IVIG while in remission?

[butterflymom]

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Edited October 5, 2015 by tampicc

[nevergiveup]

Tampicc,

According to DR K ivig "could" fix him in a lasting way. And for the person who says ivig has serious risks, I would strongly disagree, for children the risks are very very small, you have a much riskier situation everytime you put your children in a car or give steroids. I would get all your ducks in a row right now, have an ent consult for the sinus issue, chronic sinusitis need long term abx like cefdinir or augmentin, this may help eleviate further panda relapses. Also, have you run the cunningham test, this is also a good test to run if you are running the igenex test. It does not sound like you have a pandas doc, I would get one on board now so you are comfortable that you have someone making the right decisions for you. Short term steroids may also help right now, instead of ivig. Speaking though from a mother who waited, abx for years, months of steroids for more years, one ivig, and now monthly ivig, if I could have done it all over again, And with what I know about ivig now, I would have treated her much earlier and much younger. Kids do better when treated earlier. Some do fine treated later, if it is first onset, but the longer your child is producing antibodies that are causing pandas, the harder it will be to turn them off. Maybe the cunningham test could shed some light on whether or not your child has very high antibrain antibodies and this may help you decide whether or not he is in remission or not. When my dd was admitted to the hospital in a psychosis at age 7, it got better fast, and I was so thrilled to see her improving, I just wanted to enjoy our time together and the docs gave me no direction anyway, ivig was never mentioned. No one understood this disease at that time. You have a wealth of info now, so I would sit tight for now, check for sinusitis, see a pandas expert, have all immune stuff tested and maybe get a steroid burst to see if you can get to 100 percent. Next relapse, which I hope never happens, I would get the ivig, maybe more than one, especially if it looks like SC, swedo's study shows three ivigs use

d for SC.

[norcalmom]

I agree with nvergiveup - I would consider getting cunningham tests done at baseline, and in addition, you might consider a full assessment of IQ function (if you can) by a psychologist that knows disabilites, to see if something might be going on you can't see. Its hard to tell with is normal for 5 year olds vs what is not..because they all have "phases" they go thru, but this helped us. (sone was 10).

 

We did ivig at baseline (indeed he was doing better than he had been for a long while) but seemed that after each exacerbation his baseline would creep up a bit. And, as nevergiveup mentioned - get all the ducks in a row to do ivig if it happens again.

 

The benefit of doing it not in exacerbation is - its oooo much less stressful, and Dr K said that we probably wouldn't see "flipping of the pages" any more severe than the baseline symptoms we were seeing the week before we had it done (which was true - they were different, but not more extreme, and short in duration) (except bedwetting - did that for 3 weeks straight - telling me something was going on in that part of his brain! he only did this just before or during exacerbation previously).

 

So, I'd second nevergiveup's opinion - I'd treat as aggressively as possible, and as early as possible. And get the C test - at least yo will then have a baseline to compare to. And, personally, if the C tests come back in normal range - I'd be very comfortable not doing ivig, so that might be a way for you to feel better about your decision.

 

I also have this paranoia that ivig might become even more difficult to get. I think its getting easier, but with so few pandas doc out there what if a couple of them retired, moved to Europe, passed away...or decided not to treat pandas kids anymore? Also, you never know what goes on behind the scenes and how policies/politics are affected. What if a study is done on a drug that can control the symptoms, but isn't as good as ivig...but becomes recommended treatment...OK..I'm paranoid.

 

Here is a link to what we found in my DS's assessment, one of the reasons I decided to move forward with ivig.

 

http://www.latitudes.org/forums/index.php?showtopic=8897&st=0&p=74035&fromsearch=1entry74035

[butterflymom]

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Edited October 5, 2015 by tampicc