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I am so curious to see if it was the zithromax or topomax. I am right in the middle of both. My son was doing so well with diet and zith and then he got diahrrea and I thought maybe it was the antibiotics I made a decision to stop and give his system a rest. Thing is he also went off the diet around same time. His tics got bad a week before going off zith so I thought maybe it really was his gut having problems. Trying to keep diet clean but tics are still bad.

 

The question is do I stay off zith or try again. Did the moms using topomax find that they still keep diet strict? Can't believe this journey is never ending. Kathy.

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Hi Kathy...sorry to hear you have having a tough time.... know how you feel. We put our son on topamax around Christmas and he did very good up until about 1 1/2 months ago--not sure if it was the switch to generic or not but he was on that for a month and after two weeks vocals started and about a week later facials.... and now for about 5 weeks on the topamax. We were not very strict with his diet--just the obvious things like we tried to keep red candies away from him....he had a pretty bad outburst of them after eating a box of Hot tamolis(sp?) on our way to the beach last year. He is still ticcing...a vocal hmmm and usually a face tic goes with that....but he was really bad back before he was on it...never stopped ticcing...not for a day or an hour...now he does have some still times....like if he is telling me a story and concentrating on it...he does nothing...but if watching tv, playing cards or just running around he does them

I never did the antibiotics for him........not sure if that would help.... but i do have an appt. with a nose,ears and throat doctor to get a strep and some allergy testing done to see if there is anything there.

 

HTH

Mary

 

I am so curious to see if it was the zithromax or topomax. I am right in the middle of both. My son was doing so well with diet and zith and then he got diahrrea and I thought maybe it was the antibiotics I made a decision to stop and give his system a rest. Thing is he also went off the diet around same time. His tics got bad a week before going off zith so I thought maybe it really was his gut having problems. Trying to keep diet clean but tics are still bad.

 

The question is do I stay off zith or try again. Did the moms using topomax find that they still keep diet strict? Can't believe this journey is never ending. Kathy.

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thanks for the response. Not sure the zith was the whole answer but it did help my son recover from a severe strep infection that had turned into what I believe was rheumatic fever. Took many months before he could actually get over severe fatigue. I am not sure whether it was helpful with tics or not or the fact that I really had him on a strict diet and after months of that he was getting better. He had several weeks of no ticcing but of course short lived.

 

Still trying to figure out triggers. He is 12 and I am letting him decide if he wants to try topomax if we can't get a handle on this. So far he doesn't. Thanks again, Kathy

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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!

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Hi,

we are on Topamax but ny sons tics have been really bad over the last couple weeks--I really do beleive he exhibits all symptoms of PANDAS he has a respirtory thing going on now but was negative for strept I am tring to get a hold of his pediatrician now to get some antibiotics on board until we see Dr. Latimer--He has a pretty clean diet with an occasional slip. I will keep you posted on our appointment.

 

Deanna

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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!

 

 

Wendy,

 

If I were you and while you are in NY, if your child gets worse, take her to a walk-in clinic and tell them you think she might have strep again, and ask that they give you the azith. I really think your child's symptoms are more Pandas. Also, you should give her a probiotic, but not along with the antibiotic. Enjoy NY!

Linda

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Wendy,

She did so much better on the Zith and regressed when off the Zith. I think that is the biggest clue that it is PANDAS and would try to get more antibiotics. Is your doctor completely opposed to prophylactic antibiotics. It seems like she improves whenever she is on them.

Colleen

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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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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myrose,

the way I was able to once get antibiotics to try was that I just made a regular appt with my son's regular pediatritian and even tho we had already been to an Infectious Disease doctor to test for the titers and PANDAS (which did come out pretty much low), I told the doctor that he was having a waxing of his blinking twitch and explained how even tho he didn't seem to fit into the PANDAS that the time he gave us antibiotics for strep a little while back, that he seemed to stop the excessive blinking (this was true, so that's why I was interested in seeing what would happen this time). I asked if he would consider letting me try it again just to see and he was all for it. He said okay lets try it and you let me know, it can't hurt him. So I did get it and give it to him (I forget which one it was, but not azith), however I didn't really think it helped that time, so didn't persue it any further. But my point is that it just takes one doctor to not think its a big deal. Maybe you should just mention it innocently and look a little scared and desperate like I did and who knows? Do you know anyone in the medical profession, even your own ob/gyn might know you good enough to help with the prescription. just a thought.

 

oh and if you really want to get crazy, you could buy a roundtrip ticket to Cancun, for I think you can buy antibiotics and some prescription drugs right at the airport! lol. I got me some nice retin-A creme last year!

 

 

Faith

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myrose

 

it may help to consult a regular doctor (pediatric or GP) rather than a neuro for this.

Did you ask Dr Franz if she would rx it as a trial?

 

IMHO neuros have ranked as the least helpful to us . we no longer go anywhere near them.

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I've been trying to follow this, but maybe I'm confused. Why does everybody think that the zith controlled her tics as opposed to the Topamax? She took both concurrently. The Topamax is prescribed to control her tics; the Topamax worked VERY well before.

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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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

 

hiya myrose

 

im newish to this forum so, sorry I dont have any suggestions for you, just wanted to say that I know how you feel getting tired of it all....theres always so many variables its hard to work out whats making a difference and whats not.

No one has ever mentioned topamax to me as an option, I'd never heard of it before I read about it on this forum....I could scream out loud at doctors who have no knowledge whatsoever of TS, and who have even never heard of pandas!!!!!!!!!!!!!!!!!!!!

hang in there, doing something (even if it dosent seem to work) is better then standing by and letting things just 'happen', Im sure as she gets older she will come to appreciate all your efforts,

chap

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Lurker,

 

The reason I think it was the Zith that helped her is b/c after the first day of taking it she saw and improvement. Upon stopping the Zith, she saw a regression.

In the past when she has taken antibiotics, she has seen an improvement. She has a history of strep, that when treated with antibiotics, gives her a marked decrease in tics.

 

Colleen

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Thanks, Colleen. I didn't realize she had a history of zith stopping the tics. I just knew that the Topamax completely stopped them for close to a year, until she had been completely weaned off of it. Tics do fluctuate, but to be tic free for a year while on Topamax, in my mind it deserves the credit.

 

Myrose, how many times has she been on zith?

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Hello,

I have a question is there a window of opportunity that if you suspect PANDAS it should be treated I guess what i an trying to say is if you suspect PANDAS and are jsut getting treated a year later is the prognosis as good as if you had treated right at onset??

 

Deanna

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