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myrose

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Everything posted by myrose

  1. Hello everyone, I am still in New York and do not have a lot of time (I am exhausted) anyhow my daughter started to rub her eyes constantly. So bad that they looked as though they were starting to get black and blue! It was awful and I finally asked her why she felt the need to constantly do this. I was wondering if this was a new tic I have not seen before. She repsonded with I have to because if I don't my eyes will not stop blinking. So apparently she replaced the eye blinking with the rubbing. She said she did not want to blink anymore. I tried another allergy med out of desparation but
  2. Its quiet here now.....she is finally asleep. What an ordeal today was. To answer some of your questions...she was back up to 25mg from 15mg a fews days before the visit to the clinic the first time....so around the 15th she started at 25mg again. (She was on the 15mg before that) It pretty much worked instanatly before when we first started it....the jerks and things were gone in a matter of days. In regards to the Zith...the last round was 3 pills (1x a day 250mg) they were big and white and did not mention generic on them. Now tonight I picked up another 3 day supply (1x day 250m
  3. Thank You Cheri, tomorrow morning will bring an answer to me that I have been waiting for. I'll just have to wait and see..... If the Zith does something miraculous again then at least I will have a starting point and understand this a bit more. My daughter did also come down with a stuffy nose and stated that she felt like she was getting a cold.....interesting. Also being that the kind lady called in the script without seeing us I didn't do the rapid strep test. I figured with the Zith she was covered if she did have strep. Are you saying that if she did not have strep but another
  4. Yes I did order and finally receive it. I tried it once with my daughter (supposed to have done it 3 times a day) but didn't want to do it again until I checked to see if it would interact with her topamax. I then tried it again just one time and again 0 results and being that I used it Sunday night to help her I am now wondering if it was one of the ingredients in it that started this new and strange vocal. Wish I could say for sure but I am thinking you are aware of the whole puzzle to this thing. I will say that I always try everything before giving to my daughter so of course I tried
  5. So we have been back on Topamax full strength since after the Zith stopped and things started again. We are heading to New York in the morning and after everything being calm and okay with no tics.....Sunday came and I can now absouletely confirm that we do have vocal tics. This got worse yesterday and was even really bad today. My daughter is not handling things well at all and well I myself seem to be OUT OF MY MIND with anxiety and heart palpatations are back (luckily they are mild) We have never really experienced this nor could we confirm for sure she ever had a vocal. Its not a wonder
  6. FINALLY someone who has heard of UTICA! YAH! LOL I have never been down your way. Its such a change now living in the FAST PACE of Orlando. I really have not adjusted and do not think I ever will. I am so sorry things are not going well right now. And I sure do hope things turn around quickly so you can relax and enjoy the rest of the summer. I know you are not one for meds and of course this is more of an alternative place but I was just thinking and wondering if you ever considered anything like topamax. Not long term but just temporary. Just to have or should I say "buy" some time t
  7. Hello Faith...Upstate New York. About an hour out of Syracuse NY. Where are you. The little place I am from is called Utica but everytime I mention it everyone says "WHERE"!??? The dissapearance of tics our last visit was leading me to believe it was allergy induced tics here at home or possibly something in our home here. We had it built and its just 4 years old but I guess you never know. Especially with all that dry wall from China UGH! I had that checked out too! Thanks for your report on the Dr. Sims trip. You were going to be my deciding point.....so I am not going for now anyhow.
  8. No one has been to Crispers??????Cheri???
  9. Hello all, to answers ome questions.....When we first tried the topamax it worked immediately at the 15mg for the severe head bob and body jerk. That is why I questioned it when we started it back up because it didn't touch her. We are now I think on day 3 or 4 of the 25mg and she has stopped everything again. The only thing that remains is the "I feel like I have to go to the bathroom) This will be fun on the plane Wednesday. With the way my luck has been going we will hit a pocket of air while in that little tin can. Because of course she will not go in by herself. We will both fall to th
  10. Just curious for those of you that have a Crispers around you.....I love this place and my daughter loves the all natural ice-cream as well. Can anyone inform me of how to find out if they use perservatives, dyes, MSG and other yucky stuff? I am not concerned about the fat content or calories of the food...just the bad stuff. Its becoming our favorite place to eat and I would dread it if I found out something I really do not want to. Thanks
  11. I was really hoping and praying that there would be better results for all of you. I am so sorry but at the same time thankful to be a part of this board and for all of you to share. I was surely throwing this whole thing around in my mind and trying to decide what to do. All of you sharing has helped me decide that maybe this is not for us. Well...at least right now. So Thank You so much to all of you who have been sharing. I pray everyday that soon something will be discovered and help everyone. Goodluck to those of you that may still be waiting on an appointment. If it worked for just o
  12. The only reason I thought it was the zith and not the topamax was because we were on the 15mg since the clench had started. It was almost two weeks and it did nothing. Our original dosing was 25mg and that is where we had such great results. I started the 25mg but stopped after two days because I wanted to incorporate the tic tamer and really did not want to wean off the topamax again after we cleaned the diet. Anyhow she was progressing the whole time on the 15mg and the 25mg wasn't given long enough to make a difference. So right after the Zith was started BAM she calmed and even the bat
  13. Not even the second or third neuro will agree to do just a trial. Because of the aso titers not being elevated. I seem to be at a dead end with doctors. I even brought in and sent via email a bunch of research about the titers and baselines from Buster. He was correct it saying I would get to a dead end because I did. One of them never even got back to me and just wanted to up her dose of topamax and then add clonidine! I think I have to travel out of state to get help. Its not easy because our insurance dropped her because of all this and everything we do is basically out of pocket. She was
  14. Hello.....I am not sure what it was! This is so frustrating UGH! She completely calmed the first day while taking the Zith. This to me left me with no conclusion but to say that the foods she got into did not cause the onset of her bad tics. I only say this because I feel when they have had an offending food that it must take time to get out of the body (correct?) So one day off from junk food should have not calmed her to the point she was at. She was fine and no blinking or clenching the whole three days on the Zith. (She was also still taking 15mg of topamax) which didn't seem to help
  15. Just thinking that those who are helped by this may have some form of TMJ??? Maybe not.....just thinking aloud and wondering why it helps some and not others?? Another mystery as always! Is anything truly clear cut and dry with this thing!
  16. Will a place like vitamin world carry this? If so do you do 1/2 the adult dose for children? How much vitamin C? Do you have to take into account their intake of daily foods and drinks with Vitamin C? Like orange juice and things?? Just curious. My daughter appears to have really bad allergies. She even has those dark bags under her eyes which was a dead give away for the nurse we saw. I was using claritin tabs for a short time but stopped and now I see the darkness under her eyes coming back. I keep looking for natural allergy relief but so far nothing works.
  17. I know this is a funny question but I keep seeing the IMHO....what does this stand for. I have not quite got them all down yet. I just learned that DD is dear daughter??? I need to catch up with the world!
  18. mommyof2.... I wish too I could figure out why in the world it apparently hit my daughter and no other kids at all in the whole family. This is what puzzles me the most. I keep thinking it was something I did!!!!! The only thing that was different out of all the kids was the number of vaccinations they all received (including my brother and I) And of course NO ONE got the 9 vaccinations she did at one time. My conclusion is that she may have had the gene as we all do and instead of remaining in sleep mode....the vaccinations that day woke them all up. If only I could go back to that d
  19. The video that Char posted. Go to youtube...com and then type in Dr. Stacks. Then hit the first video, its labeled DDowney6. It shows Dr. Stacks testing with the sticks. I am going to try this at home. His video seems more professional than the Dr. Sims and I can understand and see the whole process better. No dis-respect about the Sims video....I just like this one better and it helped me understand better as well. The patient also had vocals. You can also do the test at home and make your own temp appliance by placing rubberbands around the sticks. It shows you everything, even th
  20. powerofprayer....yes I was told that and also read that many times during my nightly reading. My Father may have had a tourettes syndrome so that would explain my ocd. It got alot better as I got older though. Now as an adult I am just really organized...more so than others and my house well.....you could eat off the floors! LOL I can not stand to have something out of place or to have something that does not have a place. Still strange though how my brother (being that TS is more common in boys) never displayed anything nor does he now as an adult. My Father also had two daughters be
  21. Faith...I am hoping "NO NEWS" is GOOD NEWS! I have been praying for you guys all day! I think if you have some success and I end up going, I will go to Dr. Stacks. Did you see the video that was just posted (on youtube)
  22. I am praying for you Faith!!!!! Goodluck!
  23. Faith... If you do not mind me asking, what are the kinds of tics your son is displaying at this time? I am waiting for your reply after you appointment. This will help me determine if I should make an appointment for my daughter. I had my daughter bite down on her floss stick the other night (holding it sideways) I had no idea what I was doing but interesting enough her left eye movement stopped and she wasn't trying to clench down on that side as well. Who knows what that means.... I am too torn to make heads or tails of this thing just yet. So I will wait your reply and decide from the
  24. Thanks for that ton of info Linda. We are still good today. She has one more day on the Zith. If after that things suddenely come back I will call the creations place. I was informed of that place a bit ago and was about to call but it was then her neuro said "NO" to Pandas because her aso titers were not elevated when tested. Topamax helped after that when it got bad so we just stayed on it to get some relief while we tried to pick and figure this whole thing out. Thanks again for all the info. Hopefully maybe I can get to the bottom of things this time or at least come close. Also sh
  25. Can you inheret OCD? Seems from what I have read, some say no, some say yes. Any thoughts?
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