Night Terrors after IVIG

[MMC]

Our 11 yr old son had IVIG last week, 4/13 and 4/14. The 2nd day was rough and they stopped the treatment (1 gm/k) half way thru. He had fever, nauseau, and headache... symptoms were so bad they kept him overnight for observation.

 

While in the hospital that night he woke up in a terror-like nightmare state...heart rate was up to around 200. I was not there, but my wife gave me all the details of course. He eventually went back to sleep, then had two more similiar episodes, although not as severe. Good thing is, he remembered none of it.

 

All this would be a memory in the past, except he had one of these episodes last night (1 week after IVIG). I saw it this time...his eyes were huge and he had a terror gaze like somoene was coming at him with knife. Also made a lot of facial contortions, really strange looking...heart rate up high. It last about 4 minutes, and went back to sleep and thankfully did not have another one. Does not remember it. While he was in the hospital last week, they did an eeg on him. Doctor did not note anything too abornmal, but did say there was one blip that he could not explain. My wife called him back today to get his opinion.

 

Not sure if this is the IVIG doing this or what. At night, he takes all regular medication he has been on for a while...0.1 clonidine, 25 mg amitryptiline (for IBS), sometimes benadryl (had some last night) and also was on tylenol for the low grade fever. He is better today, fever is gone. We understand the fever and side effects from the IVIG but not the night terrors.

[KeithandElizabeth]

We definitely experienced the night terrors, but my son also had night terrors at some points during his worst PANDAS episodes. We also experienced symptoms that we had never experienced before, such as eye rolling tics, etc.... Dr. Kovacevic had prepared us for this and said that you may see brand new symptoms and/or old symptoms come back. He said that we could see this for 6-8 weeks.

 

I know that post IVIG can be very bumpy, but I try to think of it as major brain healing that is happening!

 

Elizabeth

Edited April 23, 2010 by KeithandElizabeth

[pixiesdaddy]

My gut instinct would be to say that ANY unusual neurological sign is a good one after IVIG - it means that something is happening regarding basal ganglia swelling.

 

We didn't have night terrors, but DD9's taste buds went through some weird shifts (things that had tasted good didn't, things that didn't taste good previously did) and other asst'd odds and ends in the immediate aftermath of IVIG.

 

The feedback we got from Dr. K at the time was any news is good news. If IVIG were truly ineffective, nothing much would be happening.

 

Hope that helps and encourages,

Pixiesdaddy