MMC Posted September 15, 2013 Report Share Posted September 15, 2013 In the evenings, DS15 is prone to “spacing out” lately. Almost like a petit mal, absence type seizure that lasts several hours until falling asleep. We’ve seen this about 6 times in the past 2 months, last night’s was a bad one. We’ve seen this some in past since having PANDAS, but infrequently. Here is the timeline from yesterday, which is a good example of what happens… Day (Saturday) starts normally He helped mow the grass for about an hour, no complaints or problems Just before dinner or shortly thereafter, he got really quiet Sat and played video game Would not respond appropriately to questions Would not do normal chores, such as taking out trash Last night, he walked around house bouncing ball, up and down the hall Displayed some aggression by rubbing ball on the floor hard, then ripped it up Will sometimes throw cushions off the couch Then, “collapsed” on the couch, and watched tv, although its more of a blank stare If asked, are you ok?, all he can do is shrug shoulders, is non-verbal at this point Eyes look dilated, although they are typically dilated Eventually goes to sleep on couch Responds ok when waked to go to bed Next morning, complains of fatigue Today, it took until lunch time to appear normal with some energy, and come out of it Did not remember any details He has said in the past that he knew something was not right when he had an episode He has not been sick lately, but has tested positive for dust mite allergy. Someone suggested we monitor his glucose level, so we got a monitor a few weeks ago. Sugar levels have been between 103 to 135, without fasting. It was 110 last night. This is normal from what I understand. He has had one eeg in the past, which was normal. We see Dr Latimer on Friday, first time since summer of 2012. Some of our frustration with all of this is the lack of a local specialist who understands PANDAS / PANS, as most of you can identify with. What do you guys think, is this PANDAS / PANS related? Or something different that could be causing this PANS type reaction? I searched the PANDAS forum for seizures and read a few posts in the past. Each day, he struggles mainly with tics and some OCD. I could give a timeline of treatment, but rough draft… plasmapheresis, T&A, plasmapheresis again. One HD IVIG in the past (with bad side effects). He has also had Lyme treatment (no positive Lyme test), for nine months, a couple of years ago…many combos of Abx. Is typically on Augmentin or Pen VK, his ASO titers are not high. We’ve tried other things as well, all kinds of testing, methylation regulation, etc. He is definitively PANS per Dr L, as his symptoms increase after any bug or virus. Unlike our daughter who is PANDAS only, just bad after strep. Any thoughts and comments appreciated. Link to comment Share on other sites More sharing options...
JoyBop Posted September 15, 2013 Report Share Posted September 15, 2013 Sounds a little like a normal teenager but perhaps he should have a neurologist check him out to make sure he isn't really having some seizure like activity. My teenager (ninpandas) tends to shut us out sometimes and retreat to his own works as well. Link to comment Share on other sites More sharing options...
MMC Posted September 15, 2013 Author Report Share Posted September 15, 2013 Nope, JoyBop, this is not normal teenager stuff. I wish that's all it was...we can handle that. Thanks for your thoughts, though. Link to comment Share on other sites More sharing options...
JoyBop Posted September 15, 2013 Report Share Posted September 15, 2013 Is he depressed? Link to comment Share on other sites More sharing options...
qannie47 Posted September 16, 2013 Report Share Posted September 16, 2013 One of my ds symptoms is to be "out of it". Dr. K says that this is common. Its like your talking to them and they are not there, right? I have to verbally summon my ds several times to get his attention when this is going on during an episode. Yours sounds a little worse then what I experience though, I would check for seizure...struck me that he had been playing a video game while this was going on...they can cause them. Link to comment Share on other sites More sharing options...
MMC Posted September 17, 2013 Author Report Share Posted September 17, 2013 Right, qannie47, "out of it" is a good description and we too have to summon him verbally several times when this is happening. Which has been about every 2 weeks lately. It sounds like you have experienced this with your DS as well. We will ask Dr L about this on Friday. I don't think the video game causes it, b/c it starts before the game. Link to comment Share on other sites More sharing options...
colleenrn Posted September 17, 2013 Report Share Posted September 17, 2013 Can Dr L run an EEG on him? I think I would definitely rule out any seizure activity just to be safe. Colleen Link to comment Share on other sites More sharing options...
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