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Emily67

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Reply with quote  #1 
Hello fellow CVS parents or patients, have any of you been prescribed the above anti-seizure meds (topiramate) to help prevent or lessen the intensity of episodes? My daughter is 17 and we just recently saw a neurologist (off the CVSA referral list) in Tampa. He prescribed this to her but she hasn't started them yet. I'm afraid to have her start taking a maintenance medication without doing thorough research on it. Anyone have any advice or experience with it?
Thanks, Emily
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ginny

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Reply with quote  #2 

One of my kids had a lot of success with Topamax.  She does not have CVS but did have extremely frequent severe migraines.  She tried Topamax several times and finally tried starting on a lower than suggested dose due to side effects.  Going up slowly on the medication allowed her to get to a therapeutic dose.

She did have word finding side effects but the medication worked so well for her that she remained on it.


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Eric

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Reply with quote  #3 
Our son was on it and it helped with migraines and CVS episodes but the brain fog got so bad that we had to stop using it.
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wynnak

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Reply with quote  #4 
Trokendi is another version of Topamax. Which is a medication that is used for helping to treat CVS especially when there is a migraine component. My main suggestion would be to make sure they are starting a low dosage and titrate up. If there are side effects that happen.. They suggest  6 months to adjust to them. 

Let us know how it goes.

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Blynda
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Emily67

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Reply with quote  #5 
Thanks everyone for your feedback! I guess we will just have to give it a try and see what happens. Brain Fog would not be good because she is about to start her Senior year in high school and has already struggled this past school year due to this illness.
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ginny

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Reply with quote  #6 

Do you have a 504 plan in effect?  That should be a help while she gets used to the medication.  It only took us a couple of weeks to put the 504 plan together and we did not do this until May of senior year.  We did not know about this plan, and I had been asking about anything other than an IEP (we did not fit an IEP parameter).  

I am going back a long time with our experience but I wish we had known about the 504 and implemented it many years earlier.



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ginny CVSA Moderator
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Emily67

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Reply with quote  #7 
Thanks Ginnie, what is the 504 plan??
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wynnak

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Reply with quote  #8 
504 are a must. It’s for people that need accommodations to be successful in school. That they have their life impacted by things like chronic illnesses or disabilities.
If you look around in here, I believe that I posted what we requested for my son and fine tuned for sophomore through senior year.

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Blynda
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Emily67

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Reply with quote  #9 
Ok, I'll take a look on here for the posts. Thanks!!
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