rowansmom Posted March 20, 2008 Author Report Share Posted March 20, 2008 I would probably stay on the antibiotic, but, go with what you feel in your gut. Kelly I agree, thats what i felt was right, thanks for the moral support Link to comment Share on other sites More sharing options...
Hope Posted March 21, 2008 Report Share Posted March 21, 2008 My son's experience is different from your daughters but I wanted to send you some ((((HUGS)))). This journey is so hard. So glad to have this board to turn to! Hang in there! Link to comment Share on other sites More sharing options...
rowansmom Posted March 21, 2008 Author Report Share Posted March 21, 2008 My son's experience is different from your daughters but I wanted to send you some ((((HUGS)))).This journey is so hard. So glad to have this board to turn to! Hang in there! thank you hope, so much. Link to comment Share on other sites More sharing options...
P_Mom Posted March 21, 2008 Report Share Posted March 21, 2008 Nighttime difficulties, intrusive thoughts, nightmares, etc., are all classic symptoms of PANDAS. Link to comment Share on other sites More sharing options...
Calicat Posted March 21, 2008 Report Share Posted March 21, 2008 Kelly and Rowansmom, Maybe it's coincidence, but I have to wonder if my own "night visions" as I have always called them, may in some way be related to my daughter's tics. Mine ALWAYS take place at night, usually as I'm falling asleep or after I've been asleep for awhile and I wake up briefly. I "see" many things in my room; luckily none of them are too horrifying, but it's still scary for me sometimes. I see floating wine glasses, floating teddy bear, holes in the ceiling... whatever. Not in a dream, but most definitely in my room with my eyes open. Kelly, when you said "bugs on the wall", I nearly died! For years I have had a recurring "night vision" of a big orange spider that is always scurrying somewhere on my wall when I see it. I also walked in my sleep as a child. I have always had a large number of nightmares and very vivid, memorable dreams, too. Now that I take magnesium at night, most of this is MUCH better, although not completely gone. The teddy bear floated in front of my face last night. My daughter has had a few night terrors. She also does this weird thing where she's walking away from me, say going up the stairs, and I say one more thing to her, and she says, "Your voice scares me when I'm walking away!" I have no idea why. Calicat Link to comment Share on other sites More sharing options...
rowansmom Posted March 21, 2008 Author Report Share Posted March 21, 2008 Kelly and Rowansmom, Maybe it's coincidence, but I have to wonder if my own "night visions" as I have always called them, may in some way be related to my daughter's tics. Mine ALWAYS take place at night, usually as I'm falling asleep or after I've been asleep for awhile and I wake up briefly. I "see" many things in my room; luckily none of them are too horrifying, but it's still scary for me sometimes. I see floating wine glasses, floating teddy bear, holes in the ceiling... whatever. Not in a dream, but most definitely in my room with my eyes open. Kelly, when you said "bugs on the wall", I nearly died! For years I have had a recurring "night vision" of a big orange spider that is always scurrying somewhere on my wall when I see it. I also walked in my sleep as a child. I have always had a large number of nightmares and very vivid, memorable dreams, too. Now that I take magnesium at night, most of this is MUCH better, although not completely gone. The teddy bear floated in front of my face last night. My daughter has had a few night terrors. She also does this weird thing where she's walking away from me, say going up the stairs, and I say one more thing to her, and she says, "Your voice scares me when I'm walking away!" I have no idea why. Calicat i had them as a child/teenager too- it passed as i got older. rolandic epilepsy is hereditary btw. it makes me wonder if PANDAS is too... Link to comment Share on other sites More sharing options...
rowansmom Posted March 21, 2008 Author Report Share Posted March 21, 2008 Kelly and Rowansmom, Maybe it's coincidence, but I have to wonder if my own "night visions" as I have always called them, may in some way be related to my daughter's tics. Mine ALWAYS take place at night, usually as I'm falling asleep or after I've been asleep for awhile and I wake up briefly. I "see" many things in my room; luckily none of them are too horrifying, but it's still scary for me sometimes. I see floating wine glasses, floating teddy bear, holes in the ceiling... whatever. Not in a dream, but most definitely in my room with my eyes open. Kelly, when you said "bugs on the wall", I nearly died! For years I have had a recurring "night vision" of a big orange spider that is always scurrying somewhere on my wall when I see it. I also walked in my sleep as a child. I have always had a large number of nightmares and very vivid, memorable dreams, too. Now that I take magnesium at night, most of this is MUCH better, although not completely gone. The teddy bear floated in front of my face last night. My daughter has had a few night terrors. She also does this weird thing where she's walking away from me, say going up the stairs, and I say one more thing to her, and she says, "Your voice scares me when I'm walking away!" I have no idea why. Calicat as well- rowans big thing when shes having an episode is that sounds/voices/movement for her is very loud/fast and scary. even familiar people sometimes scare her. the neurologist said this is more related to the type of epilepsy she has. Link to comment Share on other sites More sharing options...
rowansmom Posted March 21, 2008 Author Report Share Posted March 21, 2008 Nighttime difficulties, intrusive thoughts, nightmares, etc., are all classic symptoms of PANDAS. is that right? i wondered... she has a sleep disorder- doesnt fall asleep for hours, wakes up often. it affects her attention in the daytime. Link to comment Share on other sites More sharing options...
P_Mom Posted March 21, 2008 Report Share Posted March 21, 2008 Calicat, How interesting, I can't say that it ever happened to me, but, my son often saw a big black ant in his room, also, these events occurred with his eyes open at night. Tracy, I believe that PANDAS definitely has a genetic component to it, atleast for me, there is no doubt. Link to comment Share on other sites More sharing options...
P_Mom Posted March 21, 2008 Report Share Posted March 21, 2008 Oh, Tracy, I forgot..my kids don't have sleep disorders, but, my younger son will talk in his sleep on occasion..it hasn't happened recently though..I think it is related to his episodes also. But, I do have a sleep disorder, the same as you daughter...it takes a bit for me to fall asleep, but, my biggest problem is that I wake up constantly...my Dad has this, too. Kelly Link to comment Share on other sites More sharing options...
P_Mom Posted March 21, 2008 Report Share Posted March 21, 2008 Darn, I always do this, I think of things after I post. Anyway, I just wanted to say that I believe the sleep stuff is also tied together with the PANDAS/tics/ocd stuff...I believe it is part of this "spectrum." Link to comment Share on other sites More sharing options...
Pandas_chicago Posted March 22, 2008 Report Share Posted March 22, 2008 Did anyone have an opinion on whether she should stay on the antibiotics even though the swab was negative? As a nurse my best practice says no, but I would like to know other's opinion on this. Hi Tracy - My Son 9 was diagnosed 2 years ago - our doctor - "Dr. K" - of Chicago Suburb - told me that Pandas has been known and can flare up with a virual or URI. In addition my son is on a daily preventative antibiotic - in clincial studies (Pandas) it has been proven the number of relaspes were significantly reduced by this. We are on Cephalexin - this antibiotic has also had clinical results showing high success rates . Link to comment Share on other sites More sharing options...
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