JAG10

IVIG/Nausea/Vomiting phenomena

7 posts in this topic

IVIG #1 occurred May 25-26, 2010. DD had the massive headache and some nausea after day two, then was fine when she woke up the next day. 24 days later, she spiked a mild fever and vomited once, then was fine again. This specific symptom of mild fever spike, single occurrence of vomiting and then completely fine happened again 5 weeks later, then 4 weeks later then stopped.

 

IVIG #2 occurred Feb 2-3, 2011. 24 days later, this past Saturday, she had a very slight elevation in temp (99.5) and nausea (but no vomit); it lasted about 2 hours, then POOF she's completely fine again and playing softball.

 

The exact same number of days later????? Pretty freaky, huh? She's doing great, by the way :wub:

Share this post


Link to post
Share on other sites

I'm so glad she is doing great! :-)

 

We are in the middle of our 1st IVIG, it is these side effects I think I am most scared off....good to hear you got through them okay.

Share this post


Link to post
Share on other sites

I have to wonder about people that don't have pandas and get ivig - do they get this side effect?

 

My son had the migraine, and horrible vomiting. We just switched anitbiotics...and 3 days after antibirotic switch - vomiting. Not normal vomiting, like getting something out of his system (by the way, no one has any stomach bugs) it was exactly like ivig - every hour almost on the hour for 5-6 hours. Also, it occurred 3 days after the ivig. He also had a headache. Neither the vomiting nor the headache were as bad as after ivig. He never gets headaches. And like I said, no one was sick, so REALLY don't think it was a stomache bug.

 

I'm now convinced it is a herx - a die off off of certain bacteria that produce toxins when they die - not a reaction to the ivig. My son has mycoplasma, which, like lyme disease, is known to cause herxing during treatment. since about 15%(?) of pandas kids get this reaction, I wonder if these are kids with underlying infections that produce herx response. Its actaully a good sign (killing the stuff off) but ivig might not completely get rid of it.

 

As for the cycles - I have read on lyme board that certain co-infection in lyme is VERY cyclic (forget which one)...and I think the cycle is every 24 days. You'd have to check the lyme board information (or just google it) to confirm.

 

Glad to hear she is doing well!

Share this post


Link to post
Share on other sites

Alright, this question may demonstrate the extent of my ignorance, but we're all friends, right? B)

 

The 24 days was from ivig to first episode (this is the one that is exactly the same thus far), then 5 weeks, then 4weeks (I'm sure, I have the dates written down)

 

It (nausea/vomiting/mild fever) is diminshing over time........... this past time, she felt some very brief nausea, but never vomited (I would've thought /die off/herx/whatever would last longer than an hour or two, no?) Could it be cell memory? Like nothing is actually dieing off but there is a memory of past die-off occuring in a cyclical fashion? She never had Lyme, but did have elevated myco-p which months of zith & biaxin, aug. took care of....but maybe there is a fading memory?

 

Well, if it is possible I'm sure glad it is diminishing cause we'd like all those destructive b-cell, t-cell memories to be wiped out and never heard from again!!!!

Amen!!!

Edited by JAG10

Share this post


Link to post
Share on other sites

My ds10 is currently being treated for Lyme and PANDAS. He has had a total of 4 IVIGs. His first IVIG, he got sick with nausea and a headache two hours into it. That migraine and vomiting lasted for 6 days. The Dr. said that was very unusual and thought that it was probably a stomach bug. IVIG #2 he got a migraine and vomiting on day 3 and it lasted for about three days. IVIG #3, migraine and vomiting on day 6, lasted for about 12 hours. IVIG #4, no migraine or vomiting.

 

Like you norcalmom, I’m thinking the migraine and vomiting might be a herx. The further he is into treatment the less herxing?

Share this post


Link to post
Share on other sites

Jag10.

 

Our dd 12 had IVIg #1 just after your dd, June 14-15, 2010. She is scheduled for IVIg #2 March 17/18, 2011. I will observe for patterns.

 

May I ask, did your dd have symtpoms/turning back pages post IVIg #1?

 

Mary

from Michigan

Share this post


Link to post
Share on other sites

Hi Mary,

 

I would say mildly. I saw more of that "turning back pages", herx, seeing symptoms you haven't seen in awhile....that mostly occurred during her abx treatment prior to IVIG which was amox., zith, then biaxin collectively for a total of 4+ months. She was an elevated myco-p girl in addition to the high ASO and sky high anti-DNAse B (but no known history of strep) I really think she was in a good place "infection wise" prior to IVIG #1 and that is a contributing factor to why she did so well. She had a string of infectious exposures this fall which interrupted and stalled her progress, one right after another. Abx protocol was too weak, IMO. By the end of Nov, 2010 she was back on daily HD zith. Again, I think this put her in a good place to receive IVIG #2 and thus far very mild uptick in symptoms, a little hyper activity but cognitive clarity with it so...no complaints here!

 

I feel like she is in a great spot now and we want to get that IgG up. She is having another treatment 3/30-3I. I'm pondering a plan for late Aug-Oct, that seems to be her trouble zone....Will HD zith do it? Perhaps she can be on lower (proph) dose earlier in the summer then boost it up in mid-Aug? Her lil sis brought home strep in Aug; dd11 never swabs positive.

 

May I ask....and I realize it is hard to tell with treatments in the mix as well, do you notice any differences with puberty onset? No menses with mine yet, but all the other early puberty signs are there.

I'm praying we will create the perfect antidote of immuno-modulating therapy, abx protections and puberty to extinguish what the perfect storm set into motion so many years ago.

 

Let's pray it!

Jill

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



      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   21 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