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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.

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MyRose

 

I'm so sorry your child is having to go through this all over again. On a much brighter note, I spoke with a lady who lives in Orlando who took her child to see Dr. Sims. You must talk to her. Her name is Gail, she asked me not to give out her phone number, but you can email her and then she will call you. Her email is: TGLINCOLN@aol.com

 

She was very nice and gave me alot of detail. Please email her, I think she may have answers for you and others.

 

Good Luck,

 

Linda

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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

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Hey Wendy,

read your post and got your message sorry things are not going well we are having a tough time as well. not sure what is triggering Anthony but feel your frustration --we see Dr. Latimer on the 5th--saw Dr. Singer at Hopkins last week gave me no more insight than I already have and is completely old school with his thinking. anyway hope things start to settle down. talk to you soon.

 

Deanna

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Wendy,

I'm so sorry to hear that she is not doing well. Remember it was really bad last time too, and the Topamax worked. Please don't give up yet. You said you have only had her on the 25mg for a couple of days. It worked before; it should work again. Things will settle down soon. Hang in there.

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Wendy,

 

I have talked to the nurse at the office, that is how I got in touch with Gail. I will be calling tommorrow to schedule appointment for my son as well as one with Dr. Latimer, just in case the device doesn't work for my son.

 

Linda

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(((((((((((((((myrose)))))))))))))))

 

so sorry to hear that things have not been going well

 

please consider having your daughter checked out for a possible ear infection as yes, infection can trigger more tics! the fact that it is all on one side may well be connected....or.....the biting down and jaw tic may be causing the ear pain....but it sure is something to have checked out

 

I know with my son just a tooth being lost or one coming in would trigger tics.

 

I continue to pray for you and her

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Myrose,

 

It is really good to hear from you, we were all wondering how things were going. My husband did take our son to see Dr. Sims Tues. and he really did like him. We are going to see my son's ortho Mon. if you did not remember he already has braces. I think the the thing most people should understand is you will not get the sense that "Wow I have found the cure for my child" as you leave his office because he first needs x-rays, so you have the sense the visit is not complete. My son has no motor tics so there was no tics that stopped as he put the sticks in his mouth, only that my husband could see his jaw and mouth/lips line up better then they are naturally. My son did not feel any different and also did not tic for the 2 hours they were there.

 

I think you may have a really good reason for taking the trip to see him if your daughter is having jaw pain and can not open her mouth all the way. Dr. Sims did all kids of things to our son's face looking for pain and he could do things in the office to get an idea of the jaw, but really needs the x-rays to see if there is a gap where the upper and lower jaw meet.

 

To be better prepared you may call his office and get the names of the x-rays he needs have those done before you take a trip to see him then he could get started. If you choose this is a trip you want to make.

 

I guess what i found to be the best picture in my head was how the Dr. discribed the nerves. He said they were like the hair on your arm, all you need is a breeze and you can feel the tickle.

 

Glad you are back,

CP

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Wendy

I am so sorry things are going so badly right now for you... . My son is going through a tough time right now also, but getting a bit better. He was taking the generic topamax and within 2 weeks of it he was making vocal sounds and about a week later started with some head and eye movements. It took me 32 days to get the regular topamax for him and now it has been a month on it. After about 2 weeks and not much change i did up to 75 mg- 1 morning 2 at night just to get it back in his system, once things get better i plan to drop a pill. Through the generic time he had lost two molars, got hit on the head with a baseball at practice and we went to the movies (which we seldom do)...not sure if any of that has a bearing on it or not. He also put himself under alot of stresss since he was picked for the allstars baseball and just wanted to do good so badly. Right now we still have the sounds but facial tics seem to only happen with the hmmm noise he makes. he can control it when he needs to but when relaxed watching tv, playing cards ect... he does them. Things are not nearly as bad as they were back last year before the topamax but not like they were after it either. he complains alot of tightness in his chest and burning. Not sure if that is do to the sounds he is making or if that is causing the sounds. We took him to the chiropracter this week, hie seems to always have his head tilted when sitting and wanted to see if he was out of alignment causing his headaches. She said his head faces forward more than it should and gave him so neck exerices to do.... We also have an appt. with the nose, ear and throat doctor to see if he has any sinus problems...gets really stuffy alot and flemmy.... want a strep cultture done also because he had been around kids alot with strep and had bad sore throats but usually got better before having to go to the docture...want to do some allergy testing with him. And lastly we are going to a lady that will do a hair analysis and is an RN nutritionist to see if he is lacking any minerals or vitamins. Funny last summer was when he started making the noises and then he started this summer again...not sure if there is a connection or not. It is so hard when things happen all at once to figure this out. I was so happy the last few months when things seemed to settle down, so much more relaxed...now this seems to occupy my thoughts constantly.

 

My prayers are with you to give you the strength you need to get through all of this.

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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.

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Wendy,

 

The first thing that comes to mind is that you had a house full of guests, including triplets, that are gone now. Things have settled down, and that is my best guess as to why her tics are milder now.

 

I'm sorry to mention the Topamax again on this board, as I know people prefer natural treatments, but like I said yesterday, you only increased it three days ago. I don't think you gave it time. It worked miraculously before. It was SUPPOSED to take weeks to take effect, but you saw results right away. Doesn't mean it will work that quickly this time. Remember, it took weeks for the Topamax to wear off and the tics to resurface.

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Hey Wendy,

gald you have some peace hope it lasts---don't know what is going on with Anthony he is ticing like crazy I was just telling my husband i don't have a clue what it could be--I can't wait unitl my appointment with Dr. Latimer. He has come off his diet a little but he has come off before and never had tics like this-- i hate this not knowing. I have seen other people claim motrin works i was just wondering how. His rapid strept was neg--other culture not back yet. keep us posted.

 

Deanna

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