cobbiemommy Posted September 24, 2013 Report Share Posted September 24, 2013 (edited) DS, 14, has to be talking to himself all of the time-echolalia. Usually it is in a half whisper, but sometimes sounds very sinister. He will repeat lines from movies, television shows, songs from his ipod or even lines from books he has read. I am telling you that this is driving me bananas. The only time he doesn't do it is when he is having an actual conversation or is very focused on doing something. He takes an ADHD medication called Metadate so that he can function for school. He is getting all A's again, so I believe the medication is effective in that way. He also takes Prozac for mood issues. These were both prescribed while he was taking IV abx because his mood and attention were so crappy. We are waiting to have a tonsillectomy performed until after the evaluation of his gallbladder. Immunologist feels it could be two issues, not just one. He is heterozygous for A1298C mutation. He has been treated in the past for Lyme/Bartonella. He did three months of IV meds and just finished two years of other abx. He is currently taking Augmentin to cover for strep. I still do not feel that he is nearly as good as he was while taking steroids/IVIg for infectious encephalopathy. I feel bad because I am always asking him to be quiet, but this talking to himself is literally driving me up the wall. I don't feel like this is a conscious pattern, but he can control it for a little while. How have others handled this situation? Edited September 25, 2013 by cobbiemommy Link to comment Share on other sites More sharing options...
911RN Posted September 25, 2013 Report Share Posted September 25, 2013 DS, 14, has to be talking to himself all of the time-echolalia. Usually it is in a half whisper, but sometimes sounds very sinister. He will repeat lines from movies, television shows, songs from his ipod or even lines from books he has read. I am telling you that this is driving me bananas. The only time he doesn't do it is when he is having an actual conversation or is very focused on doing something. He takes an ADHD medication called Metadate so that he can function for school. He is getting all A's again, so I believe the medication is effective in that way. He also takes Prozac for mood issues. These were both prescribed while he was taking IV abx because his mood and attention were so crappy. We are waiting to have a tonsillectomy performed until after the evaluation of his gallbladder. Immunologist feels it could be two issues, not just one. He is heterozygous for A1298C mutation. He has been treated in the past for Lyme/Bartonella. He did three months of IV meds and just finished two years of other abx. He is currently taking Augmentin to cover for strep. I still do not feel that he is nearly as good as he was while taking steroids/IVIg for infectious encephalopathy. I feel bad because I am always asking him to be quiet, but this talking to himself is literally driving me up the wall. I don't feel like this is a conscious pattern, but he can control it for a little while. How have others handled this situation? My son does the same thing...has since about age 4 and he is 13. Same exact content as your son--eerie deja' vu when I read your post because I could have written the same beginning paragraph. If Metadate is Ritalin based--I can only say it will make this behavior worse. Wish I had some answers but just wanted to know I feel your pain. Our neurologist believes self talk is more of a compulsive tic than echolalia or palalia. My son, too, is able to "suppress" it for awhile and be quiet when asked but then like any tic--comes back. Can drive me crazy in some days--especially in public and it can have some impact in the classroom also. can be distracting to other students. Link to comment Share on other sites More sharing options...
Mayzoo Posted September 25, 2013 Report Share Posted September 25, 2013 (edited) For me, accepting that my kiddo has very little control over her vocal tic has helped me accept it better. Trying to get her to stop it is like asking her to change the color of her eyes, and only increases her stress load for any short period that she may manage to suppress it. My kiddo hates her vocal tic with passion. She begs me to make it stop. I feel I was only adding to her burden when I did not accept her tic as simply a part of our life right now. My job is to lessen the trauma this condition is causing her and teach her to accept that which she herself cannot change. Kiddo currently has echolalia, and speaks only in a whisper. In the past she has had a barking tic and a "hollering" tic. Neither the barking or hollering went over well in the public, but I had to learn to stop caring what others thought. We do home school, so that removes one obstacle of dealing with tics anyway. Before I truly accepted that kiddos tic was beyond her control, it drove me bonkers. I would get upset, stressed, headaches, tense and cranky a lot. Now, things are much better around here, and two of the tics have disappeared with a change in her abxs for now anyway. Edited September 25, 2013 by Mayzoo Link to comment Share on other sites More sharing options...
rowingmom Posted September 25, 2013 Report Share Posted September 25, 2013 Have you been using anti-inflammatories? If steroids worked initially inflammation is probably involved, We use curcumin and japanese knotweed. These helped DD when her tics flared horribly after using grapefruitseed extract. Her teacher actually called me saying the difference in her ticcing was night and day - what had I done? Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted September 25, 2013 Report Share Posted September 25, 2013 I don't have a suggestion, but my son, diagnosed with PANDAS and possible lymes, does the whispering a lot. A neurologist told us recently that speech and language is a neurological function, and inflammation can impact the whispering.I do know that a doctor prescribed adhd meds at one point to address the whispering (?), and it led him to talk manically Link to comment Share on other sites More sharing options...
cobygurl Posted September 26, 2013 Report Share Posted September 26, 2013 Sorry to hijack the post but a was wanting to know Rowingmom, how much curcumin does your daughter take? Over here, we haven't had constant talking but we did have CONSTANT singing and LOUD talking, that went away once he started taking an anti-viral. We still do have stuttering...we are wondering whether that's developmental (he is 5) or is a tic. I've heard it can be tic related. Link to comment Share on other sites More sharing options...
rowingmom Posted September 26, 2013 Report Share Posted September 26, 2013 While we were trying to resolve the flare caused by grapefruitseed extract we used 500mg BID (SourceNaturals Turmeric with Meriva). DD was 72 lbs at the time. She was also taking 1/4 tsp japanese knotweed tincture TID. Link to comment Share on other sites More sharing options...
cobbiemommy Posted September 26, 2013 Author Report Share Posted September 26, 2013 I will check into the turmeric. I wonder what the dose would be for a 200 lb. individual. Link to comment Share on other sites More sharing options...
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