Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , Although the EEG shows seizure like activities have they also ruled out tics? A few children who have CHARGE have Tics including Patty. This probably isn't the case but I'm just trying to throw more ideas out there. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , Although the EEG shows seizure like activities have they also ruled out tics? A few children who have CHARGE have Tics including Patty. This probably isn't the case but I'm just trying to throw more ideas out there. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , Although the EEG shows seizure like activities have they also ruled out tics? A few children who have CHARGE have Tics including Patty. This probably isn't the case but I'm just trying to throw more ideas out there. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 Bonnie, What causes tics--do you know? Is it neurological activity in the brain, similar to short seizures? I'll google this and see if I can find more info, but I thought you might know more too. I've seen you talk about Patty's tics and Tourette's on the list before. I watched a show on Tourette's in kids just a couple weeks ago, and although the kids were quite a bit older than , some of their tics reminded me a lot of things she does. Not only does she do the rapid blinking, but she'll also have spells where she has what I call a facial spasm. The left side of her face will contract up and down several times, or sometimes her mouth will twist from side to side. You can watch her and tell it's nothing she's doing controllably. I'll talk to our neurologist about this possibility next week and see what he thinks. Does Patty take meds for her tics? I know he'll ask me what meds people on the list use for this. and one other little girl here are his first CHARGE patients, so he considers you guys the " experts, " too! , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 Bonnie, What causes tics--do you know? Is it neurological activity in the brain, similar to short seizures? I'll google this and see if I can find more info, but I thought you might know more too. I've seen you talk about Patty's tics and Tourette's on the list before. I watched a show on Tourette's in kids just a couple weeks ago, and although the kids were quite a bit older than , some of their tics reminded me a lot of things she does. Not only does she do the rapid blinking, but she'll also have spells where she has what I call a facial spasm. The left side of her face will contract up and down several times, or sometimes her mouth will twist from side to side. You can watch her and tell it's nothing she's doing controllably. I'll talk to our neurologist about this possibility next week and see what he thinks. Does Patty take meds for her tics? I know he'll ask me what meds people on the list use for this. and one other little girl here are his first CHARGE patients, so he considers you guys the " experts, " too! , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 My daughter developed eye ticks in 8th grade. He eyes would roll back into the sockets and all you would see were the whites. We experimented with different drugs and finally clonazapam seemed to give the best control. The problem was that it also added to her fatigue. As time continued it seemed that she developed this rapid blinking. We had decided to look into botox for the tics and in the process a specialist told us he thought part of the problem was dry eyes. I questioned that thought, but bought the eye drops anyway to give them a try. The rapid blinking did diminish quite a bit. I think 2 things were going on the tics and the dry eyes. Recently we cut back the clonazapam to see what would happen. She must be " outgrowing " the tics because there wasn't much difference after she stopped the medication. When the tics were at their worst, she couldn't even read. She wants to get a driver's license, which I think since the tics and blinking are much better she should be able to do this summer. The eye drops we used were Tears Naturale II. Actually 2 different specialist recommended them. from IL (Karlee 18) Re: Rapid Blinking Bonnie, What causes tics--do you know? Is it neurological activity in the brain, similar to short seizures? I'll google this and see if I can find more info, but I thought you might know more too. I've seen you talk about Patty's tics and Tourette's on the list before. I watched a show on Tourette's in kids just a couple weeks ago, and although the kids were quite a bit older than , some of their tics reminded me a lot of things she does. Not only does she do the rapid blinking, but she'll also have spells where she has what I call a facial spasm. The left side of her face will contract up and down several times, or sometimes her mouth will twist from side to side. You can watch her and tell it's nothing she's doing controllably. I'll talk to our neurologist about this possibility next week and see what he thinks. Does Patty take meds for her tics? I know he'll ask me what meds people on the list use for this. and one other little girl here are his first CHARGE patients, so he considers you guys the " experts, " too! , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 My daughter developed eye ticks in 8th grade. He eyes would roll back into the sockets and all you would see were the whites. We experimented with different drugs and finally clonazapam seemed to give the best control. The problem was that it also added to her fatigue. As time continued it seemed that she developed this rapid blinking. We had decided to look into botox for the tics and in the process a specialist told us he thought part of the problem was dry eyes. I questioned that thought, but bought the eye drops anyway to give them a try. The rapid blinking did diminish quite a bit. I think 2 things were going on the tics and the dry eyes. Recently we cut back the clonazapam to see what would happen. She must be " outgrowing " the tics because there wasn't much difference after she stopped the medication. When the tics were at their worst, she couldn't even read. She wants to get a driver's license, which I think since the tics and blinking are much better she should be able to do this summer. The eye drops we used were Tears Naturale II. Actually 2 different specialist recommended them. from IL (Karlee 18) Re: Rapid Blinking Bonnie, What causes tics--do you know? Is it neurological activity in the brain, similar to short seizures? I'll google this and see if I can find more info, but I thought you might know more too. I've seen you talk about Patty's tics and Tourette's on the list before. I watched a show on Tourette's in kids just a couple weeks ago, and although the kids were quite a bit older than , some of their tics reminded me a lot of things she does. Not only does she do the rapid blinking, but she'll also have spells where she has what I call a facial spasm. The left side of her face will contract up and down several times, or sometimes her mouth will twist from side to side. You can watch her and tell it's nothing she's doing controllably. I'll talk to our neurologist about this possibility next week and see what he thinks. Does Patty take meds for her tics? I know he'll ask me what meds people on the list use for this. and one other little girl here are his first CHARGE patients, so he considers you guys the " experts, " too! , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 My daughter developed eye ticks in 8th grade. He eyes would roll back into the sockets and all you would see were the whites. We experimented with different drugs and finally clonazapam seemed to give the best control. The problem was that it also added to her fatigue. As time continued it seemed that she developed this rapid blinking. We had decided to look into botox for the tics and in the process a specialist told us he thought part of the problem was dry eyes. I questioned that thought, but bought the eye drops anyway to give them a try. The rapid blinking did diminish quite a bit. I think 2 things were going on the tics and the dry eyes. Recently we cut back the clonazapam to see what would happen. She must be " outgrowing " the tics because there wasn't much difference after she stopped the medication. When the tics were at their worst, she couldn't even read. She wants to get a driver's license, which I think since the tics and blinking are much better she should be able to do this summer. The eye drops we used were Tears Naturale II. Actually 2 different specialist recommended them. from IL (Karlee 18) Re: Rapid Blinking Bonnie, What causes tics--do you know? Is it neurological activity in the brain, similar to short seizures? I'll google this and see if I can find more info, but I thought you might know more too. I've seen you talk about Patty's tics and Tourette's on the list before. I watched a show on Tourette's in kids just a couple weeks ago, and although the kids were quite a bit older than , some of their tics reminded me a lot of things she does. Not only does she do the rapid blinking, but she'll also have spells where she has what I call a facial spasm. The left side of her face will contract up and down several times, or sometimes her mouth will twist from side to side. You can watch her and tell it's nothing she's doing controllably. I'll talk to our neurologist about this possibility next week and see what he thinks. Does Patty take meds for her tics? I know he'll ask me what meds people on the list use for this. and one other little girl here are his first CHARGE patients, so he considers you guys the " experts, " too! , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 , Patty was diagnosed with Tourettes when she was around age of 10. Hers were a facial grimace, hand flailing, knee jerking and a unique nasal sound. It's hard to explain. Yes, it is neurological. It's kind of an interference in the wiring. She can hold them in but when that happens when it comes it's even worse. They came on suddenly and we thought for sure that she was having seizures. We were wrong. The big thing is that they stopped as soon as she fell asleep. It is one of the most socially isolating things she has. Luckily hers are now almost non existent. But they do come back. Stress is one of the biggest triggers. When we went to our first conference back when Patty was 14 I can remember crying on the plane home because I had no answers and she was the only one with CHARGE who had tics. Low a behold there are now a few children who have them. It all makes sense Patty's on Risperdal. It took about three weeks to have any impact at all. She also was on Quanfacine for a while. As she grew and her body changed so did her med levels. We had to continually play around with the meds and their dosages. She used to be on a larger amount of Risperdal. Now that she's an adult things are stable. Plus she takes celexa for anxiety. Reduce the stress and anxiety and the tics are reduced. The same thing goes for seizures by the way. She now is on a small amount of Risperdal. It is obvious her tics will always be there and she couldn't live without the meds. I don't think they'll ever go away completely. Patty also has sought counseling from someone skilled in children with special needs. Along with that she has learned relaxation techniques. That is a huge benefit too. Patty has great coping strategies. Having so young I wouldn't jump to any conclusion. I know it's hard. Just take what you know, write it all down and then go with what you can. I wish you all the best. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 , Patty was diagnosed with Tourettes when she was around age of 10. Hers were a facial grimace, hand flailing, knee jerking and a unique nasal sound. It's hard to explain. Yes, it is neurological. It's kind of an interference in the wiring. She can hold them in but when that happens when it comes it's even worse. They came on suddenly and we thought for sure that she was having seizures. We were wrong. The big thing is that they stopped as soon as she fell asleep. It is one of the most socially isolating things she has. Luckily hers are now almost non existent. But they do come back. Stress is one of the biggest triggers. When we went to our first conference back when Patty was 14 I can remember crying on the plane home because I had no answers and she was the only one with CHARGE who had tics. Low a behold there are now a few children who have them. It all makes sense Patty's on Risperdal. It took about three weeks to have any impact at all. She also was on Quanfacine for a while. As she grew and her body changed so did her med levels. We had to continually play around with the meds and their dosages. She used to be on a larger amount of Risperdal. Now that she's an adult things are stable. Plus she takes celexa for anxiety. Reduce the stress and anxiety and the tics are reduced. The same thing goes for seizures by the way. She now is on a small amount of Risperdal. It is obvious her tics will always be there and she couldn't live without the meds. I don't think they'll ever go away completely. Patty also has sought counseling from someone skilled in children with special needs. Along with that she has learned relaxation techniques. That is a huge benefit too. Patty has great coping strategies. Having so young I wouldn't jump to any conclusion. I know it's hard. Just take what you know, write it all down and then go with what you can. I wish you all the best. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 , Patty was diagnosed with Tourettes when she was around age of 10. Hers were a facial grimace, hand flailing, knee jerking and a unique nasal sound. It's hard to explain. Yes, it is neurological. It's kind of an interference in the wiring. She can hold them in but when that happens when it comes it's even worse. They came on suddenly and we thought for sure that she was having seizures. We were wrong. The big thing is that they stopped as soon as she fell asleep. It is one of the most socially isolating things she has. Luckily hers are now almost non existent. But they do come back. Stress is one of the biggest triggers. When we went to our first conference back when Patty was 14 I can remember crying on the plane home because I had no answers and she was the only one with CHARGE who had tics. Low a behold there are now a few children who have them. It all makes sense Patty's on Risperdal. It took about three weeks to have any impact at all. She also was on Quanfacine for a while. As she grew and her body changed so did her med levels. We had to continually play around with the meds and their dosages. She used to be on a larger amount of Risperdal. Now that she's an adult things are stable. Plus she takes celexa for anxiety. Reduce the stress and anxiety and the tics are reduced. The same thing goes for seizures by the way. She now is on a small amount of Risperdal. It is obvious her tics will always be there and she couldn't live without the meds. I don't think they'll ever go away completely. Patty also has sought counseling from someone skilled in children with special needs. Along with that she has learned relaxation techniques. That is a huge benefit too. Patty has great coping strategies. Having so young I wouldn't jump to any conclusion. I know it's hard. Just take what you know, write it all down and then go with what you can. I wish you all the best. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Thanks for the tip on the dry eyes and artificial tears, . I hadn't thought of that being a possible cause, too. And Bonnie, thanks for the info on tics. It's so hard to say what's going on with right now as she's so young and doesn't really have a level of communication at this point to explain what might be happening to her. She does a lot of the hand flapping, too--and sometimes her eyes will roll back in her head when she does that. I never know if these things are seizures, or tics, or just plain self-stim behaviors. My guess is, a little of all three. We took videos of her at various times and showed them to her neurologist and developmental ped. At first, when they started watching her, she was doing a lot of the hand flapping and shaking her head back and forth real fast. They said, oh I think that's just self-stim behavior. But then it quickly went into one of her rapid blinking, rolling back her eyes, and then long staring spells, and they both looked at each other and said, oh that definitely looked seizure-related! And like I said, her EEG did show signs of seizure activity. But there could be tics in there too--it's all so confusing and interrelated and hard to pinpoint! It's probably our biggest area of worry about her right now, because I honestly think it affects her attention and learning abilities, and I don't feel like we (us or her doctors) are figuring out how to help her control it. We're going to try cranial sacral therapy this summer and see if that might help some in addition to the meds. did CST a couple of years ago for a few months, but she wasn't having the level of these " episodes " at that point, so maybe that will help some too. I do agree with you that anxiety triggers the episodes even more--we can see that with all the time. I appreciate all the info! , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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