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Post-IVIG infections, decline


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Our two kids had IVIG Dec 2014. They gradually improved until about mid-February when they got sick with a cold virus. We gave steroids and they improved. They got coxsackie about 2 weeks ago (hand foot mouth sores) and after acyclovir they have been had some days that were better than ever and some days that were worse. Unfortunately the past week has had no good days - we are back to the fears, anxiety, potty/sexual talk, screaming, hyperactivity, fighting, tics, OCD. (Also we tried the methylation changes but there is too much variability in their day to day behavior to assess.)

 

We are confused and not able to put pieces together. Is this latent issues from two infections? They dont show any signs of allergies, but us parents notice something in ourselves. Also could they be reacting to someone else sick - my parents have been the source of both infections. As the ibuprofen has made little difference, we are considering using another round of steroids. Is that recommended and will there be any negative effects? Any other recommendations?

Edited by dasu
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since no one else with more experience with ivig is responding, I'll try. the question after ivig is if it works 6 months and a year out.

your kids are under attack of their auto-antibodies.

are exacerbations less bad than they were?

we did not do ivig, only abx. our kids improvement was very gradual. the exacerbations were slowly losing strength and we were seeing more time btw them, longish stable periods (with daily difficulties).

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Interesting point. We were told to wait until 4 months but also heard that in that window of time it was important to avoid exposure to strep or other infections. I thought that was the role of the steroids - at the risk of compromising immune function.

 

Each flare has gotten progressively worse for my son. My daughter had a massive onset and then from there each flare has been worse. The jury is out post IVIG. My son today remembered the time he attacked me with an axe and this evening told me that the thought of doing it again was bouncing around in his head. So I am hoping not go there - we had to put up all kinds of weapons ranging from knives and tools etc all the way to belts and candles he would like the throw.

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IVIG can take a year to do it's magic, however, you should see what is considered a transformation with few symptoms 4-12 week post. That being said, it is highly likely that your kids will still have flares. Flares ranging from a day or even a handful of weeks. The idea is that over time, the flares are less intense and the window between gets longer. My son had a HUGE 4 week flare about 3 months after IVIG and then nothing for 1 1/2 years. Steroids are not an answer. They are a bandage. They are typically a diagnostic tool showing the relationship between the symptoms and the autoimmune system/inflamation. Steroids shut down the immune system and bring about rapid reduction in inflammation. When you stop them however, the symptoms comes back very quickly. Are they on an increased dose of abx? If not, they should be.

 

My son just had a 2nd IVIG this week because after 1 1/2 years of doing well, after the flu, he flared for 8 weeks and noting worked. Dr. K says that this should do the trick and that only 1% of Pandas kids need a 3rd.

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My son had IVIG twice, 19 months apart. The first time, he had slow but steady improvement and it got him really well. It didn't last. He starred flaring again and everything slowly was creeping back. He caught pneumonia and fell apart, hence the second IVIG. It didn't work. IVIG is not permanent. It is not a cure. It's expensive, even if your insurance covers it. Ours did and it was still about 5k out of our pockets each time.

 

I would have better spent the money seeing a doctor that would test everything, then I would have known my son had Lyme disease and coinfections and that treating that would heal him to the point of living a very normal life. I do not believe he is back 100%. After a little more than five years of this, I am starting to accept that this disease will have a lasting effect on my son. It has changed him. He will never be the easy going, carefree little boy he was prior. When something this devastating strikes at age 5, I don't think there is any way it will not have some sort of permanent effect. That said, I have every hope he will live a perfectly typical life as an adult. He's doing well at age 11.

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We did see gradual improvement from 2-11 weeks post-IVIG although the last 2 of those weeks were erratic. They have been on Clindamycin since 2 weeks before IVIG and we were directed to use Clindamycin until symptoms resolve. I guess I am worried that an infection will negate the IVIG. Not true?

 

Both kids are back to not sleeping, violent rages, are fixated on violent talk and actions ("I cant go in that store someone will shoot me", "im going to slit your mouth off"), crying, yelling etc and likely generally housebound again. We havent had to restrain them again but I can see that coming. So its as bad as it ever was. Now as for duration, that remains to be seen.

 

Nicklemama, I really wish we would have done Lyme and coinfections testing before IVIG but they were not able to. We are planning on testing again via Igenex in a month when the IVIG wont falsely impact test results. When you state that "IVIG is not a cure" you mean its not a cure for Lyme/coinfection correct? I understand it can work when any infections are resolved yet PANDAS symptoms persist. It is sad to hear the story of your boy and the pain he (and you probably) has had to endure. PANDAS robs familys of so much.

Edited by dasu
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Its not a cure for PANS/PANDAS. There may be a few who had the one and done IVIG but they are in the minority. IVIG is a treatment when things are really tough. It can tamp things down, but not always. Sadly, I've just been around the PANDAS/PANS community for more than 5 years and curing it is a rare thing. Controlling, yes. I think those that catch it and treat it very early are more likely to having lasting results. That is not a message I wanted to hear 4 years ago, when we first learned of PANDAS. I have hope that continuing research will offer better treatment options. Things have already moved along on that front in the past 4 years. Our kids can't live in a bubble and they will go on to have infections that trigger PANS. As their immune systems mature and understanding of it advances, things get better. My son has been treated by two of the biggest names in PANDAS/PANS and they couldn't get him well. A little known, local doctor who is MAPS trained and is now an LLMD has done wonders.

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