ip_s Posted December 17, 2009 Report Posted December 17, 2009 My son is about 5 weeks into what we consider a severe PANDAS episode...started by either a strep in late Oct. or two flu shots (seasonal and H1N1). Our most difficult issue is OCD - all thoughts with the need to tell. We are working on this with a CBT therapist, and he is on Zoloft (just started two weeks ago, first time every). His teacher (she is wonderful) reports that he is making it through the day but is beyond hyper...can't settle in, always wants to go somewhere, does need to go to the batheroom a lot, etc. In 1st grade during his 2nd episode, the same was true and then just subsided with the OCD until all gone. Do other children act hyper?
P_Mom Posted December 17, 2009 Report Posted December 17, 2009 I am sure you have read here that SSRI meds. (Zoloft, etc.) tend to make PANDAS kids worse. I would really look into that one. Is your son on antibiotics...if not, that is what he needs to be on...long term. And, perhaps a steroid burst would be needed now given the several immune system challenges he has had in a few short months. Some PANDAS kids present with ADHD type symptoms during episode...my son was bouncing off the walls during his, so, yes....it is common for PANDAS kids to be hyper.....and to also squirm around like they have ants in their pants. Hope this helps. Kelly
pandas2boys Posted December 17, 2009 Report Posted December 17, 2009 My son is about 5 weeks into what we consider a severe PANDAS episode...started by either a strep in late Oct. or two flu shots (seasonal and H1N1). Our most difficult issue is OCD - all thoughts with the need to tell. We are working on this with a CBT therapist, and he is on Zoloft (just started two weeks ago, first time every). His teacher (she is wonderful) reports that he is making it through the day but is beyond hyper...can't settle in, always wants to go somewhere, does need to go to the batheroom a lot, etc. In 1st grade during his 2nd episode, the same was true and then just subsided with the OCD until all gone. Do other children act hyper? "Hyper" is putting it mildly. Me and my wife almost have to were earplugs to keep our sanity from all the shouting and yelling and havoc that our pandas kids create for us daily. I mean, they fight over every stupid little thing. If one sibling got an extra jelly bean, my pandas son is on the floor kicking and screaming.
Suzan Posted December 17, 2009 Report Posted December 17, 2009 "Hyper" is putting it mildly. Me and my wife almost have to were earplugs to keep our sanity from all the shouting and yelling and havoc that our pandas kids create for us daily. I mean, they fight over every stupid little thing. If one sibling got an extra jelly bean, my pandas son is on the floor kicking and screaming. LOL, oh yeah the "he/she got one more jelly bean than me" syndrome! We got that here too! Yes, my children are hyper! Before I knew about PANDAS, I considered ADHD and just assumed they were very active kids. I have allowed balance beam activity on the back of our couch because it kept them entertained and active! I never thought I would be that kind of mom! Susan
peglem Posted December 17, 2009 Report Posted December 17, 2009 I have allowed balance beam activity on the back of our couch because it kept them entertained and active! Nodding my head and smiling! Anything to get a few moments of peace!
ajcire Posted December 17, 2009 Report Posted December 17, 2009 YES! Exactly... the exact same stuff is going on here between my kids and it breaks my heart to see them constantly at each other. In fact if I had to pick one thing about all this that is putting me over the edge I would say it is the way my kids interact with each other. I know siblings fight but I really feel this is just excessive and over the top. "Hyper" is putting it mildly. Me and my wife almost have to were earplugs to keep our sanity from all the shouting and yelling and havoc that our pandas kids create for us daily. I mean, they fight over every stupid little thing. If one sibling got an extra jelly bean, my pandas son is on the floor kicking and screaming. LOL, oh yeah the "he/she got one more jelly bean than me" syndrome! We got that here too! Yes, my children are hyper! Before I knew about PANDAS, I considered ADHD and just assumed they were very active kids. I have allowed balance beam activity on the back of our couch because it kept them entertained and active! I never thought I would be that kind of mom! Susan
mom md Posted December 17, 2009 Report Posted December 17, 2009 Absolutely. Before we were diagnosed two very good psychologists gave us the ADHD diagnosis. I never bought it and kept going to different doctors to see who would finally figure it out. We tried the stimulants for ADHD and of course they make things worse.
peglem Posted December 18, 2009 Report Posted December 18, 2009 Speaking of hyperactivity, just this evening...after a few ragey episodes...Allie suddenly turned happy....TOO happy, manic happy-screeches and wild. insane laughter/giggling. Running frantically from the computer, down the hallway, jumping on my bed-then back to the computer (like her tail is on fire) and she's been doing this for 2 hours straight and it doesn't look like its going to end anytime soon. I'm so exhausted...I'm just letting her. I don't think I could stop her anyhow. At least its the happy type mania. Praying she sleeps tonight.
tantrums Posted December 18, 2009 Report Posted December 18, 2009 Oh YES YES YES!!! My DH and I can rarely even finish a sentence before DS is interrupting with senseless chatter. And he cannot wait! Can't wait for anything, not just to speak. Runs non stop, can't sit on a chair to save his life - he literally falls off a chair while eating dinner!
Amy B Posted December 18, 2009 Report Posted December 18, 2009 Our Ds is the same way. The neurologist says he is "consistent with ADHD". WE thought this years back for obvious reasons. He cannot sit still unless watching TV. He will then not actually be still but quiet. His 1st grade teacher says he has a tough time and gets frustrated easily and always wants to go the bathroom or out to the hallway etc. Anything to get out of the quiet classroom. When he was younger in the early intervention they would put the waited vest on him because he was bouncing off the walls and that would slow him down a bit. Now we are on the clonodine. I don't know how I feel about that good bad or effective just yet.
Suzan Posted December 18, 2009 Report Posted December 18, 2009 he literally falls off a chair while eating dinner! LOL! This is my dd8!! You will be talking to her and she falls out of her chair! She prefers to eat standing up or walking around (or sitting on the floor in front of the TV). Susan
mom md Posted December 18, 2009 Report Posted December 18, 2009 We tried clonidine. I do not think it made a difference. My son can't sit either. He works at school standing and wanders around by the dinner table while he eats. He literally can not stay seated. He falls out of his chair too.
forjpj Posted December 20, 2009 Report Posted December 20, 2009 My son literally climbs the walls every night. I purchased him an "Iron-Gym" last year for his b-day to get rid of extra energy...little did I know then how helpful it would become. It is a pull-up bar that hooks on the door. He can get on that and swing all he wants. It takes some getting used to...watching him swinging through the air...just pray the trim on the door doesn't break...for his sake. It is amazing what you can learn to tolerate. I absolutely agree, the hyperactivity is extremely difficult. I can handle turning on the sink on for him all day and carrying him around when he gets "stuck" walking, but that constant high-energy movement is rough. Somebody else, mentioned sleeping...I also got him a papasan chair for an early Christmas present. It has become a great alternative to the bed, making it a little easier to get him to slow down and go to sleep.
MomWithOCDSon Posted December 20, 2009 Report Posted December 20, 2009 My son literally climbs the walls every night. I purchased him an "Iron-Gym" last year for his b-day to get rid of extra energy...little did I know then how helpful it would become. It is a pull-up bar that hooks on the door. He can get on that and swing all he wants. It takes some getting used to...watching him swinging through the air...just pray the trim on the door doesn't break...for his sake. It is amazing what you can learn to tolerate. I absolutely agree, the hyperactivity is extremely difficult. I can handle turning on the sink on for him all day and carrying him around when he gets "stuck" walking, but that constant high-energy movement is rough. Somebody else, mentioned sleeping...I also got him a papasan chair for an early Christmas present. It has become a great alternative to the bed, making it a little easier to get him to slow down and go to sleep. We got our son a papasan chair recently, too, basically in the midst of this latest exacerbation. I think there must be something about its "womb-like" design, as it has become his "safe place," a spot where he can go to chill out when he's stressed out and agitated. And he frequently falls asleep in it, also. I wish we'd gotten him one years ago!
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