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Last night on Topamax


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My daughter was on 25mg of Topamax for almost a year. We started to wean on Wednesday night with only 15mg.

Tonight will be her last dose of 15mg.....

So far I have seen nothing. We did have some eye rubbbing and possibly some blinking that started to scare me so I started her on claritin tabs as well and the eye rubbing and blinking stopped immediately.

This is good news to me for I am now positive allergies are a trigger for her.

That makes two certain triggers for us: MSG and allergies.

 

She seems to have the allergies with the eyes and nose only around this time.....so claritin will not be a long term treatment for us but for now its working and we will stop as soon as the end of June nears.

(That is when her nasal congestion usually goes away)

 

I am not sure how long the Topamax will take to get out of her system or if even her body has recognized the lower dose yet but I am on HAWK ALERT over here.

In other words...I have been watching her like a Hawk! My heart beats so fast again!

I am ready to go with some supplements if things should appear but so far so good! I am too scared to get all excited and have a relax party just yet...I will keep posting as the days pass. Please Please Pray for us!

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oh i hope it continues to go well for you.......... I will keep you in my thoughts and send healthy wishes to your daughter....

 

thanks for the updates!!!

mary

 

 

My daughter was on 25mg of Topamax for almost a year. We started to wean on Wednesday night with only 15mg.

Tonight will be her last dose of 15mg.....

So far I have seen nothing. We did have some eye rubbbing and possibly some blinking that started to scare me so I started her on claritin tabs as well and the eye rubbing and blinking stopped immediately.

This is good news to me for I am now positive allergies are a trigger for her.

That makes two certain triggers for us: MSG and allergies.

 

She seems to have the allergies with the eyes and nose only around this time.....so claritin will not be a long term treatment for us but for now its working and we will stop as soon as the end of June nears.

(That is when her nasal congestion usually goes away)

 

I am not sure how long the Topamax will take to get out of her system or if even her body has recognized the lower dose yet but I am on HAWK ALERT over here.

In other words...I have been watching her like a Hawk! My heart beats so fast again!

I am ready to go with some supplements if things should appear but so far so good! I am too scared to get all excited and have a relax party just yet...I will keep posting as the days pass. Please Please Pray for us!

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Good luck,

I emailed you earlier, look forward to hearing back from you. Hope things continue to go well .. talk to you soon.

 

Deanna

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Myrose,

 

When I weaned my son off the risperdal I had to really stop and remember how he still ticced even on the meds. I would panic every time I saw a tic. Just try real hard not to think about it or you may see things that look like tics and really are not. Good luck.

 

CP

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myrose

 

hope it is still going well

 

I know its hard but try not to be too focused on what may be a tic etc as she can also pic up on that and be triggered. I have learned that lesson with my son altho I realize it may be different because he has TS

 

I dont know if you already use the Bach's rescue remedy, but you may want to think about it for YOU :( a few drops under tongue has a very calming effect. We always keep a little bottle of it here.

 

praying the withdrawal remains stable and that your family can have a peaceful fun summer

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Thanks for the tip CSP. My daughter has been tic free so I am sure I will see that FIRST one pop through UGH!!!!

I hope we can better handle it. The little tics like eye twitching and the mild ones never bothered her or I.

Its when the severe headbob and whole body jerk came into play that pretty much helped us all fall apart.

I am okay with the tics until they bother her and then I feel helpless..... I hope they stay mild.

 

Cheri...what stuff are you speaking of? Never heard of it.

I have B-complex on hand, mag and the new "tic Tamer" ready to go.

 

Tonight there was NO MEDICINE at 7:30!!!!!!!!!!! I guess now we will just have to wait and see what happens.

 

I am right now watching her sleep and I have seen her sort of jerk her shoulders....tics back so soon??? or just a dream???

I really do not know about this. And I am getting very scared to say the least.

 

Thanks for all your support and wishes!

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I started my son on a new probiotic and was scared that it may bring on tics. I was watching him sleep last night and saw some jerking- I was scared that he would be ticcing today because of it. Nothing today. They just seem to do a lot of moving and jerking in sleep I guess-good luck.

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Bmom

 

When you say "I guess they" do you mean children with tics have body jerks at night? or just people in general?

 

I thought most (not all or always) tics disappeared when sleeping?

 

What do you think the jerk is about??? she only jerked before when she ticcing constantly.....it never went away even in her sleep.

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Myrose

I know what you mean about watching and noticing everything when you have a change. My son was doing wonderfully on the topamax and I had mentioned earlier the last prescription he got was a generic. We have been using it for a few weeks and I thought everything was fine but within the last week or so I see a bit of a body twitch and now some nose and hmm sounds. I just called my prescription mail order company to find tell them I do not want the generic and would like the real name to find out that what used to be 90.00 for 3 months will now be 129.00 since generic is available. Of course I had to do it to just see if it was coincidental or if it is the medicine. It is just frustrating to know they charge you more because they have a generic and the only reason I don't want it is because it does not do the same. Nothing really changed in his life, like food changes or swimming in the pool yet so I am hoping when we get the real brand back it is back to the way it was for the past 5 months.

 

Also funny thing is when I started this prescription they told me it doesn't matter if he takes one or 10 a day it is the same, now they charge me more for each capsule........ boy I hate insurance companies.

 

Good luck and hope you contnue with success

 

Mary

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Wendy, Mary..

 

Just wanted to tell you I have been reading your posts and try not to worry. You have the Topamax and know that it works and that is a good thing. Like I said before I chose to put Nicholas only on th 15 mg so i could see what his triggers still were. Having him on 15 mg took the "edge" of the tics if they flared up to say the least. In other words they were very manageable. He has been tic free on the topamax and also had his tics ( not severe on it) Just this past 14 days we have gone through a tic cycle again started in his neck and went to his stomach tic. I live in new Jersey and it has rained for 2 weeks. I have always suspected a mold allergy so two nights ago I gave him a teaspoon on benedryl, his stomach tic subsided. Gave it to him again last night and it seems to be gone. So I am looking into mold/mold allergy. I guess what I am trying to say is if you need to lean on the Topamax (maybe at a lesser dose) until you have your daughter all "figured" out it is an option. One that helps me remain calm as I figure out the puzzle......

 

 

abbe

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UPDATE:

 

Still nothing everything is great and her mood is better than ever! We are taking nothing as of this point....not even vitamins. I am holding off on everything so I will not get confused and overwhelmed. Want to find all the triggers.

 

The only thing I have been given her is the claritin tablets (littel purple tablets 2 per day) in the morning after breakfeast.

 

I started this because of the eye rubbing and it has not come back.

 

So......3rd night no Topamax and so far so good.........I wish I knew how long it takes to get out of the system though...

I will add that she had some candy yesterday and a milk shake made with bananas, strawberries and almond milk.

 

I didn't know about the starburst candy (Daddy did it!) but she only had one square and I feel I have to let her enjoy that once in awhile but I stresses to my husband how important this timing is right now. I want to know the first trigger and am also logging everything.

Sometimes I feel I am alone in this....he really just does not get it and it frustrates me to NO END!

 

Does anyone else have a husband who really does not get it???? What do you do in a situation like this to make them understand the importance of it all?

Its not that he does not care...its hard to explain I guess.

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