Jump to content
ACN Latitudes Forums

How long before we can expect to see improvement from steroid burst?

Recommended Posts


my 16 yr. old son has pans symptoms of verbal and motor tics, OCD, and some regression.  We recently tried high dose abx for 1 month and low dose Naltrexone but saw no improvement.  Now trying a steroid burst of prednisone 40 mg.tapering down for a month.  He has been taking it for a week with no visible improvement, in fact motor tics have escalated tho this may be due to weaning from risperidone a few weeks ago.  I feel we should be seeing some effect from the steroid by now if it's going to work.  This also worries me as Dr. says response will indicate efficacy of ivig for him in the future.  If there is no improvement with steroids does that rule out ivig?  Then what is left treatment wise?  I'm getting scared that we're at the end of helpful treatments and going to be forced back to psych meds to control tics, etc.  Help Help!  Worried mom!

Share this post

Link to post
Share on other sites

Hi July,

40 mg seems like it could be a bit low for a burst for a 16 y/o.  When I did my first steroid burst, it was 50 mg for five days, and I weighed 99 lbs.  I’ve also done steroid tapers, and those usually started at 60 mg.  Every one is different, though.

That first time I did a five-day burst, I saw improvement on the third day.  I’ve had other flares when it took a few days, and still others when I improved within a day on steroids.  There have also been a few when the steroids didn’t help at all, but that was when I had infections that I didn’t know about.

If there’s an active infection, it’s entirely possible that the steroids will either not work, or they’ll make him worse.  Have you looked into Lyme disease through Igenex testing yet?  It’s so important to treat Lyme if it’s there—otherwise, a lot of the PANS treatments won’t have their full effect.  Does he still have his tonsils/adenoids?  Infections can hide there, too, and antibiotics won’t reach them.

Share this post

Link to post
Share on other sites

When my son was in the midst of his most severe exacerbation he did steriod taper for 3 weeks starting at 35 mg.  It was about a month after the steroid taper ended (while still on Augmentin) that he began to improve.  When he finally did improve, the improvement was dramatic and led to a very long remission of symptoms.

Share this post

Link to post
Share on other sites

Perhaps dosage depends on weight. DD's first 2 blasts we saw increase and changes to her tics. Once the blasts were finished we saw greatly reduced symptoms.

Share this post

Link to post
Share on other sites
MC2    0

Our 10 year old son did oral steriods (60 mg for five days, then stopped cold) and we saw a small improvement on day 3, which went away as soon as we stopped. It was just a glimmer. We had also done 4 weeks of antibiotics by then. We then got high dose steriod infusions. That is when we saw real improvement (7 days post a 3 day infusion). I am no doctor, but it seems like what your 16 year old had may not be enough of a dosage to see much improvement....


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

  • 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


      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