Has anyone used the Medication Keppra!

Elise - posted on 03/31/2013

Yes I used it for grandmaul seizures it worked but I gained a lot of weight and my hair and nails became thin and weak over all it worked well

Celine Danielle - posted on 01/14/2013

We did go ahead and up the doage to 2 ml and started her on Topiramate. She is doing really really well. No seizures since Christmas 2012. She goes to see the nuerologist tomorrow. And they did already check her levels. They were 6.6 in december, but the dr. says we'll check again after three months.

Sandy - posted on 01/11/2013

Chala ... the Lecithin is in addition to the seizure drugs, not to replace them. I just experimented with Joey when I ran out of Lecithin. He went 3 weeks without it. He started having a few eye deviating seizures every few days. Now he's back on it and all is well again. Trial and error is the only way we have to find out what does and does not work for our kids ... or even us. I learned my lesson. Even with his large doses of 2 seizure drugs ... the Lecithin is what keeps the seizures at bay!! I had to see it to believe it. Good luck.
Sandy Lora

Chala - posted on 01/11/2013

Sandy Lora, thanks for getting back to me. I may check it out when I am out. His meds are controlling his seizures and that works for us. The doctor & I tried to take him off of his Depakote and Lamictal! It didn't work. He was worse off without them. As long we monitor him, he is fine and can live a half way normal life. Thanks again for the info!

Ashley Renee - posted on 01/10/2013

Be careful on raising dose! They do NOT know the toxic level of Keppra! It is a medicine that does not show up in blood test so they can not see how much is in your system, thus they do not know how much is an overdose! My son is on it, also 3, and also no luck in working. Instead of upping the dosage, I am just going to ask about switching to something different.

Leigh - posted on 01/06/2013

Hi I'm new to this site,my son is 10 he is having violant jerking that has progressively got worse,he was in hospital and they gave. Him midazelam which is what they give tonic clonics fits they never stopped he was conscious when they happened but lasted for 4pm until 3 am in morning as soon as he open ended his eyes they started again ,Dr has given him keppra we are on 3ml morning and night increasing to 6ml also giving him 9mg of melatonin.im really worried as dr's are now saying its not Epilepsey because of video footage iv got and that 3 Eeg normal when he was doing lage violant movemnt whilst aving EEG it was still normal ???????????they are doing tests blood etc

Sandy - posted on 12/14/2012

Andrea ... my son has seizures but is now doing really well on 2 seizure drugs (Trileptal and Vimpat). About 3 years ago I added 1 1200 mg capsule of Lecithin and it made his life so much more enjoyable for us. Puberty threw a monkey wrench in it 2 years ago but he is now Just having 1 eye deviating seizure every couple of months. Incredible how he went from 5 minute eye deviating, arms and legs rocking seizures to ZERO within a few weeks of starting the Lecithin. Buy it at CVS or Rite Aid in the supplements. They usually have it on sale for buy 1 get 1 free. Give it a try. I swear by it.
Sandy Lora

Sandy - posted on 12/14/2012

Virginia ... Dilantin is usually used temporally after brain surgery. My son was toxic on it a couple of times when he was 1 year old. It was horrible!! I feel for you!! You need to see if they'd switch the Dilantin to something else. Lots of choices out there to try!! Trileptal is a very good drug and has been my sons primary drug for over 13 years!! You should also go to CVS or Rite Aid and buy some Lecithin 1200 mg capsules. It's over the counter in the supplements and is for brain and nerve function. My sons been on it for about 3 years and it has helped him tremendously!!! He was seizure free for over 7 months after being on Lecithin for only a few weeks. Puberty set in and things went haywire for awhile but never as bad as before starting him on it. He went from his eyes deviating with arms and legs rocking to 1 eye deviating seizure every couple of months!!! I swear by Lecithin!!! Please get some ASAP!! It could really be a miracle for you, like it has been for my son!! He is still on 2 seizure drugs also. Trileptal and Vimpat. Get on the Lecithin and see what happens and please post on here so we know how you are doing!! Prayers for decreased or completely stopped seizures!!
Sandy Lora

Sandy - posted on 12/14/2012

Chala ... Lecithin 1200 mg capsules (probably have other forms too) is a great supplement. I was in Rite Aid or CVS and was looking at the supplements when it caught my eye. Lecithin for brain and nerve function. My son had nothing to lose by trying it so I decided to go for it. The doctors said that it was NOT going to help. Within a few weeks of giving my son (11 years old at the time) 1 1200 mg capsule a day ... I noticed he was NOT having ANY seizures!!! He was seizure free for over 7 months. Puberty hit and things went haywire. He's 14 now and I still give him 1 1200 mg capsule a day and he may have one seizure in a couple months. These seizures are mostly just the eye deviations which is great compared to the arms, legs, eyes and body all going at the same time for 5 minutes. I believe in Lecithin!! I would not recommend anything that I have not tried and seen incredibly great results from!!! The only thing you have to lose is seizures!!! The cost is not bad. I buy them at CVS or Rite Aid when they have buy 1 get 1 free. Gotta save money anyway I can. Now, get to the store. : )
Sandy Lora

Virginia - posted on 12/14/2012

Thanks so much Sandy.They took me off the Keppra and put me back on Depakote & Dilantin and I am still having seizures. Then they increased my Dilantin to 5 100mg a day and I wound up having to go to the er and they had oded me on the dilantin.So I changed doctors and the next doctor uped my dilantin to 5 again.I told the new doctor what had happened b4 when the other doctor had uped my meds.But she said or no you need 5 a day and in about 4 days I started feeling exactly like I did when i had oded the first time so I just cut myself back.I am still having seizures but not as bad as they were!

Chala - posted on 12/14/2012

Hi Sandy! Could you explain to me what Lecithin, over the counter supplement for brain and nerve function is about a little more. Where can I find it and what is the cost?

Lisa - posted on 12/14/2012

WOW - 3-4 hour seizure, I can't even imagine. I thought 20-30 minutes was bad!! I'm so glad the medicine has controlled them now. Is she doing OK, behavior wise, on 2 medicines?

Andrea - posted on 12/14/2012

My daughter had similar issues. She's now almost 5yrs old(will be 5 April 1st), but was put on Keppra around 7 months of age and continued to have seizures (grand-mal's that last anywhere from 3-4 hrs, although when she hits the 4hr. mark the E.R. finally just intubates and paralyzes her to make it stop - very scary) She was having seizures "round about" every month - month and a half until she hit the age of 2-ish. Then after a very terrifying seizure her Neurologist added Phenobarbitol to the Keppra and that seemed to slow down the amount of seziures she was having (only experiencing them every 8 months or so?) but she was still experiencing very severe ones. Then they upped the amt. of Keppra & Phenobarb. (she's around 30 lbs and takes 6 ml. of Keppra 2x/day & 10ml. Phenobarb. 2x/day) and the seizures have finally STOPPED. She only seems to have an issue now if she runs a fever, but no more "out of the blue" seizures.
Hope this helps you :)

Sandy - posted on 12/13/2012

Celine ... you should get her off of the Keppra now. See if they will put her on Trileptal. My son has been on Trileptal as his primary seizure drug for over 13 years and it has been 'kind' to him and us. The Keppra may stop seizures but the behavior is not worth the trade off. Too many other drugs out their to try. Also, you should give her Lecithin, over the counter supplement for brain and nerve function. It has been incredible for my son. He is able to take capsules but they should have other forms of it to give you daughter. Good luck.
Sandy Lora

Celine Danielle - posted on 12/13/2012

My 3 year old was just put on Keppra less than two weeks ago and has had one seizure on it, but they raised the dosage and she hasnt had another seizure so far. However, they could still have seizures on Keppra it just keeps them from convulsing. My daughter had very dramatic eyes rolling toes pointing, foaming of the mouth, convulsing seizures the one she had saturday was light w none of that. But, she has had very obvious behavioral changes making her behave as if shes going thru terrible twos again. shes also bitting, hitting, punching, anxious, throws tantrums, and not obedient anymore. Luckily the dr. we have is changing the meds but she has to b whened off Keppra slowly so she is stil taking it w the medicine. I withdrew her from PPCD because this is new or us and luckily NISD in SA, TX does free homeschooling. Her speech is getting better tho. I hope at some point this gets easier or less frightening because I am a nervous wreck when she has her seizures and I cr"y just thinking about her having another episode. Thank God for church, Id really b in trouble if I didnt have my Faith or belief in the Lord, healer, miracle worker,my strength. My advice about what the dr. is doing, because its not working, its getting worse,,,seek a second opinion!!! See a different dr. if ur not comfertable with his deisions. We have to do what we feel in our hearts is best for OUR children not everything they say/do is gona b the right choice. The pharmacist told me today,"its like their experimenting w ur child, although their educated guesses everyones chemistry is different, they have to see what works for HER." I hope this helps :))

Na - posted on 12/12/2012

My mother had been on Keppra for going ten years now for her epilepsy and she's had no side effects with it ...

Denice - posted on 12/11/2012

THanks Victoia, that was very helpful. I also have heard of taking Lecithan as well. I am going to try and see what happens.

Victoria - posted on 12/11/2012

1x1500mg capsule/day when he woke up. we added it to his morning ritual of eating breakfast and brushing his teeth.



after going through the initial research when he was diagnosed with petite mal seizures and prescribed Kepra, we were horrified at the side effects and surprised and excited about the experience others were having utilizing dietary supplements to treat their "diseases". there was forum after forum of parents and seizure sufferers championing fish oil. after discussing this with our neurologist, who didn't deny the anecdotal evidence, we made the decision as a family to forego Kepra in favor of fish oil for "one month" to see what would happen.



these days, we look to our diet as the first line of defense, and see food as medicine. now that our boy is a teenager with pimples, we just recently added zinc and colloidal silver (and a few "new" daily habits like changing pillow cases and whatnot, haha) to the morning ritual, and he is (still) seizure-free with a clearer complexion.



can't say whether or not these dietary adjustments would work for everybody, but I can testify that they have worked for us, and that they have no frightening side effects to speak of.

Denice - posted on 12/11/2012

Hi Victoria,



How much fish oil did you give??



Thanks,

denice

Victoria - posted on 12/11/2012

I have posted twice in this thread already, but I want to reiterate that fish oil drastically decreased my son's seizures after one day!! within a week, we didn't see any, and haven't seen any since- three years later. it will not hurt you/r child to try, so please add it you/r child's daily diet and enjoy all the health benefits that fish oil provides, and (hopefully!!) a decrease in seizures.

Denice - posted on 12/11/2012

Hi Kaydee,

My daughter was on Keppra. She is 9 and was diagnosed this past July. She was up to 2500mg time release everyday. I must say, her personality changed. She was angry and not a happy kid. Very very short fuse!! fought alot with her brothers and her parents.



She did have breakthrough seizures, and finally her neuro took her off and started her on Topamax. Some doctors love Keppra because it is nontoxic and I totally get that. However, Keppra did not work with my daughter. I know this is soooo hard. It's harder still when there is no cause. I cry alot. At some point they will switch her meds if she keeps having seizures on the Keppra.



I don't like using generic at all. If we use brand names, it is a little bit more money, but I feel when it is something as serious as seizures, I prefer knowing I am getting the same drug every month. I don't trust generic at all.



Please keep me posted on your daughter. I know this is so hard.

Freda - posted on 12/10/2012

my son Logan was on Keppra and we had to take him off of it cause his seizures got worse & so did his aggression. The minute I told this to our neurologist he had us take him off of it saying it was the drug causing it. If she has gotten worse I would highly recommend that you talk to your dr & have her taken off it.

Leah - posted on 12/09/2012

What kind of seizures? I am not a Dr but I know Drs are always trying to push new meds because they get paid to by the Pharmaceutical companies to do so, but sometimes I wonder why when the old ones work just as well and I dont like/nor will I allow my child to take something thats new to the market.... My son is on Lamictol for West Syndrome type Seizures AKA Infantile Spasms. Hes beem on Lamictol for 6 years and it worked wonders compared to Topimax and Phen. Maybe you should see a dif Dr? Obviously it's not working and seizures can be so difficult to manage it's best to have someone seasoned in that area... Good Luck, I hope you guys find something that works.

Chala - posted on 12/08/2012

Hello Kaydee! I'm so sorry your daughter has to experience seizures. It is not a fun journey and seriously nerve recking. My oldest son started having seizures at age 3. He started blacking out and he had multiple ones. The first med he was put on was Depokate and he has been on that since he was 3. He was taking off of it recently and started having seizures again. I keep his old medicine b/c my mothers intution told me not to get rid of it. I felt he was going back on it. It was the strongest of the 2 he had been taking. Depokate was the Primary med but the tried to include Keppra, Topamax, & Tegratol but none of them helped. However, they finally got to Lamictal and that is when the seizures finally came under control. He was seizure free as far as could tell for about 5 years until the doctor wanted to take him off of Depokate b/c it had the higher side effects but it worked for him & we just get his blood drawn to monitor it. I will rather deal with blood work than the seizures any day. He is 16 now & has other disabilites like Intellectual Disablities & is being evaluated for Autism. I understand your fear & pain. I didn't sleep for the first year I had to deal with him having them. I was always on pins & needles. Ask your Doctor about the Depokate and Lamictal combination. Everybodies different & you have stay on these doctors about your child b/c they can get the big head sometimes. Please fill free to contact me on Facebook (leave a message) or email me at chalabrooks@hotmail.com. I am here to support you in anyway, even if you need to vent or cry. I understand more than you can imagine. I am headed to get one of his seizure meds now but I had to stop & respond to your plea for help, guidance or support. I'm here anytime you need me. Be blessed!

Sandy - posted on 12/07/2012

Darlene .... please try taking 1 or 2 1200 mg. capsules of Lecithin a day!!! It's for brain and nerve function. It has decreased my sons seizures tremendously!!! Every day to now having one small one every month or so. You'll never know until you try!! I've tried everything on my son who is now 14 years old. 13 1/2 years of trial and error!!! Praying Lecithin works for you!!!

Sandy Lora

Virginia - posted on 12/07/2012

Kaydee,

I have been epileptic since I was 14 and I am 55.I have been on about 15 different medications and Keppra was 1 of them. I was having more seizures when I was on it too.They have never been able to controll my seizures yet. They took me off of the Keppra and put me back on the Depakote & Dilantin.and that still is not working . The seizures I had while on the Keppra was mild ones and now mine are getting worse too I just dont know what to do

Thanks

Darlene (Mason) Mitcham

Sandy - posted on 12/06/2012

Lisa ..... Melatonin works great to control nighttime seizures. 3 mg. of Melatonin an hour before bedtime helps them get into a deeper realm of sleep which cuts down on the seizures while going to sleep, during sleep and upon waking. Good luck.

Sandy Lora

Lisa - posted on 12/05/2012

Hello Kana. I've never heard of either of those terms. Her EEGs show abnormal activity in the left center region of her brain and her doctor has diagnosed her with partial complex seizure disorder. I'll have to take a look at the terms you mentioned and see if it sounds like her. thanks for the info!

Kana - posted on 12/05/2012

Lisa, does your child have BECTS or benign Rolandic seizures? These often occur during sleep, and they seem to be affected by quality of sleep, etc. Did they consider keppra? It doesn't make them as sleepy/groggy, and has worked well in conjuction with Vit B6.

Kana - posted on 12/05/2012

So sorry to hear this! We were lucky. The Keppra worked for my son. We also give Vit B6 to help with the agitation side effects. (dose is much higher than in a vitamin 50-150 mg). We have seen a little antsiness.. he stands often at school next to his chair, but otherwise, very little side effect. He is also on Vitron -C. He was never a good sleeper, which attributed to the seizures being more frequent. After an overnight EEG and sleep study, we found out he has a low ferritin (iron) level. The Vitron-C is iron combined with vit c to help with its absorption. This has been amazing in the quality of sleep he has. I think that after a certain point, they should try another med altogether or in conjunction. For whatever reason, some just don't respond to some medications. It seems like the most benign of many of the meds, if it works. It's worth a try, and it does take a while to build up to the right dose. So sorry to hear this and can imagine your stress and angst. Did you ask your neurologist when he/she would change/add a new med?

Lisa - posted on 12/05/2012

Our daughter is 3 also; her seizures started in March. They put her on Trileptal, but she has had 4 seizures since. Her dose started at 1.5 ml, twice a day and is now up to 5ml twice a day as of yesterday. I'm in the same boat as you, but different med. Difficult since our children probably don't know any warning signs or anything. Our daughter's seizures only come when she sleeps.

Kimberly - posted on 12/04/2012

My son has been on generic keppra for four years. We doesnt have any seizures on the medication, but everytime we try to wean him, he has another. Very frustrating. My son is 8 and he does have speech problems and has had delays in school. The doctors tell us it is not the meds, but I am not so sure. We did go to a naturapathic after getting no answers from neurologists. They did find candida and yeast overgrowth. I would recommend looking into alternative medicine as well as what you are already doing. Hope this helps.

Jacki - posted on 12/03/2012

Get her off Keppra. Try phenobarbitol. I have had seizures since 1 year. I am now 45. Phenobarbitol worked best for me as a small child. I hear horror stories from doctors giving small children keppra.

Sandy - posted on 12/03/2012

Lakesha ... please do let me and everyone know. I know it's helped my son and I pray it helps you. Nothing scarier than seizures.

Sandy Lora

Lakesha - posted on 12/03/2012

I sure will take that vitamin starting today, I started having grandmal seizures when I was 16, I am on carbarol and topamax for those, they do control those, but I have been on several for my petit mal sezuries including the keppra vimpat and several more so a I will definitely try any vitamin! so let you and the moms know considering I take 7 pills in the morning and 7 in the night now a couple more won't hurt especially won't hurt! I will report back to you in at least a month or 2 thanks for the advice!!!!

Sandy - posted on 12/02/2012

Lakesha ... Get some 1200 mg capsules of Lecithin in the vitamin/supplement section of CVS or Rite Aid (usually can buy 1 get 1 free on sale). It's for brain and nerve function. I've had my 14 year old son on it for about 3 years. He was having seizures every day and now he is having one small eye seizure every few months!!! It's a miracle!!! Doctors will NOT tell you about this ... nor will they say it's any good. They lie because they want to push drugs on everyone. Drugs bring perks to them but supplements do NOT!!! I swear by lecithin!!! My son only has 40% of his brain and I would NOT give him Lecithin unless I believed in it and it helped him. Drugs have been causing him aggression and anger issues. They also make him tired. Please give the Lecithin a try and let me and the rest of the mom's know if it helps. It showed a difference in 3 weeks of my son starting it. Oh, I give him 1 1200 mg. capsule every evening. You may want to take 2. But start with 1. Good luck!!!

Sandy Lora a.k.a. Dr. Mom : )

Lakesha - posted on 12/02/2012

I really hate to hear that but yeah I have been on keppra myself and my doctor had raised the dose higher and higher and and I am still having my seizures after years now I am on vimpat and have still had another 2 after my dosage is 250 in the morning and 300 at night so I hope your daughter gets better! maybe vimpat works a bit my seizures have stopped a bit more than with the keppra

Michelle - posted on 11/21/2012

I tried it. The Dr. was tired of me being on Dilantin,so i tried Keppra. I was on it for 18 days before it built up in my system. He said it would take a couple weeks. Anyway,i am on day 21 and still recovering. I ALMOST DIED! ....LITERALLY DIED! I know i need to try something new,but Keppra did nothing til it was too late to turn back. On day 18,it sent me into multiple tonic-clonic seizures along with Kepp-rage,which i remember none of. My body does not even feel the same anymore. I can't even take my BP because my heart is now so out of rhythm. I have never in my life experienced anything this traumatic,physically.....and i use to have lots of seizures,when i was 20 years old. (I'm 34,now) This is truly as close to death as my body has ever been. That first 72 hours after the first seizure was the worst. The first 12 hours,i don't remember much of,but it was still horrible. (the parts i do remember,anyway) I guess,what i'm saying is,don't do it! On that day(Nov. 18'th 2012)...which happens to be the 18'th day,i think i nearly died. At least it seems to be easing. I hope it didn't mess up my heart in a major way,like it feels. Imagine this pattern,my heart is doing this. 1..2..3..4..5..6(skip)1..2..3..4..5(skip)1..2..3..4(skip)1..2..3.(skip)1..2(skip)1(skip) RESTART. I hope noone else has such a story,because this sucks!

Esti - posted on 11/13/2012

Hi we used it for our then 5 year old... It was no fun. He was a mess. Rages and all kinds of wildness. We use lamictal now.

Haley - posted on 11/09/2012

I am in the exact same boat as you right now. Our daughters is 3, too. A year ago she was diagnosed with General Epilepsy, and they put her on Keppra. She was fine the first 6 months after using it, then the neurologist wanted to increase her dose after she had a breakthrough seizure. The last few months, she's kept having seizures and the neurologist has upped the dose. A lot of times it can have a lot to do with growth spurts and medicine to body ratio... I know it's scary, I am a tough as nails veteran, but I cry every time she has a seizure. It's awful to watch your child go through it... stay with it, keppra is the least harmful seizure drug there is. My daughter is on 3 ml twice a day now, but she can go up to 6 ml twice a day and still be fine. Remember that colds and flu can also trigger seizures. Stick with the keppra and just wait it out for a month or so, and see where you are. Please know you're not alone. It's so scary and heartbreaking to watch your child go through this, but it's going to be okay. I have felt the same about keppra and been scared about how much she's getting, but of all the seizure meds out there, Keppra does no damage to the body, so it might just be that your child (and mine) need higher doses. Good luck.

Malinda - posted on 11/08/2012

ethosuximide and depakote....Depakote is what our son takes now. I haven't heard anyting on Keppra. Just thought I would let you know that Ethosuximide didn't help, but now that he is on Depakote it seems to be working great, Good Luck

Sandy - posted on 11/07/2012

Keisha .... give him Lecithin. Over the counter for brain and nerve function. It has stopped so many of my sons seizures over the last 4 years.

Sandy Lora

Keisha - posted on 11/07/2012

My son will be four and he is on Keppra as well. He was on 1/2 tspp twice daily, now on a full tsp twice daily. However, he still haves seizures He had one in July/ August, one at the end of October, and one three days ago. It is overwhelming especially when you don't have any answers. Keppra seems to give my son a little more energy than I can handle:) He's all over the place, but I just look at it as whatever will possibly help him is worth it.

Baraa - posted on 11/05/2012

Yes i did i used it to my three old male baby actully keppra didnt stop the sezuires , he make them increase but every patient has diffrent situation whats hapening now?

Sandy - posted on 10/01/2012

Patty .. you should cut back on the Keppra faster. Which medicine are you increasing?? Trileptal? Trileptal has been my son s main drug for almost 12 1/2 years and has been good to him. Personally I would drop the Keppra quickly because the side affects are not going to get any worse than what you are dealing with. Just make sure to increase the new drug. Lecithin would be a great addition. It's over the counter for brain and nerve function. I've seen it stop my son from having seizures for 7 3/4 months ... until puberty arrived. He is doing well again with only one seizure every month or two. Good luck. Sandy Lora

Patty - posted on 10/01/2012

My daughter is 4 1/2 years old. Starting having seizures in March of 2012 and then another in August 2012. She was put on keppra since August 6th. Right now we have starting to wean her off to a different medicine. Which is Oxcarbezephine. My daughter has been having horrible mood swings and crying tantrum's. She now say s that the medicine makes her car and very sad. No one can help her out of the screaming and crying tantrum because doesn't realize what's going on. It takes about 45min to an hour for her to come out of it and fall asleep. She is dioriented in the car on the roads and doen't wan't to go certain ways. She totatlly flip's out. I have another 25 days to go until I can stop the keppra by cutting back and increasing the other.

Hope u find somethng that help's. It has been very upsetting to deal with. But it will get better.

Sandy - posted on 09/30/2012

Jena ... you should give him Lecithin in whichever form you can give him. It's helped slow and sometimes stop my son (13 Years old now) seizures. It's over the counter for brain and nerve function. My son started seizing at 9 months and is finally now having 1 seizure every month or two. If you read some of my other posts you will see that Joey has been through 6 brain surgeries and the removal of his left brain and a massive stroke. Good Luck,

Sandy Lora

Jena - posted on 09/30/2012

Hello. My son is a epileptic and he has been on Keppra for 9 months and it has been the only medication that has helped him. He is 3 years old and went from having 3-4 seizures a week to 2 seizures in the last 9 months. He takes a large does he takes 500mg of Keppra in the morning and 500mg in the evening he is about to go up to 600mg (he is only 34 lbs) in the morning and keep the 500mg in the evening. We have noticed he is more aggressive with the keppra and very easily aggitated. 2 weeks ago we started him on a vitamin supplent regimine to help with the aggression and behaviors and we have noticed a huge diffrence. I hope this helps if you ever need to chat let me know I realize how challenging it is to watch your child have very scary seizures. My son has grand mal seizures and every time he has a seizure he stops breathing... it can be very scary... I hope they find something that works for your child...

Sandy - posted on 09/25/2012

Marge .... this is the same advice that I gave Margaret but it holds true for both of you. I hope I did this right and not replied to the same one twice. Old age and stress. lol

my son is 150 lb. but has been on Trileptal, with a second drug most of the time. His dose has been 1050 mg. twice a day for at least 2 years, with 100 mg. Vimpat twice a day. If she still has problems with sleep ... give her 3 mg. Melatonin an hour before bedtime. This stopped my sons pre sleep, sleeping and waking seizures because it puts them into a deeper relaxed realm of sleep. Also, I recommend adding 1 1200 mg. capsule of Lecithin, a supplement for brain and nerve function. Lecithin stopped his seizures for 7 3/4 months ... until puberty grabbed him and shook everything up. While seizure free, I was able to drop his medicine doses down to 1/4 of what they were. Detoxing his body. Once the seizures creeped back, I increased his meds until he is where he is now. Having 1 seizure every month or two. Doctors will tell you that Lecithin is nothing but I lived through the proof. I only recommend what I have tested and tried. My son survived 6 brains surgeries (2 left hemispherectomy's which is left brain tissue surgically removed) and a massive stroke in his GOOD right frontal lobe that nearly killed him during his 6th brain surgery. I have played Dr. Mom for over 13 years. I am the one with him so I make a lot of the decisions and tell the doctors what I want to do!!! It's all a guessing game but my advice comes from trial and error while I have kept my eyes on him for any side effects, etc. Lecithin will not hurt but could definitely be a great help. Good luck. Sandy Lora

Sandy - posted on 09/25/2012

Margaret ... my son is 150 lb. but has been on Trileptal, with a second drug most of the time. His dose has been 1050 mg. twice a day for at least 2 years, with 100 mg. Vimpat twice a day. If she still has problems with sleep ... give her 3 mg. Melatonin an hour before bedtime. This stopped my sons pre sleep, sleeping and waking seizures because it puts them into a deeper relaxed realm of sleep. Also, I recommend adding 1 1200 mg. capsule of Lecithin, a supplement for brain and nerve function. Lecithin stopped his seizures for 7 3/4 months ... until puberty grabbed him and shook everything up. While seizure free, I was able to drop his medicine doses down to 1/4 of what they were. Detoxing his body. Once the seizures creeped back, I increased his meds until he is where he is now. Having 1 seizure every month or two. Doctors will tell you that Lecithin is nothing but I lived through the proof. I only recommend what I have tested and tried. My son survived 6 brains surgeries (2 left hemispherectomy's which is left brain tissue surgically removed) and a massive stroke in his GOOD right frontal lobe that nearly killed him during his 6th brain surgery. I have played Dr. Mom for over 13 years. I am the one with him so I make a lot of the decisions and tell the doctors what I want to do!!! It's all a guessing game but my advice comes from trial and error while I have kept my eyes on him for any side effects, etc. Lecithin will not hurt but could definitely be a great help. Good luck. Sandy Lora