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myrose

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  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 it did nothing. She is also still on the 25mg topamax. So when I was at the store here in NY I was looking for a cream to place under her eyes and noticed allery eye drops by claritin. They are for 3 years old and up. You only need 1 drop in each eye every 12 hours. So I tried it and it worked! The rubbing and blinking has stopped completely and the vocal is gone as well. I notice when it hits the 12 hour mark she will start to wipe the eyes again. This stuff is a godsend for us right now! I wish I knew they exsisted before and that the rubbing and blinking could simply be stopped with a few eye drops. Have to run.....things are going great and we are having a wonderful time! If anyone triee the claritin eye drops please let me know if the blinking stops. I think our next step is to look into allergies....this is a wonderful clue for me! Lastly....I forgot, we did start that antibiotic (the generic one) and it made no change in her the 2nd time we did it. So the first time was a fluke or it was the generic?? Who knows but when we arrived here things were really bad and getting worse! Things have calmed now after the drops and so hopefully they will stay like this until we return home. I hope everyone is well and doing good......ITS COOOOOLD HERE!!!!!!!!!!!!!!!!!!!!!!!!!!
  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 250mg) but the pills were smaller and a color red to them. This is the one that reads the generic underneath the label. The vocal tic is a loud and constant HUH or HMMM (hard to explain it) The weird movement when she woke up today was a very slow shoulder movement and then something slowly with her hand. I remember this exactly back when her teacher called me to school (it was when it all started) very slow movements and nothing like her normal tics which are much quicker. Its hard for me to explain it so I apologize...the movements I saw back then and today were just very slow ones and not something she does all the time. I only saw it this morning and as I stated back when it all started. It scares me when I see it and I do not like it at all. I think thats all the questions.... I will try and update when we get to New York tomorrow. She is quietly sleeping now...she slept all day which is also very weird. I did not think she was going to be able to fall alseep tonight because of all the napping throughtout the day today. Funny thing is that she NEVER NAPS or sleeps during the daytime. Not since she was 3. Thank You to ALL OF YOU. Thanks SO MUCH for all your prayers, help, thoughts and suggestions. I am taking a deep breath and just giving this to GOD. I hope all is well with everyone.
  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 infection (bacterial or virus) that it could trigger tics? If this is what you are saying then I am agreeing. Looking back at my notes she was always at her worst when her nose was stuffed. Thanks again for your thoughts and prayers Cheri
  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 it. I have been planning a trip since last week and the plane leaves tomorrow. I do not do well as far as planes and the thought of the whole thing has had me paniced and full of anxiety over the past few days and especially so today. So I will say that its helped me in calming my system down and actually being able to swallow food. I am too scared to give it to my daughter again so I too am waiting reports from other Moms in regards to their reuslts of this. Sorry I did not have more or better news to share..... Please also let me know if you try and your results as well. For now I am just going to use it until after I get back safely. Wish it were stronger in my case!
  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 any longer and this whole thing is making me sick to my stomach! The topamax seemed to be working again and things were back to normal (since before going off from it) and then BAM! Sunday rolled around. She is not doing well and all tics are all over, some strange movements with her hand/arm. Very slow (hard to explain) Something is going on here and I do not know what it is. I figured this was my one shot to get an antibiotic again and see if it worked immediately again.....then I would know for certain without question that the antibiotic is somehow helping her. So.....I prayed and picked up the phone. I called the clinic where she visited on the 17th and told the nurse practioner who treated her that immediately after starting the Zith she improved dramaticially in all aspects and then after stopping it she started to go downhill again. And then nothing for a few days and then WORSE than ever. I explained to her that we were leaving in the morning and PLEADED with her just to give me another script for Zith until we got back and could figure this out. Also to see if it made the same difference as it did before. Well she said YES!!!!!!!!!!!!!!! I just picked it up and the pill looked different. I read the label and it says Azithromycin but in small writing below that it says "MFG TEVA- substituted for Zithromax. What is that???? I can not believe my luck with this whole ordeal. Almost like something is working against us. Hopefully this will work just as the Zith and have the same properties or ingredients. I am going to try and research it now. I just gave her a tablet...so I will try and update later before I put my computer away for two weeks or when we get to NY. What a lovely start for our family visit......Please pray for us!
  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 to have a more clear mind and a restful one while trying other roads and other things. Please do not get offeneded by me asking this....I am just curious, thats all. I remember the month very well (last May) when my daughters body jerks were so bad she almost fell off a chair. It was then we started Topamax and it was then my husband too cried himself to sleep. If things ever get like that again I just do not know what I would do. I getting running weary of trying to figure it all out. For some it seems so simple but I just can not get it!! The limitations of most things sometimes takes it toll on us all. We always eat healthy but it would be nice to once in awhile just go wherever you wanted to eat and not have to worry if the ticcing gun will fire. My daughter is never looking to snack on junk all day but you would think she should be intitled to indulge into that halloween candy from 3 years ago! Maybe thats where we go wrong...maybe its the little here and there of the bad things. If thats the case, well then I do not even know what to say. Wishing you a calm soon Faith! We have calmed to nothing and I feel as though a big heavy truck has been lifted from my chest. Finally I am able to take a deep breath again. I can not stand this, I really can not.
  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 the bottom of it LOL In regards to the topamax...yes it is a seizure med. Its also used for migraines and extreme weight loss. I have read a few things mentioning the help for OCD as well. We are on a low dose so its okay to stop. If we were on a dose that we should be (per her body weight) we would have to wean down. The doctor told me even at 25mg we did not have to wean down but I have learned alot and chose to wean down to 15mg for 5 days before stopping. It went well with no problems. Also if my daughter was having seizures and we were using topamax to control them...stopping suddenly could bring on more severe seizures. I have read alot about it and all the 3 neuros I have talked with also told me all the same thing. She has never had any side effects but we are also on a low dose and I refuse to go any higher and never will. Thats when it gets scary. So if this stops working well than I am not sure what we will do. I give it also at bedtime and this seems to work perfect for her. After talking with the neuro's practioner today I have deceided to wean down to 15mg again. (she has only been on the 25mg for 3 or 4 days) If things in a few days start to re-appear again than I will be convinced its the topamax at 25mg that stops it. I also mentioned that when we went to New York last time it all stopped so I really want to see what happens. This may give me another piece of the puzzle to put together but at least I will have something to start with again. I will be armed with the 25mg in case we need it. I do want her to enjoy this trip so I am bringing it. Also in regards to topamax and Pandas....EAMOM mentioned something awhile back how maybe its possible that the topamax helps with Pandas. It was something to do with swelling...I just cannot remember but I will try and look back now to see what I can find. Thank You all so much for trying to help me figure this out. I truly appreciate all of your feedback and thoughts. I will post as to what happens over the next few days. If things do pick up I am going to try my best to keep them to the point where they do not bother her so I can see what happens when we hit New York. Or maybe I will just do nothing for now and keep her on the 25mg. Gee I really have to say that I do not know what to do. I don't want to keep uping and downing the dose so this will be my last shot and I want it to help me figure something out! UGH I am so frustrated and don't know what to do. Thanks again everyone.
  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 one person on here than maybe we can all figure out why.
  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 bathroom trips subsided (these urges were out of control the whole two weeks on the 15mg) not to mention the weird confessing thing. Then after the Zith stopped the very next day the calm disappeared and sure enough the "I feel like I have to go pee pee but it won't come out" started again. The 2nd and mostly the 3rd day off from Zith was really bad as far as the hard wink (which is weird because its always only on one side of the face) so this brought us to Tuesday and thats when I started the 25mg again of topamax. She has been calm with minor eye movements over yesterday and today. So who knows....sure wish I did. While on Topamax since last May the only thing that popped through here and there was the need to pee and the facial wink on one side. They only came here and there and barely at all but each time she went on Zith the urge to pea and the facial tics stopped immediately (like the next day) I am too confused but I have deceided to keep her on the 25mg as we had been. I am getting overwhlemed again and so after we return from New York I am going to make an appointment with a new Pediatrician. I will just pay out of pocket so I can see who I want. My plan is to maybe visit Latimer or Creations own. I just want to make sure somehow someway that we understand for sure what we are dealing with. The only diagnosis we got from 3 neuros was that she has a tic disorder. One of them said she would qualify for a Tourette Diagnosis if a vocal came into the picture and the other two told us that she is not TS. Their reasoning was that TS tics are more swift and fast and that my daughter did not look like that to them. I never understood or figured that out! I gave up! Cheri....if you are reading this...I tried SO HARD with Dr. Franz to do the antibiotic trial (just to see) but got no where. I also stopped going because we lost our insurance and she was quite expensive for a sick call. Lastly to be honest I became very unhappy there as well because she only works a few days if that and so everytime we went to an appointment we saw one of her associates. It was a different one everytime and everyone read notes jotted down from the previous one and it got all too complicated to try and start from the beginning everytime we went. Also after waiting for a long time for our appointment...when we finally got in there and actually saw her...her cell phone rang...and she just wheeled her chair out int he hallway and we heard her chat and make dinner plans for the night. This seemed to upset me for I was a Mom that was SO worried about my daughter and pratically could not wait to see her and it just did not feel right to me. I apologize if you or some do not see the big deal but my daughter was at her worst and I was an emotional mess. I thought she should only take emergency calls while seeing patients. We continued to wait and listen to her chat and laugh. I was fuming that day. Thought it was rude and really figured we were not getting anywhere there anyhow. She wanted my daughter on fish oil and mag. We did though get the dry blood analysis from her but again unfortunately she was not even there to explain it all to us. The results were read and explained by yet another associate who did not even have the slightest background on my daughter. I tried numerous time afterwards to call the office and ask if the topamax was okay while taking all the supplements they recommended to distract the metals from her and no one ever called me back. I never called back at that point either and if you remember that is when we stopped that supplement program because when it got to the end when the fish oil and (something else that I can not remember) was started she had a bad reaction. I would be okay with a tic disorder and continue to treat it naturally or even continue with Topamax if we had to, but its the frequent urine thing and the weird confessing that bothers me. I think to myself that what if she is Pandas and I never treat it?? I hear that the swelling or damage to the basil ganglia is un reversible at some age. So this is where I am at and why I wonder about Pandas alot. If this is incorrect info please let me know.
  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 accepted on a program called child medial Services here in Florida but I have got to tell you that it STINKS! The new neuro was not any help, wouldn't script for OT for sensory therapy because he felt she did not need it! He should be here some mornings and try to get her socks on and things on without a melt down!!!!!!!!!!!!!! He also laughed at me when I mentioned food and the role it plays. He was old and set in his ways and wouldn't even write a script for the branded Topamax instead of the generic! I tried to explain she had a reaction to the tabs and that I was scared but he basically said NONSENSE!!!!!! I eneded up pleading with the old neuro who we do not even see anymore and he gave me the new scripts for the brand name topamax at 15 and 25mg. Not sure what I will do when it runs out. I am going home to see my family next week and after a rest I will plan my next approach and move. I am getting so tired of it all though. I could scream SO LOUD sometimes at these doctors who refuse to think outside of the med box!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  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 prior to the start of the Zith. The day after she stopped the Zith the facial tics came back and she seemed to me to be hyper and over emotional. She of course started to complain of not being able to stop blinking and so I called the clinic and unfortunately was not able to get another round of Zith. I just wanted to see if I gave her another 3 days if she would improve again. Then I would have fully believed that the Zith played a part in her calming. As usual I came to a dead end and unfortunately decided to up the topamax to 25mg (the same dose we were always on) and so now its been two days again on the 25mg and she is not as bad but still facial things. Today I added some ibuprofen and she is so far doing great. I will have to see how things are over the next few days. Interesting is that she also started to grind her teeth as well immediately after stopping the Zith. I am at my witts end in trying to figure this out. I almost feel I can not possibly keep track of everything any longer. As far as our diet....we have cleaned it up since the family left again. Its usually pretty good with the occassional slip up when we are out or something. I really did not want to start the topamax again! We are headed to New York next Wednesday for a couple of weeks (my family surprised us with round trip tickets)! Guess they miss us! The last time we went to New york she was not on any meds or anything and her tics completely went away. I wanted to see if the same thing happened but now I will not know if its the topamax or New York if they stop again! I am SO FRUSTRATED!!!!!!!!!! I just do not know what to do anymore. Its getting too hard to figure out this again. The neuro said when we are only on 25mg for two days its okay to go down to 15mg so I thought I might do that being that the 15mg never showed improvement much. This way I could get an idea if New York improved her. But I am scared that things will get really bad there and then what will I do? I am a mess again trying to decide what to do here. The only trigger I can absouletly identify is allergies and this took me since 2006 to figure out! Everytime she has claritin she stops rubbing her eyes and her black circles fade. I can not find a natural alternative to give the same results! If I knew that the trip to New York would stop her tics......I would move back home in seconds! If anyone has any ideas....I would surely welcome them!
  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!
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