Kim B Posted August 19, 2011 Report Posted August 19, 2011 If you have a moment and are familiar with tics, can you take a glance and give me any feedback? This has been going on for 2 weeks, we do have an appt with a neurologist in 2 weeks but the waiting is killing me!
momaine Posted August 19, 2011 Report Posted August 19, 2011 My dd's tics were much more subtle, (more of a grimmace and a tsk vocal tic) but if I had to guess, I would say, yes, that is a tic. She doesn't look aware that she is even doing it. She seems focused on the TV or something. I realize that this is the Tourette's forum, but I want you to be aware that sometimes tics are caused by PANDAS (from Strep), PITAND (other infection), or Lyme Disease and its co-infections. You may want to think about any other symptoms or exposure possibilities that might relate to one of these infectious causes. It would be a good thing to rule out. Lymne Literate doctors are good at finding these infections. My dd started with OCD and eventually had vocal and motor tics. She was initially diagnosed with PANDAS then after a year of treatment that didn't get her where I felt she should be, we pursued the possibility of LYme. She is now doing very well on Lyme treatment. Best of luck to you Your dd is beautiful btw.
Chemar Posted August 19, 2011 Report Posted August 19, 2011 Hi and welcome yes it does look like a tic. You say this has only been present for the past two weeks? No other tics (movements or sounds) before? Has anything changed in your daughters diet? Environment? New school? house?carpeting?woodwork? etc anything? Any recent illness? Stress? Immunizations? Any family history of tics and/or Tourette? all these can trigger tics so that is a good place to start...
Kim B Posted August 20, 2011 Author Report Posted August 20, 2011 Thank you for the input, both of you- it really helps to have some perspective, I think my greatest fear is that there's something we need to act on right away but we have to wait to see the neurologist for a few more weeks. I have seen some information about PANDAS/PITAND and am trying to understand it all better. I honestly don't know if the neurologist I was assigned to is knowledgeable in that area or not, I just got his name yesterday. I'll try to go in prepared, I've been keeping a detailed log of her activity thus far. HEr only possible exposure to Lyme might have been during a trip to Alaska last month, but my understanding is that ticks there don't carry Lyme. I'll definitely bring it up with the PN though. This is out of the blue, sudden onset, she's having small tics 300-500 times a day with the longer ones happening more frequently as time goes on. The one in the video was an example of one of her longer episodes. In retrospect, I do believe there might have been a few behaviors over the last year that we attributed to normal childhood annoying habits...clicking in the back of her throat and whistling incessantly. Those each lasted about a month. Didn't even dawn on us at the time that it might be something more. No major change in diet, environment, illness, no recent immunizations and no family history. Yes to a new school, but she's taken it in stride....I do know that stress of that could affect her, but the tics did start before school was imminent...before she even really knew it was happening, actually. She changed school due to my taking a leave from work for a year to stay home with the kiddos, it wasn't due to a move or anything. School started this week. I guess she's actually been having tics for 3 weeks now, it's been almost a week since we got our referral and at that point it was two weeks. I'm also taking into consideration some type of allergen...though she's had no change in her diet, possibly she reached some kind of threshold in being able to tolerate something such a gluten or food coloring. Thank you so much for your thoughts, this is a whole new world to me...
lmcgill Posted August 21, 2011 Report Posted August 21, 2011 Thank you for the input, both of you- it really helps to have some perspective, I think my greatest fear is that there's something we need to act on right away but we have to wait to see the neurologist for a few more weeks. I have seen some information about PANDAS/PITAND and am trying to understand it all better. I honestly don't know if the neurologist I was assigned to is knowledgeable in that area or not, I just got his name yesterday. I'll try to go in prepared, I've been keeping a detailed log of her activity thus far. HEr only possible exposure to Lyme might have been during a trip to Alaska last month, but my understanding is that ticks there don't carry Lyme. I'll definitely bring it up with the PN though. This is out of the blue, sudden onset, she's having small tics 300-500 times a day with the longer ones happening more frequently as time goes on. The one in the video was an example of one of her longer episodes. In retrospect, I do believe there might have been a few behaviors over the last year that we attributed to normal childhood annoying habits...clicking in the back of her throat and whistling incessantly. Those each lasted about a month. Didn't even dawn on us at the time that it might be something more. No major change in diet, environment, illness, no recent immunizations and no family history. Yes to a new school, but she's taken it in stride....I do know that stress of that could affect her, but the tics did start before school was imminent...before she even really knew it was happening, actually. She changed school due to my taking a leave from work for a year to stay home with the kiddos, it wasn't due to a move or anything. School started this week. I guess she's actually been having tics for 3 weeks now, it's been almost a week since we got our referral and at that point it was two weeks. I'm also taking into consideration some type of allergen...though she's had no change in her diet, possibly she reached some kind of threshold in being able to tolerate something such a gluten or food coloring. Thank you so much for your thoughts, this is a whole new world to me...
lmcgill Posted August 21, 2011 Report Posted August 21, 2011 Thank you for the input, both of you- it really helps to have some perspective, I think my greatest fear is that there's something we need to act on right away but we have to wait to see the neurologist for a few more weeks. I have seen some information about PANDAS/PITAND and am trying to understand it all better. I honestly don't know if the neurologist I was assigned to is knowledgeable in that area or not, I just got his name yesterday. I'll try to go in prepared, I've been keeping a detailed log of her activity thus far. HEr only possible exposure to Lyme might have been during a trip to Alaska last month, but my understanding is that ticks there don't carry Lyme. I'll definitely bring it up with the PN though. This is out of the blue, sudden onset, she's having small tics 300-500 times a day with the longer ones happening more frequently as time goes on. The one in the video was an example of one of her longer episodes. In retrospect, I do believe there might have been a few behaviors over the last year that we attributed to normal childhood annoying habits...clicking in the back of her throat and whistling incessantly. Those each lasted about a month. Didn't even dawn on us at the time that it might be something more. No major change in diet, environment, illness, no recent immunizations and no family history. Yes to a new school, but she's taken it in stride....I do know that stress of that could affect her, but the tics did start before school was imminent...before she even really knew it was happening, actually. She changed school due to my taking a leave from work for a year to stay home with the kiddos, it wasn't due to a move or anything. School started this week. I guess she's actually been having tics for 3 weeks now, it's been almost a week since we got our referral and at that point it was two weeks. I'm also taking into consideration some type of allergen...though she's had no change in her diet, possibly she reached some kind of threshold in being able to tolerate something such a gluten or food coloring. Thank you so much for your thoughts, this is a whole new world to me... If I could back about 3 years or so I would love to have someone tell me," if you don't stop obsessing with (insert child's name's) tics you will lose out on a big portion of the really good parts of that child's life!" Yes, they are tics and yes you will figure it out, and yes they will stop eventually. Our son is now 12 and he has doing great. We figured out what was the main cause, like you we have no history of family tics. He needs to be gluten free and we limit the games and TV he watches. Sometimes I wonder if he has just grown out of them, but like you I was scared, depressed, and obsessed about his tics. What a waste, he was doing fine, I was the one that needed help. Just love her as much as you can and relax and know that it will end. Maybe it will take some time, but it will end.
Kim B Posted August 22, 2011 Author Report Posted August 22, 2011 Amen to that, I have to keep reminding myself that there is a good chance that this is simply tics...and nothing more. If it is, we are more than okay with that- and I think your advice to spend less time dwelling on it is wise. I think once we officially rule out some of the scarier things that can cause tics we will try some dietary modifications and then continue living life. Thank you for the reminder- and enjoy your son...it sounds like he has some fantastic parents supporting him. =)
jdmom Posted August 26, 2011 Report Posted August 26, 2011 I too think it's a tic. My son tics the most when watching TV. I don't know what happens with the brain chemistry during TV time but that is when it's the worst.
mommyfor4 Posted August 29, 2011 Report Posted August 29, 2011 It does appear to be a tic and we also find the TV is a big trigger and try to keep it limited. She also has the same look in her eyes as when my son watches TV, it's like they are totally absorbed with it, wide eyed and unaware of other things around them. I wish you the best, hang in there... Megan
Hope36 Posted August 14, 2017 Report Posted August 14, 2017 Hi Kim B. I'm sort of I the same boat as you were 6 years ago. Not sure if you'll see this post but I guess i'm that worried anxious mom now.. Was wondering how your daughter continued after your post... Thank you
Lwei66 Posted August 15, 2017 Report Posted August 15, 2017 Hi Kim B, I am new here too, my DS8 also had sudden onset of tics from a month ago. He had really bad multiple focal tics with head jerking, shoulder shrugging, arm jerking, lately some thigh jerking. At the worst period, his tics were non-stop. I hope your daughter has overcame the tics since then Thank you.
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