Johnsmom

underlying infectiion and IVIG

8 posts in this topic

Is it a waste of money to have HD IVIG treatment when there is an underlying infection? DS10 has a constant rise in ASO titers but no rise in anything else. His last HD IVIG was in December. We saw some good results about 3 months after but then he slipped. I upped his abx dosage but that has not helped. Will someone please chime in whether or not another HD will help?

 

thanks

johnsmom

Share this post


Link to post
Share on other sites

This is an AWESOME question. I think for a lot of kids, part of the problem is they can't kick the infection in the current state of their immune system. However, I have been wondering myself how effective it would be say, if there are other issues, i.e. methylation, lyme, vitamin deficiencies, etc.

I am thinking that for us, IVIG will be what we aim for after we sort out all the other things we can - try to get my son as healthy as possible from all other angles and then shoot for IVIG if we still need it.

Share this post


Link to post
Share on other sites

I think it depends on the child. Have you had your child tested for strep antibodies? Do they have any? If there are no antibodies, then IVIg will definitely help. Also, an immune system that is not fighting strep all the time, can turn it's attention to getting rid of anything else in the body that doesn't belong.

 

Also, does your child have IGg deficiencies? If so, then another round of IVIg will help.

 

IVIg is not a magic bullet. It gives your child something they are lacking. When you can figure out what that is, you will know if another round will help or not.

 

Cobbie

Share this post


Link to post
Share on other sites

For our ds, IVIG alone didn't last until we got the right dose of the right abx ("Saving Sammy" dose of augmentin XR). In our case, we later found that our entire family had elevated ASO, so the problem may have been that he was always re-exposed after IVIG. (We did 3 rounds with Dr. K.)

 

So - based on our experience - I think it's crucial to find the right dose of the right abx for your child, then go for IVIG as the "big gun" to get the autoimmune response under control. That gives your child the best chance to avoid re-infection and maintain their gains.

 

Others' experiences may be very different. Just one opinion, for what it's worth!

Share this post


Link to post
Share on other sites

Thanks worried Dad.

 

How spaced apart were your sons IVIG's with dr k? We have been to him twice. The first dose was in June of 2010 and our son had about 2 good weeks after month 3. Then we decided to go the monthly route with another dr. We started too low and never got DS up to 1.5. We decided to go back to Dr K in Dec 2011. DS was really good after IVIG but that I attribute to the Solumedrol. Then it was up and down for 4 months until a few weeks back when DS started doing really well. Luckily Dr k was able to see him and told us to up abx when we suspected re-exposure. He also said he would get us in immediatly if he slipped. Im afraid that has already happened. :( I had to increase his abx a week and a half ago and we haven't seen much improvment. DS was on regular Augmentin after the first hd IVIG but Zithromax always seemed to work the best for him. DS always has elevated ASO but never has elevated anti DNase and dh has had elevated anti DNase on several occasions.. I'm waiting to hear back from Dr K. He usually answers right away but I have not heard for him yet.

Again, how spaced apart were your sons IVIG's ?

 

Thanks!

 

 

For our ds, IVIG alone didn't last until we got the right dose of the right abx ("Saving Sammy" dose of augmentin XR). In our case, we later found that our entire family had elevated ASO, so the problem may have been that he was always re-exposed after IVIG. (We did 3 rounds with Dr. K.)

 

So - based on our experience - I think it's crucial to find the right dose of the right abx for your child, then go for IVIG as the "big gun" to get the autoimmune response under control. That gives your child the best chance to avoid re-infection and maintain their gains.

 

Others' experiences may be very different. Just one opinion, for what it's worth!

Share this post


Link to post
Share on other sites

Worried dad, a question for you! So how do you know if you've found the right antibiotic at the right dose - relief from symptoms? In which case ivig may not be necessary?! We're persuing ivig because the antibiotics are not working. I'm hoping we've eliminated the source of infection after removing infected Ts & As and now the ivig will take care of the circulating antibiodies that resulted from that. For future flare-ups I'd imagine a broad spectrum antibiotic is best (which augmentin is) to cover for a many infections as possible and treat immediately upon exposure, am I right??

Share this post


Link to post
Share on other sites

I have been thinking about this post for a while. I think all I can do is to share my experience and insights in my son's case. This may or may not apply to others. I am still trying to understand the ins and outs of it all.

 

I think the reason we may not know the answer for sure is that IF you have returned to normal with antibiotics then you aren't pursuing IVIG and then if you don't get results (or lasting results) with IVIG there are so many factors that may be contributing:

 

1- How long your child had antibodies circulating before they got treatment? My son only had a 10 day course of amoxicillin then had to wait 3 months before IVIG. How long had he had strep throat or how many times this was going on is so unclear in his case since he has other developmental issues.

 

2- Is it that the current antibiotic hasn't effectively treated the infection that lead to PANDAS or are there other infections? My son is on pen vk and it wasn't until we used a mega antibiotic (rifampin), even after 7 IVIGs, that he returned 100% to baseline. Was the strep not controlled? Did he have other infections? We don't know because we didn't test for them (and now the tests would be unreliable due to IVIG). We just did IVIG #8 after rifampin and we will see if that cleared enough of whatever infection it killed off to allow the IVIG to hold this time. If not we will fight for stronger prophylactic antibiotic.

 

3- Is the infection hiding somewhere and that is why you can't get at it with the antibiotics? Thus the reason we removed his tonsils and adenoids. You can search on here regarding intracellular strep.

 

4-Is he constantly being re-exposed or infected by someone in his life? Well we cultured the entire family and cultured and treated the dog to be safe. He is not going to school anymore. Short of a bubble what else can you do?

 

5-Is the body still building antibodies that are attacking the brain because the BBB is left open? Even once we rid the body of infection, the antibodies seem to continue to attack the brain since it is always there. I have no idea what to do about that one. My understanding is that even with PEX if you remove the antibodies the B cells have a memory and will just start manufacturing antibodies again. Obviously this doesn't always happen or PEX wouldn't be successful. Again, I'm not expert this is just my understanding of what I've read and been told. So, what if we kill off the B cells with chemo drugs? I know, sounds drastic and scary, but sometimes life turns drastic and scary.

 

So with all those factors and options, do I think IVIG is a waste if there is an ongoing infection? It seems to me that IVIG is almost diagnostic in its usefulness because if it works and holds, then you have your answer as to whether there were any other contributing factors. You never know if you are going to be the one to win the big prize of one and done. You can eliminate as many of the potential antagonists to IVIG success above and guess the likelihood of success if your child wasn't affected long before treatment or neurotypical before it hit him/her. All I can say is it seems in my son's case he had all of this stacked against him and he still gets a benefit from the IVIGs, and now even more from strong antibiotics. The effects just haven't lasted longer than 21 days so far. Do I think it is a waste to get to see him well for the time it does last? Not me, but I'm not like most people and he isn't like most cases. It will be one year next month and if we don't see results that hold by the next IVIG or, as needed a new antibiotic, I think a different route is in order.

 

I hope you find your answer on the quickest path to recovery with the least amount of resistance. You just never know ahead of time what all it will take to get your child back. If I knew then what I know now I would have done more testing at least to see what other infections we could potentially be fighting in addition to the strep, but I don't regret pursuing any and all treatment options. During this treatment we have seen aspects of his development that were delayed completely normalize and that is worth everything.

Share this post


Link to post
Share on other sites

As DD's neurologist explained it to us, IVIg neutralizes the auto-antibodies, and to help quell the autoimmune damage. If there is still an infection present, then that needs to be treated as well, so I doesn't fuel the autoimmunity.

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   30 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