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


beeskneesmommy last won the day on June 13 2015

beeskneesmommy had the most liked content!

About beeskneesmommy

  • Rank
    Advanced Member
  1. Sydenham's chorea along with PANDAS

    Has Dr L not done bloodwork? It would be logical that Strep is present with SC. Long term abx would be important. Augmentin. We did a combo of Augmentin and Azith. Is Dr L prescribing abx? Curious as to why your kiddo is not currently taking something. I'm not on these boards much. My son has been in recovery for a long time. However, he had SC, quite severely. We saw Dr. L and others. You're welcome to contact me. Hang in there!
  2. A close friend in the Hampstead/Wilmington, NC area has a 12 year old son with extreme anxiety and other health challenges resulting from PANS. He is home bound from school. They are looking for home care help, but having little luck finding someone qualified to work with her son's unique symptoms. The ideal care giver would be a nurse, mental health aide or special education teacher experienced with extreme behavioral/mental health challenges. They would like help up to 5 hours a day with daily tasks for him.

    Can anyone recommend an individual or agency?


  3. Dr. Denis Bouboulis, Darien, CT. http://advanced-allergy.com/
  4. Pneumonia Vaccine? Yes or no??

    That's a big NO. I know of several kids who have gone into tailspins when this vax was administered. Some specialists don't do it for this reason.
  5. Frustrated

    Thx, that's OK. been with him for years. Got the info I was looking for
  6. Frustrated

    Losing my mind with frustration regarding a doc's office in CT! Has anyone spoken to the office mgr over there and if so, can you message me contact info?
  7. My son had a terrifying herx when he started Azith (in addition to Augmentin that he was already on) at age 4. We hung on and stuck with it and after a few weeks things evened out. The combo turned out to be a wonderful part of his treatment in getting him to recovery. Interestingly, a couple of specialists have told me that when a herx is very evident, it often indicate Lyme or another tick born infection. I have never fully accepted the Lyme DX, as my son was classic Strep:PANDAS...but whatever was going on, that herx was the start of his recovery.
  8. Dr. B's Office

    I am PMing you.
  9. Been a long time...

    Hi Guys: It's been a long time. In my experience, when we don't hear from someone, it's either very good, or very bad. Mine is the former. Through trial and error, peeling many layers and years of riding the roller coaster, DS, now going on 9, is OK. Things started to even out in August 2013 with the final intervention of going GF and learning of a multitude of allergies, followed by weekly shots with low dose serum made by his PANDAS specialist. Of course there were many interventions before this, including HD IVig x 2 and long term abx, steroids, lots of testing, etc. However, we are going on 2 years of doing great. DS has had some very minor, short lived flares when exposed to illness (particularly Strep) but is living a happy, normal life with sports, social fun and great grades. I am stopping in to the forum to offer encouragement to you all. DS's symptoms began at around age 18M, pretty sure he had his first round of Strep at age 14 WEEKS. He was officially dx at age 2.5. There were years of heartache and terror for us as parents. There were years of negligent and neglectful doctors, and there were many nights when I lay awake in tears wondering if he would ever grow into a whole adult. When I look back upon those dark times it seems nothing short of a miracle that we have a healthy, happy, bright boy. I am here to tell you that your kids can get better. Don't give up! Don't lose hope, my friends! Warm thoughts and healing prayers to you all. Kath
  10. any feedback about JuicePlus?

    I tried a sample with my son and he hated the taste. I didn't think it was that great either. We use Nordic Naturals gummy fish in tangerine for omegas. It is very high quality and tastes pretty good. Re: the multis, i use the marvel superheros gummies or Little critters. As long as they don't have gross due and trash in them, I feel like they are OK....of course my son is so picky that i am thankful that he takes ANY of them!
  11. Need Pandas pychiatrist in Maryland

    Dr. Josephine Elia is at Nemours Dupont in Wilmington DE.
  12. Interesting hotel north of Dr. B's office

    Well, that takes care of both Dr.'s L and B!
  13. My 4yo just finished 10 days of azithromax...

    Yes. My son had the same facial tics. Started with the eyes and we had the same results with abx at first. Do NOT wait it out and see if time will tell. Make an appointment TODAY with a PANDAS specialist. It will likely take a couple of months to get in. If it turns out to not be a problem, then you can always cancel, but you will have that safety net. The earlier you catch it the more likely you are to arrest it with medication. Once it jumps the track and gets going, the train is much harder to stop. Early intervention is very valuable! You are welcome to message me if you want help with docs. Warm wishes! -Kath
  14. Herbs / Meds for Parasites?

    I have heard Enula, avail on Amazon is good. Specialist recommended in conjunction with Mepron but we just D/C'd the Mepron and we are taking a break.
  15. Experience with Mepron?

    Talked to Dr. B tonight and we agreed that stopping the Mepron is a good idea. plan is to observe carefully and to contact him if DS has more night sweats. Clearly, something is going on with the intermittent night sweats - they are abnormal and drenching when they have been present. But the Mepron is not for us at this point. After a long nap this afternoon, DS was looking a bit better. I think that the Mepron was interfering with his sleep, among other things! I think we need to be grateful for the past year of great health and gently work on the night sweats and very mild and occasional symptoms...when we get back to them alone. I have faith that he will come back from this fast. And thanks, gals, on the Oy Vey comments Ya made a WASP chuckle!