myrose Posted June 27, 2009 Report Share Posted June 27, 2009 Okay vocal showed up after head injury and ingestion of a small amount of MSG. Got into things like dyes and artificial snacks at camp. Vocal went away the day after it appeared but came back yesterday and we have progressed on to every tic she ever had except for thr intense body jerks. Vocal is going, eye blinking is off the wall and shoulders are along for the ride as well. About 14 days off from Topamax now.....not sure if it finally got out of her system or if its the junk she ate or the head injury!!!!!! All I know is that things were so bad today that my heart started palpatations again when she started to again complain and of course CRY about how she cannot stop it. I was hoping to move slowly and take everything one thing and one day at a time but I have obviously lost that sense and thought now. Not sure what tomorrow will bring, worst part is that I dropped my whole bottle of tic tamer on the floor before I even gave it to her! I ordered it again last night and will start that when it arrives....if we make it unitl then anyhow. I am so down and out from this MONSTER!!!!!!!!!!!!!!! We were doing so well. She looks and acts like an emotional little mess.....its so sad to see this little 6 year old be over powered with these things again. Maybe tomorrow will be better...please pray for us. I will try the tic tamer the second it arrives.....its supposed to be fast acting. Link to comment Share on other sites More sharing options...
CSP Posted June 27, 2009 Report Share Posted June 27, 2009 Myrose, Sorry if you already told us this, but what did the Dr. say about when or if you saw her returning back to her pre-topimax state? CP Link to comment Share on other sites More sharing options...
mommyof2 Posted June 27, 2009 Report Share Posted June 27, 2009 MyRose I am so sorry to hear what youa re going through. This is such a MONSTER as you had said. I am anxiously awaiting my son to come home from a trip to the mountains with his father to see how he is doing. He had started up a bit last week--he too took a good hit to the head the week before at bb practice, lost two molars within a week, Grandparents sent them a bag of gummies---when I complained they said it will not hurt him--it's not chocolate!!!!! I gave in, and here we are... Also had him on the generic topamax for about 2 weeks when I found the vocals coming back... I had to wait utnil I could reorder and got him the topaxmax brand name..Friday would have been a week on that but I have not communications with them in the mountains so not sure how he is doing..........praying better!!!! Again Wendy I really hope today is better!!!!!!!!!!!!!!!!!!! My prayers go out to you and your sweet little girl...it is so hard to watch and so hard to know what they are going through!!! Mary Link to comment Share on other sites More sharing options...
faith Posted June 27, 2009 Report Share Posted June 27, 2009 myrose, I'm so sorry things have broke down. I have to say it feels plain to me that this most likely because of being off the topomax. I think its obvious it was helping absolutely all this time and you did say that she was not adhering to a strict diet at that time, at least in the beginning. I would say her system is depleted of the topomax and things are going back to the way they were. just my opinion. I don't know what things you are emplying right now, but whatever you do will take some time to set in. I do think you can bring down the level of tics in some way if you do not want to put her back on the med. Have you been using any supplements prior to this? If you think the med helps her absolutely, would you consider going back? praying for you, Faith Link to comment Share on other sites More sharing options...
Chemar Posted June 27, 2009 Report Share Posted June 27, 2009 ((((((myrose)))))) I hope and pray it gets better honestly I dont think it is clearcut that being off the topamax is why the tics have come back there have been major triggers in the form of the head injury, teething, MSG and other chemical intake in the snacks she got. she is stressed, you are stressed and we all know that stress is numero uno tic trigger too because of all those variables there just really is no baseline to be drawn as far as individual triggers go IMO if you were to restart the topamax again, and if the tics immediately wane, then I think that would give indication of its importance (or not) to her I hope the tic tamer arrives quickly and will help praying for you and her Link to comment Share on other sites More sharing options...
dee45 Posted June 27, 2009 Report Share Posted June 27, 2009 Hello everyone, Just was wondering what tic tamer is?? Hope things are better Wendy with your daughter. Deanna Link to comment Share on other sites More sharing options...
faith Posted June 27, 2009 Report Share Posted June 27, 2009 well yes, I'm sure some of those things are contributing, but what I'm saying is that I don't know what was employed in lieu of the topomax. myrose, what other treatments were you using to manage the tics? because I was under the impression that she had gone off dietary and supplements when she started the topomax. I'm just feeling that the topomax seemed to keep the tics at bay. so going off may require a new game plan. and the triggers and contributors will have to be figured in and managed. I could be wrong, of course, but if that med was working well, I wouldn't expect it to be the same when off of it, I would think some tics may creep back in. and again, you will have to deal with it in another way. it may take a little time. Faith Link to comment Share on other sites More sharing options...
mommyof2 Posted June 27, 2009 Report Share Posted June 27, 2009 Deanna here is the site with tic tamer http://www.nativeremedies.com/products/tic...&ysmtac=PPC Mary Hello everyone,Just was wondering what tic tamer is?? Hope things are better Wendy with your daughter. Deanna Link to comment Share on other sites More sharing options...
myrose Posted June 27, 2009 Author Report Share Posted June 27, 2009 Well she is still going strong today. The mouth (inside) biting has started as well. She begged for a piece of gum so she could stop. I am trying to hold off on anything until the tic tamer arrives. Faith....I wish I could be certain it was the topamax. The foods/snacks she has got into over the past few weeks at camp are things we just do not eat and things she has never really got into. We were on a clean diet with an occasional slip up here and there but for the most part it was free of anything artificial, dyes, preservatives and mostly all organic. I do not want to start the topamax again. I really want to get her system cleared out first just to see if all this settles down. If after that and after starting the tic tamer and nothing helps.....well then I may have to consider the topamax again. I am sick to my stomach over this whole thing again. I wish if she had to tic it would just be mild and not bother her. If the body jerks come back as they were before I am not sure if she can handle it. I will keep you all posted and am waiting for that mailman like you would not believe!!!!!! I have heard excellent results in regards to the tic tamer......I am praying that if anything it takes the edge off for her. We have about 10 family members scheduled to arrive in almost a week and so this is just not a good timing thing for us. It will add exciement, stress and all the other emotions that are known to be triggers. I thought I was stronger to travel this road the 2nd time around but I am just not so sure anymore. Thanks everyone for all your thoughts and prayers..... I will keep you posted. Link to comment Share on other sites More sharing options...
myrose Posted June 27, 2009 Author Report Share Posted June 27, 2009 If things could get ANY WORSE!!!!! I just went to check the staus of my order for the tic tamer........it stated that "due to high demand" the product is on back order and should ship within 1-4 weeks I just cannot win here and really can not believe this. She is crying at this time as well. I may start the topamax at a low 15mg until the tic tamer arrives. I will see how the day plays out before I resort to this but its not looking good at this point. I am going to see if I can get through to her neuro and get the okay if I feel we need to start the topamax to get us by for now. Link to comment Share on other sites More sharing options...
mara Posted June 27, 2009 Report Share Posted June 27, 2009 hi. has anyone found that tic tamer works?? julie Deanna here is the site with tic tamer http://www.nativeremedies.com/products/tic...&ysmtac=PPC Mary Hello everyone,Just was wondering what tic tamer is?? Hope things are better Wendy with your daughter. Deanna Link to comment Share on other sites More sharing options...
CSP Posted June 27, 2009 Report Share Posted June 27, 2009 myrose, I'm really sorry this is causing you so much worry. I'm not sure if I fully understand what is your daughters dx? I thought she had some questionable brain activity in a test the neuro did last year, and she was not a ts child? If you could clear this up for me so I understand I would be happy to ask what Dr. Sims thinks about your case if she is not a clear ts child. CP Link to comment Share on other sites More sharing options...
dee45 Posted June 27, 2009 Report Share Posted June 27, 2009 Hey Wendy, sorry to hear you are having some a rough time--are you still using the Claritin? could it be allergies again I know you mentioned that in previuos posts. I am praying that things settle down for you--I know you do not want to resort to meds but if the Topamax works then why not start it again--just a thought. Deanna Link to comment Share on other sites More sharing options...
myrose Posted June 28, 2009 Author Report Share Posted June 28, 2009 CSP....she had a mildly abnormal EEG but got a clear one just recently. It never had anything to do with her tics. It could of been a sign of seizures to come in the future but it wasn't seizure activity either. Anyhow the neuro said a tic-disorder and always left it with the "lets see what happens approach" and then of course the meds and wanting to increase everytime we saw him. Same ole story with the others..... The day did not get any worse but unfortunately it did not get any better either. We have also started to progress tonight to her confessing and reporting to me meaningless things. This one is hard to explain and with my mind in a whirlwind right now...I better save it for a later time. She has a new one as well that I have never seen and its almost like grinding her teeth but doing it while awake. Another one hard to explain but her whole jaw is in action with this one. PLEASE keep me posted on Dr. Simms. If he helps even ONE child on this board.....I am on the next plane. I really don't care the cost at this point. We have spent so much already that we completely went through our savings. I will find that frozen credit card in my freezer if I have to....no doubt about it. Deanna- I did get a call back from the neuro and explained our situation. He said I could give her the 15mg of topamax if I wanted to. She was on 25mg and I am sure you remember we weaned down to 15mg from that before we stopped. If things do not get better by Monday I will give her the 15mg until I get the tic tamer. Hopefully the 15mg will take the edge off and then we will not have to wean down before stopping it again. I am really not wanting to do this just yet so I will pray. I have been making her drink lots of purified water today and gave some mag and B-complex. I also had her best friend come over and play and she will also spend the night with us tonight. This idea was to just keep her busy and her mind off from things to buy some time and to keep her from dwelling on what is happening. She stopped complaining and crying after her friend arrived and they are coloring right now and getting ready to play a game. So at least this helped and I finally got something right!!!!!!!!!!!!! I hate this, I really do. Good luck to all of you going to Dr.Sims......I may be right behind you. Link to comment Share on other sites More sharing options...
Chemar Posted June 28, 2009 Report Share Posted June 28, 2009 myrose have you done a strep culture at all since this started again a flag just went up when you said she started the confessing/reporting thing Link to comment Share on other sites More sharing options...
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