Jump to content
ACN Latitudes Forums
Sign in to follow this  
jordanawillis

Sydenham's Chorea/PANDA

Recommended Posts

I have only just found this website, as I did a search on PANDA after seeing a show on the discovery channel.

My son was diagnosed with Sydneham's Chorea, untreated strep infection, about a year ago. I.m spending a good part of the time trying to convince the doctors that his body jerking, facial tics emotional outburst are not due to an emotional upset but that something else is in play. My son, age 6, was a very happy content child until a year ago. Healthy eater, very active, very friendly, which surprised us when his mood swings went violent and verbally abusive. I dismissed this as a possible growth spurt and maybe the nerves were having a surge of testosterone..However when his body tremors continued to get worse to the point he couldnt walk and became bed ridden, I knew something else was wrong. All strep tests, over a three month time came back negative but the body tremors and facial tics continued. I noticed his hand writing and speech were terribly affected to the point that he could not construct a sentence. I finally was able to catch this all on video and show the doctors as previous visits he showed very mild movement as he was able to control his body movements by keeping active, or curling his toes inside his shoes. I never knew the extent until I saw the inside and all the interior padding was gone.

Never once did anyone mention antibiotics nor IVIG it just happened that he had an eye infection and the antibiotics they gave stopped ALL the movements. However once he finished the treatment all the shakes, tics, and aggression came back.. For the past 6 months we have taken a wait and see approach..Movements are getting less violent however I'm using antibiotics when he flares to see if this does help. After 3 months I have taken this back to my doctor who tells me to continue treatment when he flares. My doctor still thinks its an emotional issue as SC can sometimes have emotional triggers and will cure itself??

 

Now Im not a big believer in alternative medicine and still skeptical but Im desperate and would anything, dance around praying to the GOD of choice in order to find a solution/cure...Off to the homeopathy it was.. I have found somethings that do help. Vitamin C Complex B, magnesuim maleate, Probiotics minimum 23 billion, turmerc surpreme, grapefruit extract.. What I found even more helpful were his evening baths in epsom salt. I have yet to figure out if its the warm w ater, floating or all of it together that eases his tremors, it eases his body

 

Would anyone be able to tell me if zithomax or omicef is the preferred antibiotic in treatment of PANDA?

Has anyone had IVIG for their child? Is this something that is covered? Do you need a referral for an infusion center?

Does anyone have a doctor they would recommend in the Denver Co area?

 

I applaud each one of you who have taken the time to share your stories and hardships and advice. If anyone can help shed some light or share a similar experience I would be grateful..

 

 

 

 

Share this post


Link to post
Share on other sites

Hi Jordana!!!!

 

"My doctor still thinks its an emotional issue as SC can sometimes have emotional triggers and will cure itself??"

 

I would say this is BS....to put it politely. Main stream medicine will not address these issues.....other than antipsychotics or other brain altering issues. Some may throw abx at it to see what happens. You really need to get to a good integrative doc that is Pandas/Pans friendly.

 

I recommend Zithromax. Here is a video we found early and wanted to try it. Integrative Doc did this and we have been very happy. It discusses zithromax and it's properties of immune modulation. Her name is Susan Schulman. Use is usually 60-90 days straight then a tapering of zithromax......we did M-W-F for about 30-60 days. I cannot stress enough about probiotics roughly 12 hours separating probiotics and antibiotics. Sacchromyces Boulardi at the same time as the antibiotics as this can prevent yeast overgrowth.....which will be another set of problems.

 

http://www.thedoctorsvideos.com/search/detailed/1/?sort=addate&search_type=&search_id=schulman

 

Dr Nancy Ohara----good summary video.

 

Dr Kendall Stewart-----very indepth video about Methylation. Part 1 of 5......over an hour long. Def worth the watch.

 

Your child sounds a lot like ours. We had infections and vaccinations implicated in addition to vitamin and mineral deficiencies found. Things can, do and will get better. If you are seeing improvements after abx or after high fever, these should be good signs to watch for.

I really recommend getting to someone with a comprehensive knowledge of Pandas/Pans.....immune function that can test for and treat infections, vitamin and mineral deficiencies, gut issues, etc........it is a whole approach to healing.

 

I would ask....at 6 years old....when did he get his 60 month MMR booster??? How much after did the tics start???

 

Should you have any questions....please PM or reach out.

Share this post


Link to post
Share on other sites

Switch doctors. Syndeham's chorea is a well established illness accepted by mainstream medicine. It is also a major criteria for diagnosis of rheumatic fever. Rheumatic fever requires antibiotics til 18 or 21 depending on who you ask.

 

If your child did in fact have rheumatic fever, he needs to be on antibiotics til he is at least 18. I think you need a second opinion.

Share this post


Link to post
Share on other sites

Uh- isn't IVIG covered for Sydenham's chorea?

 

I would consider switching docs- but maybe don't be so fast to ditch the SC diagnosis. If you are diagnosed as pandas you likely will pay your own way for IVIG.

Share this post


Link to post
Share on other sites

just to second what Mom23boys says: it would be NEGLIGENT on the part of your dr not to put a child with Syndham's Chorea on abx. mention the word negligent and a law suit if he does not give you long term abx.

In your place, I would look into IVIG as well as dcmom suggests

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  



  • Announcements

    • Administrator



      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

      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
  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic
×