fresh pork sides and salt them afterwards. They only drink raw milk. We try to do lots of greens but mainly in the summer out of the garden (cost.). No processed foods, which means we eat whole foods. Very little sugar. But I can say that we do see improvements. To us the big question is their seasonal PANDAS spikes. If we chart their symptoms they begin to increase in October and peak in December and then have another shorter spike in the March or April. We used to think it was allergies but wonder if its something else like diet. For example we used to let the kids do Halloween candy but noticed they would be awful afterwards.
  8. Urinary issues are one of the first symptoms of strep for my daughter. One of the grand rounds slide decks shows that the early treatment in a flare reduces duration. Its critical to get swabbed and cultured. Also, consider round the clock ibuprofen and if you have a doc steroids.
  9. Keflex Dosage

    By a dose chart that does seem high but I have no idea. I would ask a pharmacist. I have not heard of many P kids on keflex.
  10. Nodding Syndrome

    Another great story, particularly because this ends with success.
  11. New Yale Vaccine Study

    Thank you both for sharing. I found wakefield's point on how environmental effects can combine to produce more severe issues fascinating. One study I would like to see is adopted kids in P families. I know of one family where both the biological child and adopted child have P.
  12. New here. Old PANDAS

    What genetic test did you run?
  13. Paying for IVIG?

    Funny. We payed cash up front - there was no other option. UHC payed for some (40%?) of my kids IVIG after the fact.
  14. I did not find the specific mutation, just TPSAB1.
  15. Migraines during flares?

    My daughter complains of both generalized and local pain. This may be heightened by fears. It is so difficult to understand and for her to communicate.