kind of new to epilepsy....have some questions

Shawn - posted on 09/09/2010

Hi Karen,

Things change sometimes unexpectedly. I am epileptic and just as an adult my dosage has had to be changed. Keeping her blood level monitored depending on her meds can make a difference. Ask questions, questions and more questions. Sometimes we hold believes about why we seizure like stress ect. or we can't do something and we ask a question and it seems so obvious. When I was pregnant, I started to have alot of seizures and I was freaking out. I asked my doctor and he explained that my blood volume increased so much that it was diluting my meds. I also have had break through seizures because I took my meds later then my usual times. ect. Could be lots of reasons. It sounds like you know more than you think. Good luck.

Kandy - posted on 09/05/2010

hi karen my daughter is 13th and is epilepsy the dr. try different meds. that didnt help her so i found a different dr.thats help us better, she had surgery of the brain to pin point where the seruzies was coming from.she has two different kinds of serizure, but the best thing to do is keep asking questions to find out what you need to know,my daughter is on three different kids of meds.she has to wear a helment because she has then so bad.your not alone its hard to dill with but you learn to work with it and she has so many EGG,MRI,XRAY,you name it she has had done,they still cant find out why she has then though. so hope you find something out because we are still trying to find out for my daughter, so good luck and take care. thanks kandy

Lauren - posted on 08/31/2010

Hi My daughter is 9 now and has suffered seizures since she was 1 month old I passed epilepsy to her we both suffer partial complex seizures and have them faily controlled with both trileptal and lamictal for Lexi and tegretol XR for me I have taken tegretol since i was 8yrs old and have been for the most part controlled one thing YOU MUST CALL THE Dr if she has any growth spurts the minute you notice things getting tight or some one who just saw her recently mention she grew call the dr and have her med levels monitored if you stay on top of her growing then meds can be changed before she has a breakthrough seizure the same goes for weight changes weigh her once a week and keep a diary of everything weight diet seizures staring spells headaches fevers (seizure trigger) Dr. appt and phone calls when blood it drawn vaccines any illness from a cold to the chicken pox all of it goes in the diary with time occurance date also include length of seizures anything you feel is strange or not normal for her should be in there as well present this diary to the dr monthly and have the receptionist copy it and include it in her record it forces the dr. to keep up to date on her changes when he looks back through her record he will see things he may not have thought of also provide diary to ER if she has to visit and their records will be more complete the school should have a copy as well also have her teacher keep a diary as well of everything that goes on in class each day and present that to the dr also as for diagnostics EEG and MRI are good so is a CT scan an EMU and an EMG but break them up or it may be overwhelming for her I hope I could help a little good luck and be as annoying to everyone as you can it is the only way to get her seizures under control while she is growing

Wanda - posted on 08/30/2010

Ask for a Peet scan. My son had 5 EEG's before any activity was seen. We also had a sleep study done which showed possible seizure activity. Do what ever you have to do for your child. PERIOD!! GOOD LUCK

Tanza - posted on 08/30/2010

HI, Karen - Our son is 8 -almost 9yrs old now. he was diagnosed the beginning of the year after he had his first seen grand mal seizure one morning in March.

We took him to Urgent Care as he fell back asleep after ad woke up seeming fine. The pediatrician referred him to a ped neurologist who sent him for an EEG the following week. They called the day after saying the results were abnormal. We were away from home for the month and so were relieved when the initial thought was that it could be benign rolandic epilepsy - since they thought this was his one and only seizure and given the area of the abnormal activity. They sent him for an MRI but that came back clean.

However, it soon became clear that it was not that simple - what we thought were tics that had started a few months prior ( but never occurred in the dr's office) were not that but partial complex seizures during the day as well as occuring with more frequency when he laid down to go to sleep - plus additional grand mal seizures in the early morning hours.

Once we found a ped neurologist at home , he had to be placed on medication and Thank God for Keppra! It has worked wonderfully for us. Our son is now 3mths seizure free!. That after - I totalled it up just now after hearing other peoples totals - he had almost 400 seizures between the beginning of March to mid May! So needless to say we were happy to see him back to himself and for us to get some sleep! =-) With the Keppra, we increased dosage until it was close to the weight determined dosage and it had controlled the seizures. Then we had another EEG.

It has been quite a scary whirlwind! I agree with the rest that say to be your child's advocate and ask, ask ,ask, read on line - and don't be afraid to speak up. Good luck!!

Miriam - posted on 08/30/2010

Yes, her epilepsy could have changed. It has been 2 years since her first diagnosis. she is young, epilepsy sometimes changes. Sounds like she has Tonic Clonic..maybe...and they may just be changing the way they show themselves. You do not need an MRI ..I have no idea why people get these..sometimes docs want to rule out any mass in the brain..an EEG is usually enough. Upping meds can be fine if that med is right for that type of Epilepsy. If they change the meds that means, generally , that your childs epilepsy has changed. Also, make sure you research/ask doc about the side effect of any drug you give your child. Don't, please, forget about sleep and diet. Enough sleep is soooooooooooo important. Diet, make sure you are not giving her too much junk....a more healthy diet will be beneficial. Potatoes always were a great food for me when I was young. Always ask your child how they feel after they eat something new. Don't give anything with artificial sweetener. This is my experience. I am 45 and have had various kinds of epilepsy since I was 7. I live a good life ...your child will be fine

DAWN - posted on 08/29/2010

I'm epileptic, not my kids. I had my first grand-mal seizure when I was 14, but my dr believes I've been having them all my life, just in staring spells, like deep day-dreaming.
Is your daughter seeing a pediatric neurologist or one that specializes in eplilepsy? Alot of times the type of dr she is seeing makes a big differance.
The new type of siezure is not uncommon depending on where her siezures start. Is is frontal lobe, left or right side? Temporal lobe? All those things matter on the type of seizures that are occuring.
A seizure or any abnormal activity in the brain only shows up on an EEG if it is happening at the time of the test. I've had several EEG's and a few MRIs. The only EEG that showed anything is when I stayed in my dr's office hooked up to the machine until I had a seizure. That is what will show where the seizures originate and how they are affecting the brain at that time.
On the medicanes, not all meds treat the same types of seizures. Some are for grand-mal, petit-mal and all the other differant types of seizures. Some meds will cancel out others completly or just lessen the effect. Her levels should be tested regulary to see how much is being released in her system. That is the only way that the right dose can be monitered with certain medicanes. I'm sure the drs have told you that already though.
Nothing is wrong because of the break through seizures. Nothing works perfectly all the time, it happens alot. Hope this mighta helped you a bit

Shelly - posted on 08/29/2010

Your child's meds will probably need to be increased as she grows, she will need to take more as she gets bigger. Some peoples seizures change or they have different kinds of seizures to-my daughter has had several different kinds of seizures in her 29 yrs with Epilepsy. Different types of meds and combos of meds may be needed to find just the right amounts for your daughter. All kids are different and their brains are all affected in unique ways that are not the same for every child. Any information the Dr's can get from EEGs-Pet scans-MRIs or any other tests will help the drs diagnose and treat your daughter. Ask questions and get a second opinion if you are unsure whether the dr is doing all he can for your child. Be informed of side effects and drugs that are suggested by her drs. You know what is "normal" for your child and you will know instinctively if there is something wrong. Sometimes we never know what will trigger a seizure or when to expect them. They can be random. Some people have an "aura" or sort of premonition that they are gonna have a seizure and some never know-they are just hit with it. (kind of like being hit by a truck they didn't see coming) My daughter sometimes knows when she will have a seizure and sometimes she doesn't. Each person is different and their experiences will be as different as they are. Keep a seizure log-it will help you and her drs to know if there are specific things that bring on her seizures or if there is any pattern like-as some people with Epilepsy hit puberty they have different seizures and girls sometime have more or less during or before their periods. Sometime kids have to take more than one med at a time because one by itself is not enough. Different drugs do different things. Find a dr that you trust -ask questions and keep trying till you find what is best for your child.

Sujey - posted on 08/29/2010

hi my name is sujey my almost 2 year old daughter has been epilepsy since she was 29 days old. she was put on keppra after she had suffered a intervantricular hemorrage grade 3 which they said she wouldnt recover from but shes doing great. when i took her home everything was going great but until she started to have a different seizure i called the doctor and she made ann app for her to have an egg and the diagnosed her with the west symdrom. they gave her topamax and it helped her out. shes currently on topamax only they have just removed the keppra. but to answer your question about if an egg is enough and if you should ask for an mri you should my daughter had both of them done constanly and it really helps for a better diagnose so go ahead and ask for the mri aswell because us as parents want the best for our children and every resource counts.

Shelly - posted on 08/28/2010

If your child has more than one kind of seizure-sometimes a combination of meds can work better to help control seizures. My daughter has had epilepsy since birth and is 29 now. She has had many kinds of seizures, she had brain surgery in Seattle at age 15-because in the past she had sometimes as many as 10 Grand Mal seizures a day. (She has had many differrent types of seizures) Don't let this scare you. Your daughter is different than any other person with epilepsy and will have different experiences than any one else. Each case is different. My daughter now has only 1-3 seizures a month, which is the least she has had for all of her life. There are many meds available today that work in different ways for different types of seizures. Keep track of your daughter's seizures so you can tell the Dr's about them and what happens before-during and after each seizure. This will help the Dr's help her and find the best combination of treatment that can help her have as normal a life as possible.

Karen - posted on 03/27/2010

Thanks for all the helpful information and stories! We got the EEG results, and they are normal. She is seeing a pediatric neurologist, not just a regular dr. The neuro just seems to think that her dosage isn't high enough. She said for my daughters weight she is still on the low end of the dosing and has alot of room to work with. In response to my question about why her seizure was different the neuro said it could be because her brain is still developing. She explained to me in her brain probably the same thing is happening, but what we see on the outside is different. I do faithfully give her med 9am and 9pm and she has never skipped a dose. I am curious why the neuro decided not to have her levels checked because pretty much everyone who has responded has said to do that. At first she wanted them done, then she said it wasn't necessary. I am homeschooling her now and plan on sending her to school for 1st grade. I am of course extremely nervous about this. I hope that she doesn't feel different than the other kids if she has a seizure there. I have not noticed any trouble with her schooling at home, but of course it is more laid back here then at actual school. I just wish they would say she has epilepsy because of X and she will have a seizure everytime she.... fill in the blank. Guess that is just too easy though. Does anyone know if it is possible her 2 younger sisters have a chance of having epilepsy too? Thanks again everyone for being so helpful! :)

ALICIA - posted on 03/27/2010

IT'S A SCARY, CONFUSING SITUATION!!!! TRUST ME, I KNOW!!! MY DAUGHTER'S STARTED AT THE AGE OF 4. IN THE BEGINNING, IT'S GOING TO BE A MATTER OF EXPLORATORY TESTING & DOSAGES, MEDS CHANGING TO SEE WHAT WORKS FOR HER BODY WEIGHT & THE LENGTH OF TIME IT CONTROLS THE SEIZURES. THEIR ARE SO MANY TYPES OF SEIZURES & SOMETIMES A PERSON CAN HAVE MORE THAN 1 TYPE SO BODY'S ACTIONS WILL BE BASED ON THE KIND AT THAT MOMENT. IT'S GOING TO BE A LONG ROAD AHEAD TO GET IT JUST RIGHT. TRY TO GIVE HER THE MEDS AT THE SAME TIME EACH DAY, AS THAT HELPS TO KEEP THE MEDS BALANCED IN HER SYSTEM & KEEP A WRITTEN RECORD OF EVERYTHING (actions before, during & after seizures, length of time for seizures, sounds, eye movement, possible triggers, ect.) KEEP HER LEVELS CHECKED (the amount of meds in her system should be up to a certain level when checked through blood test,this tells them if she need a higher or lower dosage & what is needed to control the seizures.) KEEP EVERYONE WHO CARES FOR HER INFORMED ON HOW TO HANDLE HER SEIZURE CARE. (My daughter has had them at school, while out & about, at sleepovers, ect.) I RECOMMEND ALL THE TEST, AS 1 MAY CATCH WHAT THE OTHER MISSED, BUT THERE'S STILL A CHANCE THEY MAY SHOW NOTHING. IT CAN BE VERY AGGRAVATING. PAY ATTENTION TO THE ATTENTION THE DOCTOR'S GIVING TO THE CARE OF YOUR CHILD ALSO. WE LIKE TO STAY LOYAL TO ONE, BUT SOMETIMES CHANGE IS NECESSARY. (research her doctor's history, as well as others for possible back-up). KEEP UP WITH HER SCHOOLING TO KNOW IF THE SEIZURES ARE HAVING ANY EFFECTS ON HER LEARNING OR BEHAVIOR IN CASE SHE NEEDS ANY MODIFICATIONS, BUT ALWAYS ENCOURAGE HER & PUSH HER THAT EXTRA STEP, SO SHE FEELS NO DIFFERENT FROM ANY OTHER CHILD. AND HAVE OTHERS TO TREAT HER JUST THE SAME.

Kimberley - posted on 03/26/2010

Hi I am 32 and have epileptic seizures since I was six months and now my daughter has been diagnosed their are so many diffrent types of seizures it may not mean that she is getting worse it may just be her body is growing and changing and the types of seizures are changing as well again I am not a doctor but jsut giving an opinion on what might happen I gennerally had peti mali but as I got older they got better and then about 3 years ago they came back and now when I have them sometimes I cannot talk but as a kid my arm would go knumb and I would get dizzy and have bad headaches so it all depends on the person .

Elaine - posted on 03/26/2010

I have had both drugs one when twelve and ethosuximide at 39 as well when child had phenabarbotin worth looking into.

Elaine - posted on 03/26/2010

Have you had a drug called phenabarbotin thats is designed for children or ethosuximide I had when twelve. Only advice I can offer as a mum is pursue different avenues of drugs, unfortunately EEG don't always give the answers that you are looking for. As a mum of suspected E child who is twelve pursue all avenues don't let consultants fob you off with anything. It sounds like increase does'nt work sometimes combinations work, for example I am on Keppra and Lamictol as him about a combination perhaps.
Explore all avenues and he has diagnosed them with the right E there are many kinds if diagnosed wrong then that drug won't work or they have become immune to it. Which is what happened to me and had mine since a small child plenty of drugs to try. Ask him or push him if necessary.

Alice - posted on 03/26/2010

Hi Karen, I hope all is going good for you. I just wanted to share my story with you about the medication Triliptal with you. When my daughter was diagnosed in 2007 with epilepsy she was placed on Triliptal, she was on it for a total of 6 months before I noticed that she was having a different kind of seizure. She was having the break through episodes to where it didn't last long at all to the full body convulsions "grand mal seizures". They increased the medication to little effect. Than they took her off the medication and put her on Keppra and she has been on it for 2 and half years. Still to this day it's working. My daughter had brain surgery in September 2009 for intractible epilepsy. All medication has side effects you just need to be opened to try different ones.

I have learned with my daughter when she was first diagnosed that everything was normal MRI, CT SCAN and EEG's nothing was showing up her first diangoses was acid reflux...I dont' even want to go there...a whole other story! They only way that they found out what was going on with her was the LTM (long term monitoring) EEG. everytime they would do an EEG everything would come back normal. The other reason my daughters seizures increased was they started to be intractable (no medication would stop them ~ at one point they were happening anywhere from 20 a day to 40 a day. she couldn't hold her head up, walk or use her left side) they did more intense testing and found out that she was a candidate for a hemisphereotomy and when they did the surgery they diagnosed her with cortical dysplasia. Which is only diagnosable through removing part of the brain and biopsy it. The doctor told us based on his expertise this is what he thought it was (before surgery)...
so here's what I would do....I would request to do a LTM EEG they will be able to tell if it looks different if you had one before...I would also request that medication be changed if they wont do an LTM....have them write a script for a helment for her.
My one question for you is are you taking her to a specialist? I was taking my daughter to one neurologist but I wasn't happy what they where saying so I went else where and that is when I got my answers. You might have to take her else where...YOU ARE YOUR LITTLE GIRLS VOICE. BE HER ADVOCANT...(spelling?) Sometimes doctors need to be told NO this is what I want done!!!

before I forget if your daughter isn't having them while the EEG or MRI or CT Scan is going on it will come back normal to my understanding dealing with the same thing.

I hope you the very best and please let me know how the appointmet goes...Thanks

Amanda - posted on 03/25/2010

the blood lvls are to check the med lvls to see if they are the right ballence for her wieght ect , dep on meds they may check as with my girl her liver functions and kidneys as some meds like epilem like my girl is on can damage it

Amanda - posted on 03/25/2010

my 6yr old girl started epilem this year after she had a clonic tonic seizure lastng over 1 hour and several small ones in the hours followin she was but on an increasing does it started at 2.5mls morning and night and over 4 weeks was increased to 9.2mls moroning and night i am new too it all too but from what i have read , maybe the mde is no longer workin for her. we havent had any big ones but have had absent ones that she suffers too . we had an egg done it showed that there was abnormal brain activity and that she had epilepsy . good luck with it all ask lots of questions i do

Heather - posted on 03/25/2010

Hi Karen, They can draw blood to check the level of medication in her system to better understand how much of it she is absorbing into her system and if the level is within the normal range. If you google trileptal levels you might be able to find some info. There are more than those 3 triggers- vibration, flashing lights like blacklights can cause them, I have a friend whose seizures were triggered by computer monitors for a while. Also, sickness can bring them on. It's common for jacob to have breakthroughs when he's sick- something to do with the immune system being under stress can lower the threshold, as can fevers. Don't know why though. It would be easier to know what caused them! We've been hunting for years and haven't found any triggers. Sometimes it's just random. Jacob is in kindergarten. He actually entered the school system at 3 yrs old b/c he's handicapped and gets all his therapies at school. I know what you mean about living in constant fear. I didn't want to let jacob out of my sight for many years. still have a hard time doing it. Believe it or not, the hyper-awareness you are now feeling will just become a pat of who you are. As mothers, we're always aware of our kids, even in our sleep, but there's a heightened sense of that when the seizures start. As for school, I would call the prinicpal and set up a mtng w that person and the school nurse before the end of this school year. They're prob used to kids with seizures. They'll come up with a seizure plan if she has one at school and what to do, incl the steps you want them to take if she has one. Maybe they can even introduce you to the teacher she'll have so you already have a comfort level before she starts.

Karen - posted on 03/24/2010

Thanks for responding, Heather! That does make sense about the weight increase. The seizure she had on Christmas Eve she didn't actaully pass out, as you said not as "deep" as the previous ones. When I called the dr to let them know what happened after the last one, they wanted blood work done as well as the EEG, but called back later in the day to say it was not necessary and to increase her meds and still come for the EEG. You said a blood draw to check her levels. What levels do you mean? I do keep a seizure log, 6 out of the 8 have not happened at home. I asked the dr at her check up in Feb if excitement could be a cause. That is the only thing that I have found that is common. When she has been doing something exciting to her, Easter egg hunt, going to see Santa, riding her bike for the first time, camping trip. That is only half though. The dr told me really only hunger, missed meds, and sleep deprivation are triggers. I am not sure I 100% agree with that. It would be so much easier to know an exact reason. Does your son go to kindergarten? I homeschool my daughter but next year I am planning to send her to school. I have 2 other girls and it is just too much. I am so scared about her having a seizure at school. Now that she is having seizures again it scares me just for her to do everyday things. I get so worried she is going to injure herself. The last one she fell off a swing (camping). Luckily she had pretty much just sat down on it, and wasn't high up. Thanks again for responding!

Heather - posted on 03/24/2010

Hi Karen, My son is 6 and started seizures when he was about 18 mths. I have found that with meds, there are often breakthrough seizures in relation to growth spurts. Most meds are based on weight, and when her weight increases but the meds don't then the therapeutic level is lowered and breakthroughs happen. Also, the seizures are different because she has the meds in her system. They're still working, but at a lower level. I've found that Jacob's aren't as "deep" for lack of a better word as they have been in the past. If she just started meds a yr ago and this one has been working for her they'll prob see how the increased dosage works out. You can always req a blood draw to see what her levels are, if they're on the high or low end of the acceptable range. I can't really answer your question about the EEG vs MRI b/c we had one when he was 10 mths old due to a small head circumference. He also had about 80 seizures in the first yr before we found the right med combo. FYI, Jacob's EEG's were for the most part normal for the first few years. Have you done a seizure log to determine possible triggers? When, where, time of day, etc? sometimes a trigger can be found. Not in our case though. Oh well.