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

sethsmom

Members
  • Content count

    5
  • Joined

  • Last visited

  1. Mycoplasma again...

    Hi! In my experience you need far longer then 5 days. Mycoplasma is insidious and can become intercellular. My son is on biaxin which was far more effective then azithromycin. Doxy is also a good antibiotic for mycoplasma. Have you done any blood work for immune system? It turned out my son had an immune deficiency as well and has been on prophylactic antibiotics for a year now. Hope this helps!
  2. Marcy, We see Dr. Williams out of Mgh in his private practice. We are on a waiting list for Dr. Sharf, a neurologist at Mgh. We have an appointment with Dr. Trifelleti as a second opinion as well next week. I am interested in Dr. Gellar as I had read about him and think hes heading the T force geeen study out of Mgh. Our son was accepted into this study out of the Nashua site. I wish I could tell you more about any of the doctors you mentioned but we are in the same boat with trying to tease out the best alternative for a second opinion. We like Dr. Williams but as you say our son is in a situation that he has not really seen. We are on the fence about kerping the Dr. Trifelleti appointment as there are mixed reviews and we have been to so many doctors our son is burned out, a 4 hour trip to get there is dissuading us. Do you live in Mass? If I get more info I will pass it on. If you do please let me know as well. Good luck with your son, I understand the challenges of trying everything to help what feels like an impossible situation. Wishing you much luck in your search! Darcie
  3. Severe vocal tic

    Thank you so much for your input and support! We are now at 3 weeks and 2 days with no talking. He tics in his sleep, when he can sleep. The doctor is going to give him a different antibiotic and try a steroid burst. We have abilify on standby but really don't want to use it. Seth is weepy and sad, he has not been able to go to school this entire time. We do give him magnesium but I'm unfamiliar with the taurate? Can you get that online? Also, the other supplement you mentioned could you give me more info on that? Thanks again for taking the time to reply and the information!
  4. Severe vocal tic

    Hi Sheila, Thank you so much for responding. Seth started sneezing after a croupy cough that he had had previously in February and was treated with prednisone, antibiotics and an inhaler. In April it reappeared and he was treated with just prednisone and given a nebulizer treatment. About a week later the sneezing started at school. He had this croupy cough the previous 2 years as well which doctors now think may have been a vocal tic but it always got better with medicine. Prior to the sneezing I really can't recall any other tics. We are in Massachusetts and currently see Dr. Williams a child psychiatrist who specializes in Pandas/Pans. We are also on the wait list to see Dr. Sharf a neurologist at MGH. We had been at Childrens but there approach was to continue to push the anti psychotic dose up and add kolonopin when Seth went into crisis at the onset of school. We just had blood work done and he tested positive for mycoplasma pneumoniae and high IGG. He started on azithromycin last night. It has been over 2 weeks since he has been able to speak and hes really exhausted and down. We see Williams next Thursday. If you have any suggestions as to what to ask at this point we would really appreciate it. I also made an appointment with Dr. Trifiletti in New Jersey. And called the Yale tic program. I hate to confuse things but I am feeling desperate for Seth. His tic has morphed somewhat through this constant, rapid phase we have been in and is more like exhaling with a rasberry noise. He still cant suppress long enough to talk. Any advice or additional resources are welcome! Thanks again
  5. Severe vocal tic

    Hello, I am new to this site. My 10 year old son starting sneezing in April out of the blue one afternoon after I picked him up from school. This journey has had us on Risperdal, haldol and when the side effects outweighed any minimal improvement transitioned to intuniv and clonidine extended release, the new doctor went back to the basics. As he has not been able to speak in 12 days the tic is so severe the doctor started him on Keflex as a long shot to see if there is a PANDAS component. He wants us to then try abilify. We also supplement with magnesium, gaba, vitamin D and recently started cbd oil. We are so concerned for him currently, as the tic is exhausting him and emotionally he is very isolated and down. He also tics in his sleep and wakes every night around 1am and is up until about 4am, if he is able to get to sleep at all. This is after giving him trazadone, benadryl and melatonin. If anyone has any feedback or has dealt with something like this we would greatly appreciate it.
×