myrose

I am confused with the mentioning of "sudden onset" Everyone that starts to tic has to start one day. From what I also understand, kids can start tics like tummy sucking and toe scrunching that are usually not always viewed by parents and others because of shirts and shoes so by the time they start a tic that one would notice....it would be considered sudden onset because the other tics were never seen??? Do you know what I am trying to explain? So again the sudden onset is confusing me. Unless you mean that the kids are tic free until they have strep and then the tics start immediately and after they dissapear again until the next infection??? This I would understand. Please help....

In regards to Dr. Murphy....we tried to get an appointment last year but I was told she was moving and no longer seeing patients (maybe new ones?) Then our neuro's nurse practioner mentioned she could possibly get us into a pandas study she was doing but that ended up going no where. I also understand that she prescribes drugs. Obviously I am trying to get away from the drugs and of course we are already back on topamax....so it became a dead end for me at the time. Today was another great day. I did not see a tic! This is weird. I am in a whirlwind of course. First its SO hard to figure out the triggers (too many possibilities) and now I cannot figure out what hepled!!! UGH!!!!!!!!!!!!!!!!!!!!!!!!!! It could be that the family has left, the topamax is kicking in, the diet has quieted down, the Zith, the molar is easing up, the advil, GOSH! I just give up. I went down to 15 mg lastnight on the topamax and have stayed there. If we can remain this way on the 15mg well than I am afraid we are going to stick with it until I can find another option that helps as much (if of course it is the topamax) My plan now if things remain this way is to do the cunningham blood test. Just to confirm she is not possibly Pandas. This would make it easier in deciding my next steps and ultimately finding someone who can help. Just have to read more on it because if the best time to do it was when she was bad....its already passed so I am not so sure if it would show anything. Have to research it. For now I will continue the 15mg and continue our normal diet now that the compnay has left. If after the Zith has stopped and she gets bad than I will suspect something with the Zith and that it helped calm everything. I know someone mentioned about the Zith not being enough but I can not get anymore...I already tried! I wish someone would just listen for once. I mean they feel (her neuro) its okay for her to take Topamax long term but refuse to do a trial of Zith to see if it helped and help point us in the right direction! This whole thing can really turn a normal person into a crazy one! I wish everyone well and hope that everyone has a new light around the corner. I am taking a deep breath tonight and thanking God we have got things somehow back to normal. I was so scared that I just was not strong enough to watch it continue to get worse for her. I just can not make heads or tails about this all of a sudden turn around!!! also am scared it will be short lived. I will keep posting updates, please pray for us.....I will and always do for everyone here.

Chemar, thanks for all the advice and prayers. Can I ask if your son ever had the frequent need to urinate thing? Also did he ever confess meaningless weird things to you? Example would be that while at Target we walked by the bathing suit rack and my daughter rubbed up against them as we squeezed inbetween them and she stated exactly this " I think I just touched the crotch of that bathing suit" This puzzles and alarms me. Why would she say a thing like that, I am thinking. I know everyone is different but I ask you because you have a diagnosis and of course we have none. And yes I agree with you and all on the topamax but my goal was to get off. I want to beat this thing while their is still some fight left in me. If and when she loses control as she did in the beginning I am afraid I will then have to resort to full dose (25mg) topamax and stick with it. Maybe I felt we were at that point and about to cave but after todays improvement I want to see what happens over the next few days. Thanks again Cheri

Lurker..... I thought of this as well too. The puzzle is that it started before they arrived and was already progressing. Lastly we had the same family members last year and it did not effect her. I know things could have been different for this visit so I can agree with you but I am just puzzled and sick and tired of playing the guessing game all over again. I guess I just wish I knew what it was for sure. There are just too many possible triggers with this round and to be honest I am so tired inside my head if you know what I mean. Its still not as bad as it was when we first resorted to topamax so I should be thanking GOD for that but its still hard for her and that is when it gets to me. I hate feeling helpless! Thanks for your thoughts and reply...much appreciated. I need all the help I can get

I can't say the ibuprofen helped the tics but we have the same effect with it today as I did the day we were at Wet/Wild. What I mean is that she still ticced that day but there was an overall calm about her. She always disagrees and finds it hard to listen or believe that she is wrong about something. The loud talking and non-stop talking and interupting has always been there as well. I swear sometimes she has ODD. Anyways again this time the ibuprofen makes her so calm in a way I find hard to explain. She is not dopey or sleepy but just a normal calm girl. Wish I could explain it more. I will continue with the ibuprofen along with the Zith over the next two days and see if it lasts or even gets even better. Seems interesting to me but yet again something I do not understand. I really do not suspect her to be Pandas but this now again along with the CONSTANT urine and confessing has AGAIN made me re-thing everything. This whole puzzle seems to never end for me......I am so truly tired of it all. I wish there was a blood test fot TS, tics and Pandas that was a definite and something that all doctors ageed upon. Why don't you try the ibuprofen? Couldn't hurt. My daughter is turning 7 and 48 pounds and they okayed the whole tab. I think its 500mg but I could be wrong. Sorry to say that I just do not feel the energy to get up and look. I hope things get better for your son quick. The potential triggers are becoming overwhleming for me. And now this slow down all of a sudden. Too many people at the house, too many things we did to excite or stress. The chlorine from all the water parks, the head injury, the the molars, the teeth coming out, the junk diet!!!!!!!!!!! I can't keep it straight any longer Please keep me updated on your appointment with Latimer...maybe it can shed some light over on my end as well. I will go where ever she is as well as Dr. Sims......if only I can get more info and positive feedback. Gooodnight

Went to the clinic today. No ear infection that she can see, in fact she said her ears look perfect. She then listened for popping while she opened and moved her jaw to maybe rule out TMJ. Anyway she said something was swollen after feeling her throat but I have forgot what she said. It wasn't important I guess. She did give us an antibiotic (Zith) for 3 days- 250mg each. She did this in case things get worse and also because apparently the other doctor we saw there at another time told her that antibiotics help my daughter. She was nice and being that my daughter is almost 7 and has only been on antibiotics a handful or so times.....I filled the script immediately afterwards and gave it to her. I also gave her one tablet of ibuprofen. Now here we are about 10 hours later and she has improved significantly! I have no idea what is going on now......Even the frequent need to urinate (in which I forgot to mention returned in FULL force) has calmed a bit. I cannot possibly think that the antibiotic could help or work so quickly so I am just dizzy inside my head right now! I did notice when we were at wet/wild and the jaw clench started, that after I gave her the ibuprofen it didn't take the clench away but she was really quiet and calm afterwards. That was the first time I ever gave her an ibuprofen and I forgot about the effects I had noticed. She was even quiet, and I can tell you that my daughter NEVER stops talking. So could be the ibuprofen, the Zith, things just calming????????????? I give up right now. I will just have to wait and see how things go over the next few days. Right now its really calm and good and so I will enjoy it with her and put the computer to bed. She is also back down to 15mg of the topamax. I gave her 25mg for two days but did not see an improvement like I did when we upped it in the beginning so if its not working I'd rather not continue with the 25mg and have to wean down again after things calm down. If anyone has any idea on what happened today after the Zith and ibuprofen I would really love the insight.

lss.....just curious if you have been to Dr. Sims or have a scheduled appointment?

Forgot to add that my daughter cannot open her mouth all the way. She said it hurts to much. I had trouble brushing her teeth tonight because she couldn't open all the way. I am headed to the clinic tomorrow.

Thanks for the email. I will try anything as of now. I am starting to believe and feel that with all the possible triggers that its impossible to keep her from all of them. She just wants to be a kid and have fun. I am doing the best I can but avoiding things like chlorine would mean no water parks for her. We live in Orlando so its so unfair for her and cruel. I think that if this started later on in life for kids it would be easier for them. I as an adult would choose not to eat or do certain things that may effect me and understand it more. But a 6 year old child doesn't quite understand it that way. Its effecting her emotinally and I am scared of this for her future. She is less outgoing everyday. I will email her.....Will she come on here? and tell her story? Is she the one on the video on the website? If this thing really worked for my daughter I am worried we would have a big problem with some kind of device in her mouth. She already has sensory issues and so that may put her over the edge (even if it did work) But I am willing to go.......I am though waiting for a reply on here from Faith.....she is going and I want to hear her report before calling Dr. Sims. Thanks

Just wanted to add that if money is an issue in regards to the book by Shelia.....I bought mine on Amazon.com for a few bucks and someone else on here bought one on ebay for pennies. It truly is a good book and I feel Sheila's book is the best out there. I am not done reading the 2nd book. I am in the tracing of the triggers checklist.

So sorry its been awhile since I updated. Our 10 family members visiting from New York turned into 14 people and we are now down to only two that fly out in the morning. I have not even had a chance to pick my computer up over the past week or so!!! My daughter continued to progress and it was awful. We hit the waterpark Wet/Wild shortly after our first guests arrived and she began to cry in line before we were even in the park. This is a 6 year old girl who has always wanted to go to the this park and was so excited until the mouth clenching started that morning. She continued to cry and even thought she wanted to leave the park before we entered. She was an emotional mess...she wanted to leave but has been waiting for this for over a year so wanted to stay. I ran to the gift shop and purchased some ibuporfen and gave her the whole tab. This seemed to work just a bit and I just tried to keep her mind off from things so she could enjoy herself. She kept biting down on the left side of her mouth and she said everytime she bit down her eyes would blink hard as well. She looked to be in alot of pain. I immediately took her to an emergency dentist visit the next morning and all her xrays were okay. She does have her 6 year molars coming in but the funny thing is that the one that has already come through and has no skin still covering it is the side that gives her so much pain. It progressed that night again after the dentist and she would not stop crying so I resorted to topamax at 15mg. It seemed to take the edge off but would come and go and then just a few days ago it got really bad again. I am not sure if this is a tic that makes her bite down or not but its so painful for her. She started to hold her bottom jaw out to the left. I then resorted to 25mg of topamax to find her some relief. Its been a few days on this but it has not helped yet and am not sure if it will. She has been into and got into some many possiblr triggers over the past 3 weeks that I lost control emotionally. She has teeth coming in (one came out yesterday as well) she still has a slight black and blue area from the head bump at camp and I can not even count all the JUNK we have had to eat over the past week and a 1/2. With 14 people we mainly ate out. My brother has triplets that will be turning 4 in September and she wanted to eat everything they were eating. I felt so bad when I tried to reason with her. My brother also made her breakfeast every morning along with the triplets and it mainly consisted of cookie ceral and frozen garbage! She just wanted to be like all the others and eat what everyone else was. It was a truly difficult time for me and her as well. She was already ticing pretty good and I just wanted her to stay calm, so I let her eat what she wanted. So now the topamax doesn't seem to be working like it did before. I also do not want to keep her on it. I basically have to start from square one after the last few leave out of the house tomorrow. I tried the tic tamer I finally received a few days ago but only gave it to her once. I want to research and see if it will react in any way with the topamax she is back on. I will do this as well after the last of the family leaves. I was so torn emotionally. I have not seen my brother and his triplets in over a year and I was so excited to see them and spend time with them but constantly in the back of my mind I was thinking of my daughter and how much pain she was and is in. I feel as though I am falling apart again. The only good thing is that the severe body and head jerks are not here. But then I think that those at least were not as painful as the ones now. Intersting to me now and also puzzling is that the pain in her jaw was full blown today with the biting down and hard eye wink, but its only on one side. And then after her shower just a little bit ago I was cleaning her ears with the safety q-tips I always use and she complained of pain on the inside of her ear. This is the same side that the pain in her jaw is. I am now thinking I should run her to the clinic tomorrow and have someone check her ear. Maybe its connected??? Gosh I just do not know anymore. I am exhausted as well with all the things we have been doing and all the people here. My daughter did get to do and go alot of places we have never been. My Mother purchased tickets for her and all of us to enjoy Wet/Wild, Universal, Aquatica, and as a surprise she took all the kids to the bippity bop salon at downtown disney and they got to pick out who they wanted to be made up to look like. My daughter chose Hannah Montana. They were all adorable! So I guess with all the things going on it helped keep her mind off from things. Anyone have any suggestions as to the ear pain (just inside) and it being connected to the jaw biting down?????? This seems strange to me and I am just wondering if there could be a connection somehow. Sorry so long.....its been a LONG week and 1/2!! Hope everyone is well. I am also so very interested in the Dr. Sims reports. How does he use the tounge depressors? Does he have them bite down on them?? I would try this at home with my daughter to see if the jaw thing stops. If it did.....well I would be on my way as well. Just abit scared yet to get my hopes up high and come falling down flat on my face and heart as always. I wish I could just take the tics from her, I would rather me deal with it than her.

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.

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.

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.

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.

I wish I could understand this all a bit better. I have been reading but feel I am a bit brain fried from all the reading and research over the past two years! Its been proven that certain foods can lessen or relieve tics so what does that have to do with the alignement? Do you think all the doctors are right and that food does not play a role in all this.....they say its all the wax and wane..... I am not saying this is true...I have for sure identified some triggers but everybody (doctors) continue to look at me like I have 8 heads when I have mentioned food as a part of it..... So I am now REALLY confused!

Something just came to my mind.....what about those who's tics eventually go away??? or even get considerly less Does this temporomandibular joint re-align itself at sometime?? Sorry for all the questions....I know I should call and ask myself but I am not there yet (if you know what I mean)

Just curious as to other conditions that come along with the tics/TS like OCD, sensory disorders etc... Does it help with the whole package or just the tics? Secondly if the tourette gene is into play girls can have just OCD as a symptom and not display tics....so would it help the child that just displays OCD as a symptom of tourettes?? Lastly, Is this thing comfortable for someone to wear? can they talk normal? what about teeth brushing if you have it glued like that Mom stated?? Sorry so many questions...I will admit this still does have my curiosity but not completely comfortable with it all yet. Can't WAIT to hear replies from the first visitor there! Isn't that you CSP????? Maybe tics can be triggered from some form of TMJ and these are the patients thet are benefiting???? Gee I really wish someone was going tommorrow!!!!!!!!!!! I can't wait!!! to hear about it!!!

Just wanted to quickly update on her....I picked her up from camp and they said she was fine all day. I anxiously got in the car for the ride home and kept the radio off on purpose. NOTHING! Not a peep. We went out for a walk after dinner and nothing all night and now she is asleep! I am more confused than EVER before. I am wondering now if it was a tic to begin with??????????? This is all just too confusing for me at this time! I am happy though, I will see what tommorow brings and hopefully we can get back on track with being tic free. I gave nothing today...as far as magnesium and everything. I will continue with the claritin tmorrow morning....she was rubbing her eyes all afternoon again and said they kept getting watery.

Although I was not with my daughter long this morning before I dropped her off at camp....I didn't hear the vocal. I did give her the liquid ionic magnesium lastnight before bed (1/2 the adult dose, 1 tablespoon). I will have to see how she is when I pick her up in a few hours. I also thought about the teeth issue and I now realize that the teeth have been like that for some time so wondering if it is the teeth, why would it effect her now? The only thing that happened immediately before the vocal started was the head injury on Friday afternoon...vocal started Saturday sometime but was very mild. Yesterday it intensified. (this was also when she was exposed to MSG) I will update after I spent more time with her today and talk with the girl who is in charge of camp. Funny how I waited all morning even the whole ride in the car to camp and I heard nothing.....yesterday was a totally different story! She has two full black eyes now but just the lids not underneath and the swelling is still there but not as bad and appears to be going down.

Me again.....also keep wondering about the claritin allergy tablets. I stopped them on Saturday as planned and this is when this vocal thing seemed to appear. Wonder if I should try the claritin tabs tomorrow just to see??

I will start with the magnesium tonight. I have the ionic liquid one. Hopefully this was triggered from something and it will settle down and I can identify it quickly or at least get to the bottom of it before school starts back up. Cheri...she had no signs of concussion and was cleared with x-ray only. My friends own a health and wellness center and they took an xray for us in which we took with us to the hospital after he thought he possibly saw a fracture. He couldn't say for sure (he is a chiroprator) They did not want to do a ct scan because she was already past the 3 hour window of concern and the neuro stated that they really do not like to expose children to these types of scans unless absouletly nessasary. He said that they just do not know the effects these scans will and can have on children 10 years from now. The x-ray he said is just like 3-days of sunshine. She never got dis-oriented, sleepy or vommited and acted completely normal so they gave her the okay after viewing the x-ray we brought. Thanks for all the advice, I will keep you posted. I have never seen/heard vocal tics before and its quite odd. I am just thanking the heavens above that this is not bothering her at all. Have a good night everyone

powerofprayer.... The OT was and is for Integration Sensory Disorder. She has a lot of trouble with clothing and things. I remember once when the shower felt like pins and needles to her. It comes and goes now which is a mystery to us. This week she is wearing everything she would not ever normally wear. Then lets say in about two weeks from now she will have trouble wearing her school uniform top because of the logo stitched on it. Then it will spread to everything is uncomfortable! And then it goes away again. I/we deceided to continue with another evaluation and therapy to make sure it never gets as bad as it was when it started.It also seemed to benefit her in my opinion but money got to be so tight at $350.00 a week for it that we had to stop for a bit. Now we will start again and also do all the recommended timing and lenght (she is covered on a program now that covers all of it) What a relief!

Well its been a long week for us here. My daughter has been off from topamax for 14 days today. She remained tic free until yesterday. I am trying to figure out what happened because there were and are a few issues that could have caused this vocal thing to start. I need help! First is that she banged heads with another child on Friday afternoon. They hit pretty hard! We ended up taking my daughter to Arnold Palmer childrens hospital. She is okay and has a hematoma above her left eye. They gave her the okay after everything was done and said that it would drain down the face. Well it is....she started with quite an egg potruding out above her eye and the swelling continued to spread over her forehead and down her face. Today she has swelling and two black eyes and most of her face is bruised. It was quite an ordeal to say the least. Next is that the x-ray a friend had taken before we went to the hospital showed she has teeth ALL OVER coming in. You can see her molars when she opens her mouth, two of her bottom are loose and several are pushing through that we can see in the xray. Next is that I stopped giving her the allergy medicine (claritin tablets) Next is that as I mentioned in another post she has got into some "not so good food and snacks" at camp last week. Lastly......and most alarming to me is that TODAY she had some chick-fil-A at camp.....this contains MSG!!!!!!!! I sent her in with her lunch but she was asked if she wanted it and she took it. She started this vocal thing (a hmmm or grunting sound not sure how to explain it) yesterday or possibly Sunday. But today after I picked her up from camp its more noticable and constant and not as faint as it was. Also the docs at the hospital were talking about her tic dis-order (I hate when they talk in front of her) it makes her tic. She wasn't ticing though Friday after we had seen them. Just thinking it could be part of the ocd issue with her after remembering someone talk about her condition and not being able to forgot about it thus starting the tics??? I am confused! Exactly what I feared seems to have happended and that is and was that too many things happening at once would leave me confused as to what might have started it. I am leaning towards the MSG possibly aggravating itl right now because the sound is so intensified today. But I just do not know. The good news is that its not bothering her....if its not bothering her than it doesn't bother me. I should mention that we have never had vocal tics before (that we were aware of anyhow) HELP!!!!!!!!!!!!!!!!!!

They also make the cream that you can apply after the pool. We used it last year. I purchased mine but you can easily make it in the microwave....