Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 , It doesn't sound like Sandifer's to me. I looked it up and it just didn't seem to fit. I think if it was reflux causing this she surely able to say so since it would have to be severe to cause that jerk. Excuse me if I'm off base since I researched this when I first read about her,so I don't remember everything! Did ' have a video EEG and did she twitch during the taping? Obviously something is going on,since she's having seizure like episode,according to the EEG,but it doesn't sound like a seizure disorder since you may have an option for med's.. She may also be thinking about medicine to help the twitching like Rispedal or something. Lindsey was treated for tics,otherwise I have said NO to all med's for her. All these are just thoughts. I would look at each of her meds and research the side effects. I no your burnt out right now though. I know all about that! I have researched Lindseys issues her whole life I think. ever since she was diagnosed as a floppy baby, then laughing/urinating which im sure is gelastic seizures.. (none for several years) sensory issues and global apraxia. I'm not convinced its RSS so I've made myself nuts over the years lol! You could get the EEG report before seeing the DR. Is the neuro in New york? My Lindsey's had a few abnormal EEG's but no seizures detected. Jennie mom to Lindsey- 9.7 In a message dated 1/22/2006 12:22:05 A.M. Eastern Standard Time, magicrss@... writes: I don't know how to write this, and I don't have any answers. Maybe someone out there is really good with google searches, because I am so overwhelmed it just makes me tired. says that she is still having the upper body " twitches. " The way she describes them they are almost like little " jerks " , which can cause her head to move as well. I haven't seen them occur in several weeks, but then again, I don't stare at her, and according to (and what I saw before), they are literally 1 second long. While in NY, we talked to the neurologist. She did NOT want to talk to us on the phone (drove us nuts, she kept saying things like parents mix up the information, they panic, etc) and my husband was trying to explain to her that by not saying anything we would panic more. She basically said that 's EEG was abnormal; that it did indicate some type of seizure-like activity, but that we really needed to come in to discuss this. She said she was not in any danger by waiting over the weekend. She seemed to downplay Sandifer's now. The GI that I talked to over the phone last week said that Sandifer's was more common in infants, and usually occurs at the time the child is eating (which is NOT what has happened with ). I know we need to read the EEG report, and meet with the neuro. also has the new GI workup on Monday. has been complaining of random headache-like pains off and on the last two months. At this point, Steve and I are leaning towards demanding an MRI, just to calm our own fears. The neuro was saying that the goal is to have comfortable, so we will discuss further testing, and whether or not we want to try medications. My poor daughter already takes 4 meds a day plus a shot. She flat our refuses to take Tylenol when she has a headache because she is so tired of taking meds. I am afraid that this will put her over the top. I know that it is doing that to us!!! She does NOT know of the abnormal EEG findings, and at this time, we are not telling her. Anyway, I would love to know if Sandifer's can cause an abnormal EEG reading. My husband is leaving for Malaysia on Tuesday for the week, my Tues/Thurs babysitter is sick and out for the week, and I am so depressed and tired. On a side note, we had to put my beloved 15-year-old dog Tucker to sleep last Wednesday morning. Then an hour later, get to the airport to go to NY for Dr. H. I am sure that part of my sadness is the delayed reaction of losing Tucker. Anyway. If anyone has experience with abnormal EEGs, Sandifer's, anything, let me know. You can write me privately or here. (, age 10) Yahoo! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Jen Thanks for the updates on , I have been wondering what was going on. Im glad the arimidex(?sp) is working, but sory to hear you are no nearer an answer with the twitching and headaches. I know that feeling of frustration when you dont have an answer. I wondered if these symptoms could be from scoliosis, if there is pressure in the wrong place, Im only saying this cause I vaguely remember that Lindsey had scoliosis. The only other thing I can think of is side effects from medications, can you ring the drug companies of the medications she is on and discuss it with the reps. Just my 2 cents worth and you have probably been looking into all this and alot more. wish I could help more. Jody(mum to Liam and Cameron) PS Sorry about your dog, Ill send him a rainbow!!! > > I don't know how to write this, and I don't have any answers. Maybe > someone out there is really good with google searches, because I am so > overwhelmed it just makes me tired. > > says that she is still having the upper body " twitches. " The > way she describes them they are almost like little " jerks " , which can > cause her head to move as well. I haven't seen them occur in several > weeks, but then again, I don't stare at her, and according to > (and what I saw before), they are literally 1 second long. > > While in NY, we talked to the neurologist. She did NOT want to talk to > us on the phone (drove us nuts, she kept saying things like parents > mix up the information, they panic, etc) and my husband was trying to > explain to her that by not saying anything we would panic more. > > She basically said that 's EEG was abnormal; that it did > indicate some type of seizure-like activity, but that we really needed > to come in to discuss this. She said she was not in any danger by > waiting over the weekend. > > She seemed to downplay Sandifer's now. The GI that I talked to over > the phone last week said that Sandifer's was more common in infants, > and usually occurs at the time the child is eating (which is NOT what > has happened with ). > > I know we need to read the EEG report, and meet with the neuro. > also has the new GI workup on Monday. > > has been complaining of random headache-like pains off and on > the last two months. At this point, Steve and I are leaning towards > demanding an MRI, just to calm our own fears. > > The neuro was saying that the goal is to have comfortable, so > we will discuss further testing, and whether or not we want to try > medications. My poor daughter already takes 4 meds a day plus a > shot. She flat our refuses to take Tylenol when she has a headache > because she is so tired of taking meds. I am afraid that this will > put her over the top. > > I know that it is doing that to us!!! She does NOT know of the > abnormal EEG findings, and at this time, we are not telling her. > > Anyway, I would love to know if Sandifer's can cause an abnormal EEG > reading. My husband is leaving for Malaysia on Tuesday for the week, > my Tues/Thurs babysitter is sick and out for the week, and I am so > depressed and tired. > > On a side note, we had to put my beloved 15-year-old dog Tucker to > sleep last Wednesday morning. Then an hour later, get to the airport > to go to NY for Dr. H. I am sure that part of my sadness is the > delayed reaction of losing Tucker. > > Anyway. If anyone has experience with abnormal EEGs, Sandifer's, > anything, let me know. You can write me privately or here. > > (, age 10) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 - I'm so sorry. This post sounds like you are going through a lot and I wish I could help you in some way. I'll e-mail you privately soon. - H > > I don't know how to write this, and I don't have any answers. Maybe > someone out there is really good with google searches, because I am so > overwhelmed it just makes me tired. > > says that she is still having the upper body " twitches. " The > way she describes them they are almost like little " jerks " , which can > cause her head to move as well. I haven't seen them occur in several > weeks, but then again, I don't stare at her, and according to > (and what I saw before), they are literally 1 second long. > > While in NY, we talked to the neurologist. She did NOT want to talk to > us on the phone (drove us nuts, she kept saying things like parents > mix up the information, they panic, etc) and my husband was trying to > explain to her that by not saying anything we would panic more. > > She basically said that 's EEG was abnormal; that it did > indicate some type of seizure-like activity, but that we really needed > to come in to discuss this. She said she was not in any danger by > waiting over the weekend. > > She seemed to downplay Sandifer's now. The GI that I talked to over > the phone last week said that Sandifer's was more common in infants, > and usually occurs at the time the child is eating (which is NOT what > has happened with ). > > I know we need to read the EEG report, and meet with the neuro. > also has the new GI workup on Monday. > > has been complaining of random headache-like pains off and on > the last two months. At this point, Steve and I are leaning towards > demanding an MRI, just to calm our own fears. > > The neuro was saying that the goal is to have comfortable, so > we will discuss further testing, and whether or not we want to try > medications. My poor daughter already takes 4 meds a day plus a > shot. She flat our refuses to take Tylenol when she has a headache > because she is so tired of taking meds. I am afraid that this will > put her over the top. > > I know that it is doing that to us!!! She does NOT know of the > abnormal EEG findings, and at this time, we are not telling her. > > Anyway, I would love to know if Sandifer's can cause an abnormal EEG > reading. My husband is leaving for Malaysia on Tuesday for the week, > my Tues/Thurs babysitter is sick and out for the week, and I am so > depressed and tired. > > On a side note, we had to put my beloved 15-year-old dog Tucker to > sleep last Wednesday morning. Then an hour later, get to the airport > to go to NY for Dr. H. I am sure that part of my sadness is the > delayed reaction of losing Tucker. > > Anyway. If anyone has experience with abnormal EEGs, Sandifer's, > anything, let me know. You can write me privately or here. > > (, age 10) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 jennifer, i have no answeres for you but i wanted to offer you a ((HUG)) for all you guys are going through!! jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2006 Report Share Posted January 24, 2006 jen i have to answers for you , but wanted to let you know i was thinking of you guys cara mom to jacob Brock wrote: I don't know how to write this, and I don't have any answers. Maybe someone out there is really good with google searches, because I am so overwhelmed it just makes me tired. says that she is still having the upper body " twitches. " The way she describes them they are almost like little " jerks " , which can cause her head to move as well. I haven't seen them occur in several weeks, but then again, I don't stare at her, and according to (and what I saw before), they are literally 1 second long. While in NY, we talked to the neurologist. She did NOT want to talk to us on the phone (drove us nuts, she kept saying things like parents mix up the information, they panic, etc) and my husband was trying to explain to her that by not saying anything we would panic more. She basically said that 's EEG was abnormal; that it did indicate some type of seizure-like activity, but that we really needed to come in to discuss this. She said she was not in any danger by waiting over the weekend. She seemed to downplay Sandifer's now. The GI that I talked to over the phone last week said that Sandifer's was more common in infants, and usually occurs at the time the child is eating (which is NOT what has happened with ). I know we need to read the EEG report, and meet with the neuro. also has the new GI workup on Monday. has been complaining of random headache-like pains off and on the last two months. At this point, Steve and I are leaning towards demanding an MRI, just to calm our own fears. The neuro was saying that the goal is to have comfortable, so we will discuss further testing, and whether or not we want to try medications. My poor daughter already takes 4 meds a day plus a shot. She flat our refuses to take Tylenol when she has a headache because she is so tired of taking meds. I am afraid that this will put her over the top. I know that it is doing that to us!!! She does NOT know of the abnormal EEG findings, and at this time, we are not telling her. Anyway, I would love to know if Sandifer's can cause an abnormal EEG reading. My husband is leaving for Malaysia on Tuesday for the week, my Tues/Thurs babysitter is sick and out for the week, and I am so depressed and tired. On a side note, we had to put my beloved 15-year-old dog Tucker to sleep last Wednesday morning. Then an hour later, get to the airport to go to NY for Dr. H. I am sure that part of my sadness is the delayed reaction of losing Tucker. Anyway. If anyone has experience with abnormal EEGs, Sandifer's, anything, let me know. You can write me privately or here. (, age 10) Quote Link to comment Share on other sites More sharing options...
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