Home » After the IVIG to treat PANDAS

After the IVIG to treat PANDAS

So I thought I would write a quick note about symptoms of PANDAS after IVIG…long term.
I don’t believe it is a clear cut answer for everyone. At first, I hoped that we would get just one and be done….but that hasn’t been our experience. Everything didn’t just go away though after a few months he was a completely different, happy kid. The problem comes when he gets sick. After the first IVIG, he had a few illnesses and with each little cold or virus, he never climbed back up to where he was after the IVIG. Eventually, by three months thebtics were back…though no where near how bad they were to begin with.
After the second one in December 2010, the tics went away within a few weeks and have never returned. The third was to see if there was anything else we were missing. We have had a great year. Joshua is in a typical classroom in a small private setting.

I will relay our experience with strep this year. One Monday night, after school, Joshua became very emotional and difficult. I assumed he was tired and managed to get him in bed. The next morning he had a 20 minute meltdown over a small book his sister had. This was not your typical meltdown. I will spare the details but Manish amd I exchanged that “uh oh” look but I managed to get him in the car and to school. Later that morning, our pediatrician, whose son goes to our school, called and said her son tested positive for strep and he had been nowhere but school and we might want to increase our antibiotic dosage. I agreed and we increased from prophylactic dose to treatment dose. That evening, he went to bed pretty normally and then at 3 AM, he was standing by my bed. Those of you who have read the book know what this means. He told me that he had been wide awake in bed since he went to bed at 8. This is unusual because he normally always comes for melatonin if he can’t sleep which is about once every 2-3 months. He was anxious about going to school on no sleep. I told him he wouldn’t go and gave him a little bit of melatonin.

The next day we drove to the school to get his work for the day. Parents had been calling in. There was a strep outbreak at school with many children testing positive. He did not sleep for 2 days and had a little difficulty for about a week but then evrything became normal again. It was enough of an experience that I don’t want to know what will happen if he ever gets another strep infection. Just being around it affects him. He is now lovingly called ” strep radar”!

3 Responses to “After the IVIG to treat PANDAS”

  1. thalia says:

    Hi Lori. I read your book. I think our son was at where Joshua was
    around when you got your first IVIG maybe between last January and May. He had these crazy ticks and very difficult to control anger and migraines.He’s always had some problems,they diagnosed him with PDD-NOS when he was 3,but sort of with a shrug,they couldn’t think of anything closer.We chalked it up these ticks and behaviorto a brief stint on ritalin,but the symptoms persisted way after we stopped it.Coincidentally,one of his teachers that worked closely with him was very sick when all this started.
    things seemed to subside on there own,but all of a sudden in October
    the kid had full blown psychotic paranoia about spit and germs taking his imagination. I can’t see that the IVIG helped,it seemed to make him worse. We’re on our 4th week.Things are also being muddled with gabapentin and zoloft use.
    I’m thinking of stopping the zoloft all together to see how he’s actually doing.What were your timeframes for the IVIG’s?It sounds like the first one didn’t work for you either.

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