No meds seem to work let alone help :(

Ashley - posted on 11/10/2010 ( 18 moms have responded )

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Hello.
I am new to circle of moms, and was wondering if anyone else had troubles finding a medication that may have helped their child's seizures. My daughter will be 4 on Sunday (Nov. 14th) and have been dealing with seizures since she was 1 1/2 yr old, she has what they are calling complex seizures ( a mixture of different seizures), and we have tried all sorts of med - even though I am against it, but when it comes to my daughters health and safey, its more important - I guess what I really would like to know if anyone else out there has had the same problem where no meds seem to work.

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Danae - posted on 01/29/2014

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Hi. We are in the same situation. My 1 year-old daughter has a hundred seizures a day and is on several medications, none of them are working. They say 30% of people do not respond to seizure medications. We have recently started on the ketogenic diet. So far it has not reduced her seizures at all. It is heartbreaking. I've been doing some research into other options if you are interested. http://lydiaunicorn.wordpress.com/2014/0...
I hope you find something to help.

Carmen - posted on 12/08/2010

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Hello,
I agree about there not being enough research on this illness: causes or medications - all Still very mysterious and Scary. We have to be VERY careful when choosing doctors- go with your gut feelings and the fact that you KNOW your child. My son was diagnose with Absent Seizures at age 8. He doesn't fall, but blinks his eyes for seconds, not realizing it had happened. They said it usually pass' with age. He is now 20, still gets them if he miss' doses, but is on less medication than when in his teens (still the same brand at least). We are currently seeing a new Neurologist. Medication is also worrisome since its not really known what works and can have causes. Good luck at the Mayo Clinic, Happy Holidays to all!

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i have a grandaughter, just turned three years old.we noticed he having eye and lid twitching about a year ago and thought it was just one of her facial expressions.then we noticed they were becoming more frequent and were involuntary.then if sitting would fall forward,if sitting,fall, drop to the floor, if standing or walking.the only answer we have at this point is that she's having seizures.we have yet to find out what kind.like your child she has been on three and four medications at a time which did nothing but dope her up and cause different reactions to them.meanwhile the seizures go on as usual.she now has learning disabilities and has regressed to a twelve month old level.we now have appt in minnesota,mayo clinic dec 27th.hopefully they can give us some answers and results.good luck with your daughter.it sounds a lot like our case.i think there needs to be a lot more research done on this illness.i never dreamed there was so many people afflicted .alli's learning abilities have been affected and she has regressed to a twelve month age level.

Louise - posted on 12/07/2010

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hi
My son is 14 next week he's seizures started just before he's 9th birthday he has daily seizures and at there worst he was having anythng from 30 seizures a day they tried to operated but found it would make him lose motor function on he's right side so was ruled out he has had vns for a year and a half and this has help a bit but no where near where they had hoped it would
in the summer he started going into status again and was taken into hospital while there and on a drip he was taken off two lots of he's meds and a new drug was introduced which was lacostimide its the best he has been in five years off so many combinations of drugs now he is on a combination of epilim clobazam and lacostimide a good day he will have one seizure and a bad day about 3 so he is now living life again rather than exsisting so no matter how bad things get i know ive been there there is always hope they are always working on getting new meds out on the market hope things get better :)

Heather - posted on 12/02/2010

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Ashley, I really feel for you. My daughter has complex partial siezures too and it's been so hard to find the right mix of meds!! Currently she's taking Tegretol Oral, Topamax .The Tegretol Oral is just awful, it really interferes with her ability to function and we're slowly weaning her off it and increasing the topmax It's working - she has FAR less siezures and she's coming back to us :) although like all meds I've heard that it doesn't agree with everybody.i have siezure disorder also, and like my daughter she first got it at 18 months,she's been in& out of the hospital since,i hope you find the right meds for your daughter. My thoughts are with you - good luck!!

Kristen - posted on 11/28/2010

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My son at age 2 was diagnosed with benign rolandic epilepsy with centrotemporal spikes. He has grand mals at night and absence seizures during the day. I was completly against meds so his neurologist put him on a vitiman regiment of 50mg of B6 and 50mg of magnesium and a modified diet as well. The modified diet is called the Feingold diet. It cuts out all food dye using only whole, natural foods. This helped him greatly. At age 8 now he still has seizures at night sometimes, however if I make sure he gets lots of sleep, they are greatly reduced. I can definately tell when he has had something with food dyes in it, because it increases his seizures significantly. Hopefully that helps you.

Teresa - posted on 11/26/2010

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My daughter was in the study at Johns Hopkins for the use of the Atkins Diet. It worked wonderfully for a few months and then she ate something she wasn't suppose to and back came the seiures. Either diet takes an extreme commitment by the entire family.

Julie - posted on 11/26/2010

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Has anyone suggested the Ketogenic Diet or the Atkins for Seizures diet? These diets are often suggested by neurologists when medications don't seem to work. The children are monitored by hospitals if on the diet because there are side-effects. Some children stop all seizures on the diet, others reduce their seizures (number of and severity) and some get no benefit at all. I have been led to believe that most get some benefit.



My daughter has suffered from multiple daily seizures for over 2 1/2 years now (and she is not yet 4), no drugs seem to work and surgery is not an option. The diet was suggested as an alternative and has improved her quality of life immensly.



The diet may not fit into your lifestyle but it is worth checking out! My understanding is that the Keto diet (the stricter of the two) was used as a means of seizure control before pills and potions were readily available.

Ashley - posted on 11/25/2010

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She is currently only on Zefron, As she has allergies to the rest, and has bad reactions like behavioral mood swings.

Jolene - posted on 11/23/2010

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im 18 and was dionogised with epilepsy at 6 weeks of age. no medicine worked for me. they either made me have worse and more seiures or they made me depressed and suicidial. i am now the happiest and healthiest iv ever been with out them, yes i may not be able to drive a car or go to a club with flashing lights or do anything unsupervised and have to rely on everyone else but im lucky, my daughter is not an epileptic and i couldnt of asked for anything more. ur daughter will be fine as long as u r there for her and when she thinks ur just being over protective - one day she will realise u were just looking out for her

Teresa - posted on 11/20/2010

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My daughter has had seizures for at least 14 years she is 19 now. She has been on just about every med out there and has been in studies for two new ones. She has a vagus nerve stimulator which has helped, since she was 8. She currently takes lamictal as her base drug and Banzel which is relatively new ( she was in the study for it). This combination vns, lamictal and banzel has been the best so far. She is down to 1-2complex partials that generalize a month. We thought that we would never see this day so keep looking and hopefully the right combination is out there for your child.

Trudy - posted on 11/19/2010

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yes i do.I don't have kids with epilepsy but i do since i was 11 yrs old and now i am 38 yrs old. I have been on so many it is ridiculous so u are not alone. My doc wants to put me into hospital to try something else like change my meds that i am on so maybe you could try the same with your daughter. Trudy.

Teresa - posted on 11/18/2010

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Yes My son has been on every med available for seizures and none of them have been able to completely take the seizures away. I am wrong Lamictal took it away but then he had a allergic reaction to the meds. My son is 19 now and has had 3 to 4 seizures a week since he was 3 months old and sometimes more. When he was little he would have the ones that lasted 1 to 2 hours long and he would have to be inabated. Now he has grandmalls that last 45 secs to a min and let me tell you that was a long min. It is so hard to see our loved one going through this it never gets easier all we can do is pray that there will be another med made that will work. I pray all works out for you and your family

SOBER - posted on 11/17/2010

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This is the first time posting to this site and I find it difficult to post not being able to see my whole reply so, pardon if my reply sounds choppy.



My child was diagnosed with complex partial seizures about 1 1/2 yrs ago. The dr. believes he has probably had them since birth. He was speech & lang. delayed that we thought was due to autism (although not one Dr. diagnosed him as AU, it was just a motherly instinct) and have since found out he is not AU but show symptoms of AU, ADD, OCD, and whatever LD's you can come up with b/c of where the seizures are located. He was at the EMU for 9 days to see if he was a candidate for surgery but unfortunately, he never seized just showed a lot of seizure activity that generalized. Anyways, to make a long story short, for the past 1 1/2 years my son has been on Lamictal, Trileptal, Tegretol, Keppra, and Depakote. All of which had horrible side effects that made him crazy and some that caused seizures we had never seen before. The Neurologist, who is internationally well known in the epilepsy realm, has decided to stop his medications and clean out his system. My son has now been off for 3 weeks and I am happy to say that my happy go lucky child is back. The medication had him in a dark place that seemed like he was never going to come back from.



The neuro. said there are some types of seizures that medication will never work for and why continue to make people take it with all the bad side effects if it's not outweighing their quality of life. This is not to say that the Dr. is sitting idle, he is just cleaning out my child's system. In about 3 weeks we will start a new game plan and believe me when I say I am tempted to not allow another try of medication.



My son has never had a drop seizure, as a matter of fact the only seizures I have seen is the starring spells and sometimes he'll walk around dazed and confused. The Dr. doesn't believe his seizure will ever go away, but at the same time he doesn't believe you should keep medicating a child if none are working. Most Epileptologist know that after trying a certain amount of medications and combinations without success that more than likely none are going to work. Complex partial seizures are one of the hardest seizures to control and have the largest percentage of intraceable type which is why most medication can't control it. However, if they can pinpoint the location they have the highest operable rate of success especially if they are in the temporal lobe



Good luck to everyone and I pray that one day there will be a cure.

Jennifer - posted on 11/17/2010

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Oh I've heard some really good things about cranial osteopathy and also the vitamenB supplements.

Jennifer - posted on 11/17/2010

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Ashley, I really feel for you. My daughter has complex partial siezures too and it's been so hard to find the right mix of meds!! Currently she's taking Lamictal, Topamax and Keppra. The Topamax is just awful, it really interferes with her ability to function and we're slowly weaning her off it and increasing the Keppra. It's working - she has FAR less siezures and she's coming back to us :-) The Lamictal really helps too although like all meds I've heard that it doesn't agree with everybody. My thoughts are with you - good luck!!

Stephanie - posted on 11/17/2010

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We have a pretty similar problem - my sons seizures started at 19 months very aggressively and all of the sudden, and he turns 4 this month. We are on 4 meds and on average have one big seizure a day (complex partial, but they knock him unconscious an dunbreathing for 2 minutes). We have tried the ketogenic diet and surgery, neither was the right answer for us, so we continue to try new meds and we are exploring some alternative treatments like neurofeedback and cranial sacral therapy to supplement this...

Karly - posted on 11/10/2010

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Hi Ashley! Yes I (we) are in the same boat. My daughter was also diagnosed with complex seizures, she has every kind out there. She was diagnosed when she was 3 and is now 8 years old. We have tried all meds out there and none have helped. I actually found that more commonly than not they would cause them. One kind she did have was head drops, where her head would come slamming down HARD and FAST on anything around. We started her on B6 to help with behavior and the next day those "drops" STOPPED!!! She went from 60+ a day to none. So please look into taking a high dose of B6. My daughter at 8 takes 100 mg am and pm. But u need to check with the dr. Just beg them to give it a whirl! Unfortunetly this B6 did not stop all seizures by anymeans, but her behavior and congnition was amazingly better. What meds are your daughter curently taking?

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