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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBook?  Our helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 

 


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underlying infectiion and IVIG


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#1 Johnsmom

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Posted 23 April 2012 - 08:58 AM

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


#2 fightingmom

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Posted 23 April 2012 - 10:35 AM

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.

#3 cobbiemommy

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Posted 23 April 2012 - 12:23 PM

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

#4 worried_dad

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Posted 23 April 2012 - 01:55 PM

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!

#5 Johnsmom

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Posted 23 April 2012 - 06:30 PM

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!



#6 Kiera

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Posted 24 April 2012 - 07:53 AM

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??

#7 twoplusone

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Posted 02 May 2012 - 09:35 AM

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.

#8 orion

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Posted 02 May 2012 - 11:30 AM

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.




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