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Explosion of a vocal while on Topamax


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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!

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wendy, that is the generic form of zithromax

 

I do hope it helps stabilize her again. If it does, I think you may well have another pointer in the direction of an infection being the root cause of her tics etc

 

praying things calm and that you are able to have a good time away

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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!

 

 

Wendy,

 

The movements that you said your daughter was doing, did it look like she was playing a piano with her hands? If so, this is another symptom of Pandas, chorea like movements. Zithromax is the name brand and the pills are usually pink/redish, the generic are white and go by the name azithromycin. Sometimes the generic are better for the kids, because they don't have the dye.

 

Good luck in NY.

 

Linda

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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

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Hey Wendy,

praying the antibiotic works and that you have a good trip.

 

Deanna

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TEVA is a generic manufacturer. The Zith should be the same.

 

Is it 250mg and how many days did she give you?

 

If she is PANDAS, it does not have to be strep A to cause an increase in tics. I t could possibly be a virus or other bacteria. Mycoplasma pneumonia or other types of strep that a strep A culture would not show, could be the cause.

 

My kids have have major PANDAS flareups and the strep A cultures were negative, BUT b/c we did upper respiratory cultures (shows other bacteria and other streps), we found out they had "beta strep, non- A strep). Routine strep cultures, including rapid strep tests, only show up strep A.

 

If she responds positively, try to get a longer course. Good luck and I am thinking of you!

 

Colleen

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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

 

((((((((((((((Wendy)))))))))))) you have been through so much recently that I do hope you are taking care of your own health too!

 

Yes, I am wondering if infection may well be the major trigger for her.

 

I dont know if the term PITANDs is still used but that was suggested to us as a possibility once they told us my son was not PANDAS. It stands for Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders, and the way it was defined back then, PANDAS was seen as a subset of PITANDs, with PANDAS related specifically to strep, while others are triggered by assorted microbes...bacterial, viral, fungal, amoebic etc

 

I dont know much about topamax other than that it is given primarily as a seizure med, so not sure why it worked so well before and where that fits into the big picture of what is happening with your little one.

 

but the fact that the zith had such a dramatic improvement and then a regression again when it was stopped just seems to point to an infection component IMHO...I am not saying this is the only thing going on, but, like with my son, an aspect of the whole issue

 

when he was treated for the candida and the epstein barr virus, we saw a big improvement, primarily in his OCD

 

as I have mentioned before, he periodically still takes natural antimicrobials (monolaurin, candida clear, honey, ginger, garlic etc)

 

praying you will have a good trip and soon have the answers you need to move forward in her healing

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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.

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Praying tomorrow is a better day for you and that your trip goes well. Try to get on a computer while on vacation and let us know if you need support!

She may have been sleeping b/c she has a cold or is needing the rest from what's going on with her body??? Maybe? I don't have any answers but will be praying for you!

 

 

Bonnie

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Wendy

Hoping today is a better day for you and the antibiotic kicks in. Funny again the similiarity to my son and your daughter....he is making the same type vocal right now, even on the topamax. He did the same noise last year, started in the summer and went on until about when the topamax started. It was not as constant in the fall but it was still there. It is not really loud and it is just a sound I catch me and my husband making when in a convesation and agreeing with someone but ours is controllable and his is not.

 

I had hm at the ears, nose and throat doctor monday and we are taking him back for food and allergy testing in Sept. but he did say from checking him out that his tonsels are a bit enlarged, not enough to take out and he saw a sign that he does have allergies---has some white dots back in-- so I am hoping that once we do the testing and find out maybe that is a problem for him. I asked for a strep test but didnt' get one done...they sounded like they would do it and then didn't.... I then went to our pediatrician yesterday for his last shot he needed and a checkup and asked him for one and explained the PANDAS idea but again he didn't do one, he said he talked with a well know doctor about the PANDAS and they just don't buy into it..... not that it doesn't exist but the antibiotic could be helping something else in the body and not the strep... .IDK guess next time he gets a little sore throat I will take him in and then they will have to do on....

 

Again Wendy hugs are coming your way,please take care of yourself so you can take care of your little girl....words my mom is always telling me when she sees the stress I go through wanting to help my son and not much I can do.

 

mary

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I had hm at the ears, nose and throat doctor monday and we are taking him back for food and allergy testing in Sept. but he did say from checking him out that his tonsels are a bit enlarged, not enough to take out and he saw a sign that he does have allergies---has some white dots back in-- so I am hoping that once we do the testing and find out maybe that is a problem for him. I asked for a strep test but didnt' get one done...they sounded like they would do it and then didn't.... I then went to our pediatrician yesterday for his last shot he needed and a checkup and asked him for one and explained the PANDAS idea but again he didn't do one, he said he talked with a well know doctor about the PANDAS and they just don't buy into it..... not that it doesn't exist but the antibiotic could be helping something else in the body and not the strep... .IDK guess next time he gets a little sore throat I will take him in and then they will have to do on....

 

 

mary

 

Hi Mary

as a patient one surely has the right to insist a doctor do a routine test like for strep? you cant insist on the medication/antibiotic, I guess, but you can insist on them doing a strep test I would think. It isnt invasive, nor, as far as I am aware, does it need insurance approval to do a throat culture for strep???

 

honest, when doctors take that attitude, I would say goodbye and find another. no way I could stay with a physician who refused to realize there is more to health, disease and healing than they already know! all it would take is a little personal research on their part...a few hours just on the internet...to see a clear pattern of parents OBSERVATIONS from daily living with their kids. For physicians to simply shut the door and refuse to even look deeper than "speaking to a few (probably equally biased colleagues :) ) is typical of why so many patients are seeking alternative medicine and peer support groups like this one.

 

I dread to think where my son would be today had I listened to that neuro who told me only medication & psychiatric care could help, and that the "other stuff" was "all conjecture without any evidence"..............

 

I have all the evidence I need....................my son!! who is so very much better than when he was following "conventional" treatment

 

sorry for the rant, but honestly it really gets to me to hear doctors be so totally dismissive of something they just dont have experience or knowledge of! :huh:

 

 

 

 

Wendy, sure hoping today is a better day and that your time away will be safe and peaceful and relaxing :)

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Just my two cents, but a strep culture is a simple, non-invasive test that an ENT should do on a child JUST b/c he sees enlarged tonsils, even in the absence of any other symptoms.

 

Were you saying that he saw some white spots on or near his tonsils? If so, that is a huge red flag that strep must be ruled out. I just can't wrap my brain around the practice of some physicians. I would go back to my pediatrician and ask for a strep culture. If for some reason he says no, you have the right to insist he do one. The danger with not doing one is that many children have active strep, but have no physical symptoms, so they get worse and worse as the strep goes untreated.

 

Good luck!

 

Colleen

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