6yr old son on keppra and just added topamax what do i do!?

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camsmom28

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hello everyone,

I'm going to get right into it I have a 6yr old who was diagnosed with focal seizures at the age of 2yrs. since then he has tried three different meds tegratol, topamax, and finally keppra. Both the tegratol and the topamax made the sittuation worse than it was. With tegratol i was unsure he was 2yrs and wouldn't stop seizing, with the topamax same thing and now the keppra. He is doing great rarely has seizures while on it but if the dose is missed just one i can be expecting a seizure to come within the next 24hrs or so. Overall it works better than the others, just recently while in the mix of switching nuerologist the new dr. requested to add another because he was on a high dose of the keppra. Can this be true 100mg liquid form 12ml twice daily and doing great no aggressive behavior but a little bit distracted at school but nothing major he was doing fine. Now the dr. wants to add topamax so i agreed to try it out the entire week he seem as if he was in zombie land and couldn't complete his sentences, his eyes were extra glossy as if he had just got really high. Just so happen he had an eeg appointment, on the way he went into a 40min seizure and i was directed to take him to the hospital. In which his doctor up the dose of topamax, something that i didn't feel to comfortable with, he didn't have a seizure for 3 months prior to adding the topamax. I came home after being at the hospital and decided to take him off the topamax and just give him the keppra it's been a full day now and already i see changes in his behavior for the better on the keppra alone.

my questions are is it ok for me to take him off the topamax after being on it for a week without being winged off by a doctor, and is there a such thing as him being on a too high of a dose of keppra and it no longer being affective in which added another med would be best eventhough he hasn't had any seizures in 3 months? don't know what to do or what's best and it seems as if the drs are just medicating my son uppppp to thhe maxx help!!!!
 
Camsmom,

Welcome to the forum!

I think medication issues is one of the hottest topics in here. It seems that everyone is different, and reacts to the medications differently. They also react differently when they are ramped up onto, or taken off of their medication.

I'm not a doctor, so I can't really advise you on how/when to administer your son his medication. But I can tell you how I react to being taken off a medication. Even if I've only been on it a week I need to be weaned off. My body is super sensitive to medication changes. I have to be ramped up on a drug VERY slowly, and ramped down VERY slowly. If I don't my body reacts with seizures, headaches, rashes (when ramping up), a funny feeling like I'm on speed (when ramping down).

Other people can just suddenly change their meds, no problem. On. Off. Easy.

As for your son, how does he feel just going off the Topamax? You have already taken him off, right? The half life for Topamax is long - 21 hours. That means it can take four to five days or so for him to be more or less Topamax-free.

Okay. Get ready for a LOT of quotes.

Epilepsy.com - Topamax

Epilepsy.com - Children and Topamax

Epilepsy.com - Dosing Guidelines
How long has he been off the Topamax? If he's been off for a couple of days and seizures aren't increased and his body is okay, IMHO there's no problem.

Also IMHO, it's not a good idea to stop a med without the doctor's help. I've monkeyed with my doses, so I'm a huge hypocrite on this. But with a child it's harder to tell what you need to do. A doc's perspective is helpful.

About dosing. This is what the package insert says for the liquid form, which can be injected or used as a liquid oral dose (according to the package insert):

http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=8967

5.2 Withdrawal Seizures
Antiepileptic drugs, including KEPPRA, should be withdrawn gradually to minimize the potential of increased seizure frequency...
8.4 Pediatric Use
Safety and effectiveness of KEPPRA injection in patients below the age of 16 years have not been established.

Signs, Symptoms and Laboratory Findings of Acute Overdosage in Humans

The highest known dose of oral KEPPRA received in the clinical development program was 6000 mg/day. Other than drowsiness, there were no adverse reactions in the few known cases of overdose in clinical trials. Cases of somnolence, agitation, aggression, depressed level of consciousness, respiratory depression and coma were observed with KEPPRA overdoses in postmarketing use.

Pediatric Patients Ages 6 To < 16 Years
Treatment should be initiated with a daily dose of 20 mg/kg in 2 divided doses (10 mg/kg BID). The daily dose should be increased every 2 weeks by increments of 20 mg/kg to the recommended daily dose of 60 mg/kg (30 mg/kg BID). The effectiveness of doses lower than 60 mg/kg/day has not been adequately studied. Patients with body weight ≤ 20 kg should be dosed with oral solution. Patients with body weight above 20 kg can be dosed with either tablets or oral solution. See Table 14 for tablet dosing based on weight during titration to 60 mg/kg/day. Only whole tablets should be administered.

It doesn't say anything about overdoses in children.

This is from RXlist.com
The following calculation should be used to determine the appropriate daily dose of oral solution for pediatric patients based on a daily dose of 20 mg/kg/day, 40 mg/kg/day or 60 mg/kg/day:

Total daily dose (mL/day) = (Daily dose (mg/kg/day) x patient weight (kg) ) /
100 mg/mL

The dosing info at epocrates.com is for adjunct use of Keppra (when he's taking a second drug). It doesn't say anything about monotherapy (use of Keppra alone).

I don't know about a max dose of keppra and then it is no longer effective. I'd be worried more about an overly high dose being toxic and harming your son. There is data on overdoses for adults, but no info that I could find on the pediatric effect of very high doses over a long period of time.

Not having official recommendations for pediatric monotherapy makes it hard - you really DO need a doctor. All the overdose info is for adults. So you DO need to ask your doctor.

I think the real issue is finding a doctor that you feel comfortable with and who gets to know your son and how he reacts to drugs. My neurologists know now exactly how to dose my drugs in a way that's best for me. Because of your son's reactions to drugs, you may want to take him to an epi (seizure specialist). The best place to find one is a regional epilepsy center. You can look for one near you here:
http://www.naec-epilepsy.org/find.htm


I think you are a smart mom. You know your son best, and you are doing the right things for him. Having a good doctor would help ensure the right things are done in the right way.
 
Hi camsmom28, welcome to CWE!

I just wanted to echo what Endless said above, and let you know that there are definitely times when you may have a better sense of your son's reactions to meds than the the doctor does. I've also tapered down my dosage (successfully) without informing my doc, so like Endless I am not always "compliant." Even so, it's ultimately best to keep your doctor in the loop, and/or find one that will listen to your concerns and insights. It's even better if that doctor can be reached quickly!

I wish you good luck with your son, and hope his med situation will improve.

Best,
Nakamova
 
thanxs very informative

Thanx Endless very informative and thanx for the quotes as well. My son has been off the topamax for 2 days and he says he feels a lot better. I notice the difference as well, he's been with his new neurologist for only a month now so im going to give him a little of time so that we can feel each other out.

Thanx Nava i need some inspiration sometimes i feel like im so lost in the whole thing, but Endless open my eyes to a lot about the keppra its working well with him and im going to let the doctor know that and if the seizure start coming more frequently while on the keppra alone than we can discuss other methods, other wise i don't want to add anything else not yet hopefully not never.
 
You probably don't have to worry camsmom28, I've Nava seen Nakamova get stressed ova something like that. lol
 
No worries! Just don't call me late for dinner.
 
As a Mom of a teen with intractable epilepsy, I have seen my dearest daughter go through more than her share of new meds.

It is never easy for her. Although she never complains.

Me or my hubby are the ones who chew the ear off our wonderful nurse practioner at the epilepsy center where our dearest is treated. They take notes on every issue we bring up and a plan is put together to improve things.

If things do not improve, guess what, we call again and again and again.

Please call your neurologist and tell them about the changes that you made in med dosing. They do need to know. Never hesitate to call the office with your questions - they are important and you need to have answers.

Take Care:e:
 
thanx

thanx blondie im always worried if im the bad guy when i make changes to the meds eventhough i know my son and i am his mother. I was going to let him know at the next appointment but i think ill just give him a call first thing monday.

thanx again
 
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