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


smartyjones last won the day on June 26 2014

smartyjones had the most liked content!

About smartyjones

  • Rank
    Advanced Member

Recent Profile Visitors

10,132 profile views
  1. tonsillecomy - oxy or tylenol

    I am always afraid to jinx myself - so I'll just say he is doing very well since the surgery. He is on a steroid though - doc has worked with many PANDAS patients and does 3 days to curb inflammation - in surgical area, but anywhere else also. Today is last day of steroid. He was not on abx pre -- started after surgery. Tonsils are being cultured, so we will see if that turns up anything.
  2. Hello Old Friends! DS 13 (time flies - I joined this forum when he was 4.5) just had tonsillectomy and adenoidectomy on Monday. He is doing well. YAY! He was/is not symptomatic for PANDAS but tonsils were huge and he has had some illnesses and sinus infections in past year and they remain almost touching. Doc said "plus 4" on scale of 0-4. Doc was very surprised he doesn't have breathing/sleeping trouble when he saw adenoids and these big tonsils. He is doing well with pain and I don't' want to give him more than I should but I don't want to give too little. He has oxycodone without Tylenol. I want to switch him to Tylenol but am stuck with which is the lesser of two evils. He does not have any MTHFR mutation. Any opinions? Thanks!!
  3. Trying new treatment

    thanks. why do you think this works? we have seen good results with homeopathy - but i am always on the look out for plans B, C and D. ds14 has had a bartonella-like rash for over a month. he tests negative on blood tests. he is taking a homeopathic remedy and he does not have symptoms. I cannot image what else this rash is but bart. I am happy he does not show symptoms but fear he may in the future. sounds interesting but I also have concerns about ammonium -- do you have thoughts on that? thanks!
  4. Trying new treatment

    hmmm.. . interesting. how long are you anticipating that $400 tube will last? And how long are you anticipating using this cream? Thanks.
  5. who can hit me with their good wording for flexibilty in attendance requirements and utilization of partial days? he has 6 days medical absences and it's only early october. a possible strep that turned out to be a bad case of hand, foot and mouth. the good news is he had a serious physical immune reaction -- wooh hoo -- hoping that cleared it and it doesn't go rouge to cause stealth trouble. thanks!
  6. last week, my son had a suspicious rash on underarm. rapid was negative, ped put him on antibiotics while awaiting culture. after 4 days on keflex, he has a headache, fever and sore throat. What do you think about developing symptoms after 4 days on abx?? he has not been on abx for almost 2 years. this can't be c-diff can it?? Thanks for opinions!
  7. I wanted to paste a picture of what I think may be pastia's lines in my ds's underarm but can't seem to paste. I believe I am taking him in anyway tomorrow am for a strep test but wanted to get opinions. Does anyone know how to paste a picture to a post? Thanks!
  8. Tired of playing doctor

    yes, it is so frustrating to have to make the decisions but feel not the best qualified to do it. i feel ya! how are you taking her off the abx when you do? are you weaning or just stopping? for initial exacerbation, my son was on abx that we likely took him off cold turkey. we then used homeopathic options. whenever we tried to stop that one (even wean) he reacted - so we left him on it for a long time (but it was not abx, so i wasn't as worried). when we finally took him off, we did it very slowly and watched carefully. he has not been on abx for a long time and uses them only in acute situations. last year, he had a lyme rash. i forgot b/c he hadn't been on abx for a long time. we just ended the doxy when time was to come off. the next day was a disaster at school - and i mean disaster! a few months later, he had strep. this time - i remembered and weaned him off and he did much better. can you have your docs support in weaning off the abx and adding back if needed or prescribing so you can do the weaning?
  9. oh qannie -- awesome!! please keep posting results and experiences!
  10. headache every 10-11 days

    we just extended him - he had been going for ART every 2 months. he's been doing so well, we just extended to 4 months. this past week is 2 month mark. this headache is the only symptom showing. thanks for your thoughts!
  11. headache every 10-11 days

    ahhh -- sf mom -- I was hoping you were still around! I know you are the keeper of the TBI info! thank you - I can never keep the cycles straight. it's on the upper left forehead. comes on out of nowhere. can only get rid of it with motrin.
  12. any thoughts on a recurring headache every 10-11 days? that is the only symptom. it may be the 4th cycle now. this child had sudden onset 7.5 years ago. has been treated for everything -- long term treatment for strep, lyme etc, viruses, fungus, etc, etc. he relapsed last year with active Lyme (beautiful hiking pictures ~2 weeks prior to rash), then strep, then myco. he's been what I consider in remission for give or take 10 months. thanks!
  13. Does anyone have any info or experience with the new JHU Lyme Clinic? It looks pretty research-based but does mention medications, so looks like they are trying new treatments to research. I'd appreciate any info anyone has. thanks!
  14. Pow Pow -- are you still on this forum? I have met someone whose child is still struggling despite quite a few serious treatments. it reminded me of your daughter. I cannot remember a lot, but think she did better after she got a different diagnosis. would love to connect with you. thanks!
  15. oh - so sad -- or not -- that I can't remember the key words I need to find an old friend on here. not that I don't love you all who are forever part of my heart -- but I am glad some things have slipped my brain! I think it must be like the pain of labor slips from your mind -- the trauma of PANDAS and all the research and info you think you can't get away from somehow recedes from you mind. who and where is my old friend with many children and a beautiful daughter who struggled so very much until being more properly diagnosed with I think - some more specific form of autoimmune encephalitis? I have someone whose child has struggled amid many treatments and I am trying to remember some of this info. Thanks!