Does anyone have kid/kids who take at least 3 seizure medications at one time?

Roxie - posted on 09/21/2009 ( 23 moms have responded )

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My son has been having seizures since birth. He started with Trileptal first. In 2008 they added topamax twice a day along with trileptal. The two meds didn't ease the seizures. Now he is taking keppra twice a day along with the trileptal and topamax. He seems to be doing good on all 3 so far.

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Diana - posted on 09/23/2009

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hi, my son is on tegretol 3x daily, and frisium 2x daily, we tried epilim which he is allergic to, and when he was a baby was on phenobarb, but taken of it cause he wasn't learning anything. He is only having infantile spasms at the moment

Kelly - posted on 09/22/2009

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My daughter has infantile spasms & is on Topamax, Epilim & weaning off Phenobarb but will add another 1 as the others arent stoppping the spams but have made a difference in development

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User - posted on 01/10/2014

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My son is 4 and had his 1st seizure at 6 months old. He is actually on the same 3 medications. We started with topamax added keppra and about a month ago added trileptal. He hasn't had a single seizure on all 3!

Cassandra - posted on 07/07/2012

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my son is 2.5 and was diagnosed with tsc, he has infantile spasms and partial siezures. He is on 200 mg zonegran daily, 6ml keppra daily, and 500mg sabril daily, were in the process of weaning off the sabril to see if the spasms have gone away yet. anyhow it has been hard and i hate giving him meds but i hate seeing him have seizures more. its difficult to know which medications would be best for a child i wish i knew what would be best because i hate having him being tested on with all these meds ugh!

Jen - posted on 08/24/2011

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We are back down to two but have been on three at times. She's been on phenobarbitol, topamax, keppra, lamictal and depakote at different times.

McKell - posted on 10/02/2009

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Hi everyone! My daughter is 11 now and has been on so many different meds it is hard to keep track! At the moment she is on Dilantin, Zonisamide, and Ethosuximide. The three seem to be helping somewhat, although she is still having almost daily seizures. She is seeing the neuro next week so I am curious what he will decide to do at this point.

Michelle - posted on 10/02/2009

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My son was diagnosed with infantile spasms with intractable epilepsy at 6months of age. He was put through vigorous testing.. eeg, mri, spinal tabs, blood work, genetic something or other, and god knows what else.. even eye exams and sonograms. he was originally put on two B6 vitamins, folinic acid, Klonopin, and pepcid. Then ACTH was added. When the ACTH was added, his seizures decreased to 120 (on avg.) to 30-50 daily on avg. Topamax was then added and his seizures have decreased to an avg of 8 per day... He is bein weened off the ACTH, the vitamins are no longer, and he is still taking klonopin 3 times daily as well as the pepcid. The dr's want to see his seizures decrease even further and are talking about putting him on Sebril... I dont know which way is up and which way is down or back or forward anymore. He used to be the happiest baby and now he just whines and moans. first I thought it was all the meds, but now that most have stopped I am unsure what to think. I have heard klonopin can cause you to feel like you're drunk or confused, maybe its that... Im not sure. I know I just want my old baby back again and willing to do whatever it takes to get even remotely close to "normal". but yes, 3 meds seems to be the magic number

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my son has had seizures since birth also. he has been on so many drugs. there has been several times that he has been on 3 seizures medications. he was just on 3 a couple of weeks ago. he took topamax for awhile, but it caused jake to not eat and he lost alot of weight. we just stopped the keppra because it was causing behaviour problems. right now he is on depakote and dilantin. we also have diastat when needed and he also VNS therapy.

Gentile - posted on 09/30/2009

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My daughter is taking three seizure meds as well. She started having convulsive seizures at 3 months old and was diagnosed with infantile spasms at 6 months. She takes phenoborbital keppra and sabril. I find that all 3 make her sleep a lot.

Val - posted on 09/27/2009

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hi!

My son is now 6. he is currently on Lamictal 2x day (50mg each dose), Zonegran 2xday (100 mg in AM, 200 md g in PM) and Topomax 2Xday (25 mg each dose).

It's real fub tryinbg to get hime to take all of then... HAHAHA- we end up making a "game" of who can take there meds 1st, Mommy or my son.

Donna - posted on 09/25/2009

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Hi I'm Donna and my son Derrick has been on three different drugs for many years. At present he is on trileptal, zonegran and dilentin. HE also has a VNS, he still has seizures. But we do what we have to for seizures as all moms know.



Donna

Gretchen - posted on 09/25/2009

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My son started having seizures at 1 week old after having meningitis. He has been on 8-9 medications. The most we have given him at a time is 2 though but I would say if it is working then just go with it. I say this as long as you trust your neurologist. You could also research these meds on the internet and it any 2 of them deal with the same type of seizures then you could ask your neurologist if you could begin to taper him off of one. Right now we're doing Keppra and Lamictal. Be careful with the Keppra. It can have a nasty side-effect of aggressiveness often referred to as Keppra Rage.

Brandy - posted on 09/24/2009

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My daughter started has had seizures since she was two. Currently she takes Felbatol, Zonisamide and Depakote, all three of them combined have gotten the seizures almost under control. She is still not exactly where her doctor would like for her to be and since she will turn 12 next month they are lookin into vagus nerve stimulation.

Kathy - posted on 09/23/2009

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My grandson takes more than 3 a day. He is finally going to get that surgery to help with his seizures so mayb e we can get him off of some of the meds.

PATRICIA - posted on 09/22/2009

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did you ever try ACTH? INTRA-MUSCULAR SHOT YOU ADMINISTER. My daughter also had infantile spasms with no underlying diagnosis. She was diagnosed with Lennox Gastaut in Aug. 08

PATRICIA - posted on 09/22/2009

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17 DIFFERENT ANTICONVULSANTS.....CURRENTLY LAMICTAL, TRANXENE, AND BELIEVE IT OR PREDNISONE....HEY IT WORKS...

Katrina - posted on 09/22/2009

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my daughter was on phenabaratal when she was born, then she was taken off of the phenabaratal and was put on zonegram, with that she was on keppra along with the zongram, now she is on keppra and one that i can not spell but it starts with a d. she is doing good, with the med that she is on now.

Colleen - posted on 09/22/2009

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My daughter is on trileptal keppra and pheno. We are weaning her off of keppra slowly so we can add lamitical or zongeran. They want her off pheno to because it interferes with learning. She is pre-k hopefully we can change all this by next sept.

Colleen

Judy - posted on 09/22/2009

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My son has been taking Depakote, Peganone, Prozac, Ativan, Zonegran and now Vimpat all at once 3 times a day for years and he is doing ok but still has multiple seizures per day. Sometimes he get Pancreatitis from the Depakote. He takes large doses of Zinc and Selenium to prevent this from happening. He is older now but through the years he has been on every anti-seizure medication there is so if you have any questions feel free.

Suzie - posted on 09/22/2009

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my son has traumatic brain injury caused seizures. since 10 wks he has bann on trileptal. 2 yrs ago the dr put him on topamax and last christmas he had a few really bad seizures so they upped both levels and added pheno. so far so good. we do all 3 twice a day.

Nicole - posted on 09/21/2009

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my so is on topamax and keppra twice a day plus a muscle relaxer baclofen. his seizures got better when we added the keppra but now they keep getting worse even though we keep upping the kepra.

Samantha - posted on 09/21/2009

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Hi Roxie! Yep! We are on Epilim, Topamax and Frisium twice a day, and have just added steroids to the mix last week. We have tried heaps of different kinds and combinations, our doc said the next step may be a VNS, but she would still have to be on all her meds! She doesnt have seizures everyday like your son Laura, so I really feel for you, but they are quite frequent and she will build up to having 6 or so Tonic/Clonic a day. Pretty tiring, and it makes her lose skills. We dont have a DX yet either, after extensive testing, MRI, EEG, Genetic testing and currently doing a Lysosomal storage disease test. All we can do is soldier on, and do the best we can with what we have been given, for our gorgeous children!
Wish you all the best and hope the meds keep working for you!

Laura - posted on 09/21/2009

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My son takes keppra 3 x's a day...phenobarbital 2x's a day and klonopin 2 x's daily...plus he is on the ketogenic diet and also is give diastat acudial when needed........still has seizures tonic/clonic....gelastic and infantile spasms every day......have tested him for the past 2 years and his drs just 2 weeks ago told me there is no diagnosis for him....:(

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