Cannot find meds to help with seizures

Carla - posted on 09/30/2010

Hi Alexa I can relate to what you are experiencing my son also develop seizures a month before he turn a year, he also try many meds. and nothing seems to be working also the MD has perform a video EEG but cannot tell what is causing the seizure, I am his talk and walk person because he cannot do any of the above also. I wish you lots of luck and if you are able to find a solution for your son please let me know. Take care and I will keep you and your precious one in my prays.

Jody - posted on 09/28/2010

Sad to say sometimes they cannot totally be seizure free. With my son they've just controlled it enough that the seizures are not bad enough to effect his brain negatively. I request EEG overnight once a year to see if he's having seizures that are not physically showing. One thing you have to do is not "expect" anything, just go with it. You'll learn something new all the time. There's a Vagal Nerve Stimulator (VNS) my son had implanted in his chest, he's also on Topamax, Depakote and Vimpat. He still has 4-5 myoclonic seizured daily. He had an anoxic brain injury 4 years ago, went into a grand maul seizure the night I brought my newborn baby girl home while everyone was sleeping. It caused severe brain damage, they told me he would be a vegetablet that rest of his life, but really they don't know. He's walking with braces, goes to school and can feed himself, I just got a new PT that tells me she can tell he hasn't reached his full potential of coming out of this injury. Basically don't take too much to heart the negative outcomes the doctors tell you cause LOVE can do wonders for children. But just wanted to give you hope and tell you about Vimpat. It's made Logan start trying to say new words and interactively play calmer with his 4 year old sister Aryan. It's also made his seizures shorter.

Sophie - posted on 08/03/2010

Hi have you looked at the Ketogenic diet?

Heather - posted on 08/03/2010

Hi Alexa, my son is turning 3 in October. When was 4 months old he went into a coma after having a seizure, they have yet to control them and since then we have eeg's and mri' freguently. Just 2 weeks ago the doctor called to tell me that they will finally do overnights eeg for a few days. My son also has CP and global development delay. He is now on his 8th medication, all of the meds he has taken he has been allergic to. All I can say is having the overnight eeg might give you answers but remember quite often seizures are unknown and stay unknown. my son at one point was on 3. Good luck

Rikki - posted on 08/01/2010

hi, im rikki, my daughter is 14 months and she has tsc and started having seizures at 5 months old, she has been on about 6 meds before they finally found one that worked, they put her on a med called acth, if your doctor ever suggests this medicine STUDY STUDY STUDY the side effects dont go off what they say, it was a horrible mistake i made letting her neurologist talk me into putting her on this, the medicine that they found is called sabril it started working overnight. but they best medicine you can give to your son is putting it all in gods hands and pray, pray, pray! good luck and stay strong, its hard!

Annette - posted on 08/01/2010

Live in Sherborn, MA. Find me on facebook Annette Epstein

Annette - posted on 08/01/2010

He's is six ... and I would like to get over anything mushy!

Dawn - posted on 08/01/2010

The pureed part is not a bad thing to have at all. We have a vitmixer and it blends everything to smoothie style food. My son, Luke, is the opposite, he wants nothing mushy, as he calls it!!

Good luck to you and your baby boy.

Annette - posted on 08/01/2010

I have only great things to say about it even though it is a difficult diet to stay on.
Lots of fat and cream!!!
However, it did work wonders for quiet some time.
After 1/2 year however, my son was having break through seizures and losing weight because he was appitite on the diet was nil. He has an additional texture problem with foods and is only able to eat pureed foods. That was really limiting on the diet. I would like to try the diet again in a year or two because I do not see the meds working that well.
His diagnosis is just "sezure disorder"
he also has downs syndrome and low muscle tone.
But it is the seizure disorder that is holding him back more than anything.

Dawn - posted on 07/31/2010

Have you been given a diagnosis? What are your thoughts about the Keto Diet? I have a, now 4 year old, with epilepsy and swear the diet saved his life!! He too, was on Keppra, Banzel, Zorontin, and a number of other drugs and today is only on one. Let me know if you want to talk. My email is Dawn-eric@sbcglobal.net, if you email me, I can give you my cell number so we can chat. Where do you live?

Tajunanne - posted on 07/24/2010

here is a little infromation on that diet http://en.wikipedia.org/wiki/Ketogenic_d... And most kids on this diet takes very little meds to none at all so please do your reseach and talk to the doctors to see if your child is eligible and i keep all up in prayer

Tajunanne - posted on 07/24/2010

my son was not eligibility for that diet because when his keytone drop low is when he had the most seizureso that didn't work but i would encourage parents to talk to there doctors about that diet because it has save a lot of kids

Annette - posted on 07/23/2010

Still feeling that fustration and my son is six. We too ahve been through many meds. he's on 3 now
Kepra,
CLOBAZAM- Frisium -(bought thru Canada w/o insurance, used most of the world but somehow not FDA approved here - but works well)
His med is Phelbatol
he is down to 1 to2 seizures a day (still too many for me)
The meds work at first then not. Don't know why.
The best thing to have helped (over 6 months with no seizures)
was the Kitgenic diet.
Must be administered by nero physician and dietician.
It understand what it is - go to Amazon http://www.amazon.com/First-Do-No-Harm/d...
starring Meryl Streep
A heart wrenching movie about a chikld with severe seizures and what helped him.
Then if that is what you would like to try, you must find the DR.
around Boston thats' Dr. Thiele, Dir of pedeatric neurolgy at MGH -Good luck

Tajunanne - posted on 07/22/2010

parents seizures can erase your child mind my son has been taught to walk, talk, and pottie train 3 times he has forgot thing he learn like name ,abc's and others so be patience and loving and i pray no one has to walk this journey i been on but i can't complain because all my son intensive care friends are dead. So i'm blessed and he's blessed Atlanta Georgia

Tajunanne - posted on 07/22/2010

parents seizures can erase your child mind my son has been taught to walk, talk, and pottie train 3 times he has forgot thing he learn like name ,abc's and others so be patience and loving and i pray no one has to walk this journey i been on but i can't complain because all my son intensive care friends are dead. So i'm blessed and he's blessed Atlanta Georgia

Tajunanne - posted on 07/22/2010

well parents let me tell you the story of my 20 yr old life.; His seizures start when he was 1 we think he had asthma but 1 day i got a call from nursery to go to the hospital i thought a asthma attack but no a siezure. About aweek later he was at my cousin house she woke up he was blue on the floor another and for about 2-3 months he never had a sie zure on me. On day i was drive to my mother's house to wash well about 1/4 way there he started to have a seizure and when you need help theres not a cop insite i was during about 65 miles in a 30 mile area trying to get to my moms house it took me about 15 minutes to get there when i pull up i was blowing then horn crazy so she ran out i was screaming he's having a siezure so we took him out the car in the house she started working on him and i call 911 my moms a rn; they got there: another 15 mins went by he still siezing rescue then the ambulance got ther he still seizing other 15 mins go pass nothing work so they call rescue to help another 10 goes pass they put him in the ambulance tryed to lock me out i told the police if my son dies i won't be outside so i get in they call rescue back to my mom house this seizure is now 1 hour & 15 mins long so they decide to leave and go to the hospital that took 10 mins get him in the room it lasted about another 20 mins finally that 1 stop 5 minutes later another 1 starts that was a grandmal siezure after that he start having almost a 100 seizure a day he have 6 different kind and has been on every medcine there is now he takes 5 different kind but the doctors didn't think he would live to see 10 no longer 20 he has Lennox-Gastaut and he will never be seizure free so keep you head up your prayers higher love your child to the fullest spoil them give them your all

Shana - posted on 07/13/2010

Hey Alexa,
My 2 yr old had seizures only weeks old and is very delayed as well. She has had MRI's, CT's, EEG's, and we just saw a geneticist. She just sat up on her own in April and only has a slight army crawl.We are waiting on a second test that will rule out angelman syndrome.She has a lot of the characteristics of AS and Autism. We live near ATL and recently went to a neurodevelopmental school there called Jacob's Ladder Center. We are hopeful that this will make a world of difference. We did the Babies Can't Wait program with the govt. but it is not enough therapy. Have the Drs. suggested therapy or finding out why he is so behind? I always heard,"she has childhood seizures and she will grow out of them." She is currently off of Trileptel and seizure-free.(one nureologist overdosed her on Dilatin,Keppra did not work) She still has crying spells and sweats a lot at bedtime. It is all trial and error with the drs., believe me....we have been through 2 neurologists and 4 pediatricians. We have finally found an awesome female ped. I hope this helps I know how frustrated you are to see your precious boy not meeting his milestones. Keep the your chin up and trust in God.

Robyn - posted on 07/13/2010

Alexa, My daughter was 5 when the Dr. finally believed me when I said something was wrong...3 days later, after her EEG he phoned to say she must be on medication, she's having over 100 seizures a day.
The EEG is not anything to worry about. Finding the right drug is. We tried so many drugs, one would put her to sleep others made her climb the walls, another and she was one huge hive. Finally we got the right one!! Life was much better than. She moved very slow and for a single mom of 2 girls that was hard. By the time she was 15 years old she was seizure free. Enjoy your son...whatever it takes. Soon enough he'll be 28 and a wonderful Man. Best of Luck..God Bless, Robyn

Lauren - posted on 07/12/2010

Hi Im new to circle of moms and I have a little girl who is almost six. She was diagnosed with a seizure disorder at three years old. She was finally put on Tegretol last year and has had only one seizure since so we had to up her dosage. It's very frustrating to not be able to be in control with everything that happens to your child. Her speech is at a three year olds and that is so frustrating for her. Just be strong, unfortunatley everyday is a struggle and also in constant panic. Ask your doctor about the tegretol and see what they say.

Nita - posted on 07/12/2010

maybe trileptal??

Virginia - posted on 07/12/2010

Hi, im new to this group too. My daughter got dignosed with epeilepsy when she was 3months. We tried all those meds n shes on phenobarbital and lamotrigine and they are finally getting under control. She has brake threws here n there. She has had a few EEG's its just wires taped to there head. The only thing is that they have to stay still the whole time. So u might want to keep him up late!

Melissa - posted on 07/12/2010

Hi Alexa, my son has a seizure disorder and he is severely autistic. He had little seizures when he was much younger. Once he got to puberty, he started having grand mal seizures. It can go either way - they can outgrow seizures or they can be like my son. Meg's comment below already says a lot of what I would. When my son has a fever and/or illness, seizures will come. Same as when he is stressed. Some for apparently no reason at all. We've had him on many meds. We are currently trying another regimen and are praying that it helps. It is exhausting! All of the comments I see here reflect some of what our son goes through. Also, I would make time to talk to you if you would like :) Melissa Fountain

Nkki - posted on 07/11/2010

hello my name is nicole, i have a now 5 year old and lost his dad to sezures so I know the fight you are fighting just keep the faith and if all fales ask them to send her to lebohuner in memphis TN thay are the best children's hospital ever it i was not for them i would have lost my boy bunches of times he has had 12 sezures in a week before keppra is a really good med also try limactal it work and the only side affect that i have nocticed is BAD breath and BAD burps. the eegs are painless and my lil boy he still has "break through" sezures but it just depends on your childs body also talk to the doc about electric shock sezure stop it is were thay put a VERY small chip in his hand and when rubbed it send a small painless shock to the brain to stop the sezure

Stacey - posted on 07/11/2010

Our son Jackson had a 24 hour EEG video also, I am glad we did it because they pinpointed the type of seizures he was having which told them what medication to use and now his seizures are so much better. The seizures will never be a 100% contained but they are remarkably better. Hope you get some answers like we did. Good luck!

Cathy - posted on 07/10/2010

My daughter was diagnosed 3 years ago when she was 3 with partial complex seizures (she was born with hydrocephalus). She's on trileptal and depakene (liquid form of depakote). It took several months to get it right. She was good for quite a while, and the past few months she's been having more seizures again, so we're tweaking the meds again. My recommendation is to find a good neurologist who specializes in seizures. You have to like and trust him/her. I like ours because he's kind and calm and only tweaks 1 thing at a time. I hope your overnight video EEG is going well. We're doing our 2nd one next week (last one was 3 yrs ago). I think they're great because they can pinpoint what's happening (sometimes). We saw a big improvement in Maria when we got her meds right -- I think it's because her brain wasn't storming all the time. She's non-verbal, so I don't know what's going on exactly, but she seemed clearer when we got the meds right. Hard as it is, try not to compare his development with anyone else's. When I do that, I want to cry, scream, crawl into a hole; but when I compare her to how she was last year or last month, I want to jump for joy. And when I look into my sweet Maria's eyes and see her for who she is, I'm so deeply, madly in love with her, that all I care about is if she's happy. I'd love it if she could walk or talk or or or, but she's a beautiful, sweet, gentle soul and I'm crazy about her and she knows it! Good luck to you and your son!

Brianne - posted on 07/09/2010

Hi, my stepson is almost 11 and has epilepsy and CP. He has had seizures since he was very young, and it took quite a while to find the right mix of medications. Currently he takes, topamax, a small dose of phenobarbital, and most importantly, a small dose of Clonazepam (Klonopin). It has been the only drug combination that has kept him seizure free (going on over 3 years), The doctors were hesitant to give it to him, because they say the body gets used to it and it loses its effectiveness over time, requiring you to up the dose often. So far, he is still on the lowest dose and doing fine.

I know that what works for one will not work for all, but I thought I'd share our success with this drug. Good luck to you in finding what works for your little guy!

Deedee - posted on 07/09/2010

My daughter who is now 19, was found to have seizure when she was 15 months. We found out because she actually would turn grey from so many seizures. We were on all kinds of meds. usually with depakote. She tried tegretol and was extremely allergic to it. The doctors had her on so many med. at one time we were up to 12 pills a day just in depakote.. she would stop having them and then in two weeks they would start up again. her body would get use to the med.. and we would have to up the dose. Because she would have so many a day.. they said she wouldn't get beyond 2nd grade.. and at one time told us she wouldn't see her next Christmas.. I am please to announce, my daughter where she still has some seizures usually when not enough sleep, or too stressed, or flashing lights.. she was top of her graduating class (high school) for allied Medical program, now attends college away from home to be equine therapy (she is doing therapy for children with special needs, or behavioral issues using horses).. So remember the doctors know alot.. but our daughter had determination.. and with every challenge she always faced it with a positive attitude and grace. We are very proud of her.

Renee - posted on 07/09/2010

Ihad a video eeg before my seizure surgery.It helps the dr's alot.It can be a hard frustrating battle finding the right combo.Have you tried tegretol or depakote?Which type of seizure can determine which meds work better too.you said seizures are caused by a neuro dsorder.Which on is that what's causing the delays rather than seizures it's self.IPlease don't hesitate to askme questions I had seizure my first 15 years until meds didn't work and I had brain surgery

Jennifer - posted on 07/08/2010

Sarah, my daughter was born with dandy walker defect at the age of 2 mnths she was put on seizure meds at this time she was having at least 200 small seizures a day. she was taking 4 meds 3x a day. after the medication they went to about 30 a day. she was on trilleptal,phenobarbatol,topomax,clonapen one other thing we tried was the kitogenic diet it did not work for her but i do know of some that it has worked for, we also had to eliminate all sugar and make sure bowel movements were regular as this too caused her to seize.

RACHENDA - posted on 07/08/2010

Has he had an MRI? I had to bring her in when she was sleepy so they could test her while she was asleep. That's when they told me she was having seizures in her sleep. I so understand your frustration.

Alexa - posted on 07/08/2010

Well, as it turns out the Video EEG didn't help us at all. According to the neuro, even with the video, he couldn't tell when my son was having a seizure. They know he was having seizures, but they couldn't tell if it was his body just jerking or trembles from seizures. I left 10 times more frustrated than I went in!!!! Ugh!!!

RACHENDA - posted on 07/08/2010

Hello, my daughter also has a neurological disorder PKD {Dyskensia} which causes her to lose muscle control of her right side. The Neurologist had an MRI done and it shows that she has seizures in her sleep. I noticed when she was a baby that she wasn't a good sleeper at all and would toss and turn all night. When she was 4 month's I noticed that she would make funny movements with her right arm. At first I thought she was dancing to music, but when the music was off she would still do those moviments. When I first brought it to my husbands attention he brushed it off saying that I was making a big thing over nothing. I still continued to pay attention to her movements and finally I decided to make an appointment with the Pediatrician who then referred me to the Neurologist. When I went to my first apt with the Neurologist he said he wanted to do an MRI and that someone would call me to schedule it but no one ever did. I didn't think anything of it until she learned to walk. That's when I noticed that every time I would take her out of her highchair she would stumble and fall up against the cabinet on the right side. That's when I called the Neurologist back and got the appointment for the MRI. The neurologist ended up prescribing her Keppra which did nothing for her but make her episodes worse so I stopped giving it to her. She is now scheduled to see another Neurologist who specializes in Epilepsy in August. I hope that they can prescribe something to help her because she gets so frustrated with the episodes and yells for it to stop and that it hurts. It's so hard to see her go through this so I understand your frustration.

Brena - posted on 07/07/2010

It takes time to find the right meds.My child started having seizures at 7 months, she has been on a bunch of meds. They control them for a while and then they start back, and it's always a different type. She recently just had her second EEG and we are waiting on the results. With the Video EEG they can determine what type of seizure your child is having and try to give meds that treats that kind of seizure. It's a shuffling game unfortunately, but for me I have realize and is aware that there may be different combinations of meds as long as my child continues to have seizures.My child is on 4 meds and a vitamin supplement for seizures.

Gwendolyn - posted on 07/05/2010

Control and seizures? Well I am fighting to keep epilepsy from controlling our every waking and sleeping moments too. Every child is different although we share some unnerving battles. My son had control and went a long time seizure free and just started up again. His triggers sometimes seem to be EVERYTHING and nothing at all. I have learned over the years to weather my frustration and paint on a fake smile when necessary since he is only five had has no clue what is going on. As for the sleep study we did them in the hospital and by way of a take home machine. I had to take him to my daughter’s day care to pick her up and that probably was the worst of it—all the looks and inappropriate questions!!! I lovingly suggest that you stop worrying about comparing your child to those “alleged normal milestones”. It doesn’t help you or your child. For many kids the seizures are generally not harmful. Yes I wanted to slap every doctor who told me that—and I am not a violent person. Seek out local resources of support for you and your child. The public school system also has resources available starting at age 4 typically. As for medication and control it takes time to find the right effective combination for your child, then it must be adjusted as your child grows and changes. You will find loving support and encouragement in me and this community. You are not alone!

Meg - posted on 07/05/2010

hi Alexa, my daughter has a seizure disorder and mild CP. (to name afew of her DX) she has been having seizures since she was 10 days old ... any way she is now 5 1/2 and has had quite afew video EEGs. We have had some good out comes with different RX's, but to find the right mix is hard because of certian factors (quality of sleep/ growth/ illness/ eating habbits) she still has some break through seizures.
have they taken a CT or MRI yet?
Unfortuneatly she suffers from 5 kinds of seizures and this week she has added yet another kind out of the blue so we have been told that we have to add yet another med to the mix...she will be adding another med to the 5 anti seizure meds she already takes.
Good luck tomarrow let me know if you need more info. I would love to talk.