Topamax???

[D L and K's Mom]

I am probably spelling it wrong/ They have switched DS from 1600 mg of Tegratol XR (which was not working...huge breakthrough seizures etc) he is now in the hospital undergoing a long term video EEG. They are now starting him on 25 mg of Topamax...for one week then they will slowly increase it. I am a bit concerned. I fell like I am setting him up for more seizures in the next few weeks while they slowly incresae his meds? I have not talked to the Dr as of yet as DH is staying the weekend in the hospital with DS I am going back this evening and we will switch. Anyone on Topamx?? Anyone have any great things to say?? Horrible things to say??? Doesnt 25 mg sound very very small. DS is 130 lbs and 5 foot 6. Thanks.

 

[JenJen]

I am on Topamax and LOVE it!!!! They took my off it for a while because I lost a lot of vision in my right eye but they now think it is something Auto immune that is causing the fluctuation in my vision not the Medication. I took Tegritol before topamax along with several other Anti Siezure meds. in the past On Tegrotal I went from 97 pounds to 197 pounds in less then a year. When they put me on topamax I lost a lot of wieght I am now 145. It makes certain foods like soda and citrus tasting foods taste really bad so it caused a lot of wieght loss and I am not complaining LOL.
The only thing I can give you advise on is that you need to make sure your DS stays cool. If you are a frequant visitor of the parks I highly reccomend gettng the GAC for staying out of the sun. I over heat and pass out. Also make sure he drinks lots of water because you are more likely to develope kidney stones while on this medication. It has never happened to me but I have heard from others that did not drink a lot of fluids this happening.
If there is any changes in vision go to the eye doctor and have them check his eye preasure.

I am giving you all the warning stuff but it has been a miracal medication for me. Not only do I have complete control of my siezures I have less pain (Fibromyalgia) and No more headaches. That was just icing on the cake to have those other benifits!
Best of luck and I hope it helps him!
Jen

 

[D L and K's Mom]

My main concern is DS is at the level of a 18 month old. He can't speak or communicate and I am very worried about the side effects as he can't tell me. The reason they used Tegratol was there are really no big side effects (That is what I am told) I figure the seizures are so big and so severe the side effects are less of a problem then the seizures themselves. Thanks for the info. I am off to the hospital again.........

 

[SueM in MN]

How many mgs of a drug is a dose depends on the drug; the mg is just how they measure it and some drugs are heavier than others. Some have a small dose, like Valium - an old drug used for seizures, has a normal total dosage of between 4 and 40mg a day, while Tegretol XR has a larger total dose (the smallest pill of Tegretol XR is 100mg; the smallest Valium pill is 2mg and the smallest Tompamax pill is 200 mg).

The 25 mg dose sounds right to start (the drug company insert says a starting dose is 25-50 mg a day). Considering that (I think) he's still on some Tegretal, they might be starting slower, or I wasn't clear if he was getting more than one 25mg dose a day.
The usualn total dose of Topamax per day is only listed as 200 mg twice a day (total of 400 mg per day).
Here's a good consumer info page about Topamax.

 

[SueM in MN]

Here's another good website:
http://www.efa.org/answerplace/Medical/treatment/medications/typesmedicine/

 

[BeccaGrace]

My dd-3 has been on Topamax for a year. This was her first anti-seizure med, so I can't comment on the transition. My dh is on Tegretol though, so I can see some comparison in the differences and I can sympathize with how scary switching seizure meds is since we've gone through it with him.

Becca is on 60mg a day (she is 26 pounds) but built up to that over a period of 3 months...we started at 15mg and went up by additional 15mg until we reached the full dosage. It's less of a shock to their system that way and good for seeing side effects progressively.

The pros we've seen:
--no seizures in 10 months (the obvious biggie)
--doesn't make her tired (which 1600 mg of Tegretol definitely does to dh)
--she is happy and well adjusted on it

The concerns...
--NO SWEATING...this is very common on Topamax and very hard with those that can't communicate their needs. We spent the entire summer indoors because even 70s in the shade causes her to overheat...she also overheats when she gets upset. You have to pay very close attention to any signs of heat issues.
--Learning/Speech delays...not sure how much of this is directly related to the Topamax but I know that it does cause problems recalling words/information. People describe it as being like when a word is on the tip of your tongue but you just can't think of it. We don't know how much is meds or if it was her last really bad seizure or something else but she hasn't been able to retain any new information since last year. She was classified as preschool disabled and is talking more now but still not making progress in the other retention issues.
--Other possible side effect/issues to watch for...Topamax can cause kidney stones and require that you stay extra hydrated (doubly true with the no sweating!)...we haven't experienced this but it is something to keep in mind.
--As JenJen mentioned...it can change taste and cause weight loss because of a reduced interest in eating. I was told that as long as Becca didn't lose more than 10% of her body weight not to be concerned.

Those are the major side effects I can think of off-hand or that we've experienced. Even with them, we love that Topamax has given us a little security against Becca having seizures. All of the meds have different side effects that could make or break the deal depending on how they affect your own child...it's such a hard process--I'm sorry you are going through such a rough time and hope that the Topamax helps control your son's seizures

 

[JenJen]

Topamax but I know that it does cause problems recalling words/information. People describe it as being like when a word is on the tip of your tongue but you just can't think of it.
That is called aphasia. That is when you look at a item and you know what it is but forget the word to describe it. That was the medical term for it now here is my laymens term. Topamax = Dopamax. It does make you kind of dinggy and I tend to forget what I am saying in the middle of a scentance.

 

[ducklite]

My son takes it as a mood stabalizer. He doesn't like taking it at night, which is when they normally suggest using it. He takes it in the day, and has no problems with side effects. His doctor says he can take it whenever he wants to, morning or night, as long as he is consistent.

Anne