6 Year Old Son Diagnosed with Benign Focal Epilepsy

[MomOfSam]

Hi, my name is Jennifer, I am new to this forum. I am looking to connect with other parents of children with Benign Focal Epilepsy. My 6 year old son Sam was diagnosed with Benign Focal Epilepsy in January 2011. It all began with a grand mal seizure at 6:50 in the morning on January 15th. He was diagnosed shortly after with BFE after an EEG that showed “subtle” blips. Since then he has had 7 seizures in the early morning hours. I have recorded his diet and activity over this time and have eliminated most foods I had suspected. The seizures seem to be time related. They have been anywhere from 40 to 60 days apart. Has anyone experienced seizures that occur at a regular time intervals? In addition to the seizures he began having bad headaches in February of 2011. He had 1-2 a week for 4 weeks and then has been fine for 6 months. The headaches have started back up this week. He has had 2 this week. Sam is not on any medication (except motrin occasionally for the headaches), has no behavioral issues, and otherwise is happy, healthy and active. But, I continue to have this nagging feeling that we should be doing something. The Drs assure me there is nothing to do that he is fine. Any experience, thoughts or advice would be greatly appreciated!!

 

[epileric]

I"m not a parent but I did want to welcome you to CWE.

Personally, I think that if your child is having seizures & something did show on the EEG then you should talk to a neurologist who is more familiar with seizures.

 

[Nakamova]

Hi Jennifer, welcome to CWE!

A 40 to 60 day time lag is too broad to indicate any particular pattern -- especially given how much your son's 6-year-old brain is developing and changing at this time. Generally, BFE seizures are infrequent, and the majority go into remission within three years. In the meantime, you are doing the right thing in looking for patterns or possible triggers, and paying close attention. If you do notice a change in your son's seizures, let his doctors know.

Best,
Nakamova

 

[Sadie]

Hi Jeniffer. i know that when my son (who has childhood absence epilepsy) was first diagnosed via an EEG reading they immediatly referred him to have an MRI scan and Lumber Punture done just to completely rule out anything else. i was a bit unsure at first but realised that a thorough check was needed to ensure there were no probs. It may be worth requesting for these proceedures to be done.All the very best with everything.

 

[candice]

Hi i am also new here, my son has Focal epilepsy, he also suffers from headaches!! It all started with what we thought were regular migranes until he had a grand mal seizure, we rushed him to hospital and it was the worst day of my life, he had migranes (which we now know were seizures) regularly every 4 weeks, you could almost predict them to the day...after several different drugs he seems to be responding well to Keppra. His headaches have also dramatically improved, he had them so bad he would scream and be sick...such a scary time you feel so helpless, also his seizures were always first thing in the morning although i have my suspicions that he may have had seizures in the night as well.....its an awful thing for a parent to go through and i know exactly how you feel!!!For my son the most important thing is that he gets enough sleep which is not always easy :-((

 

[MomOfSam]

Hi Candice, Thank you for the reply! It sounds like we are going through very similiar and scary times . We have seen 3 pediatric neurologists at the Cleveland Clinic & Akron Children's Hospital ( 2 who specialize in epilepsy, 1 who specializes in Headaches & Migranes ). The doctors have told us that it is very common for children with BFE to have Migranes. None of the doctors mentioned they could be seizures .... I had not thought of that myself. But now I am wondering, all of the times Sam has had a migrane he has woken up with it, or it starts 10-15 minutes after awakening. The Pediatiric Neurologist who specializes in headaches said this was not common, typically migranes would come on later in the day. Sam is not on any medication for the seizures or headaches (with the exception of occassional motrin). The Drs did not advise he be put on medication. They said they do not medicate for BFE any longer. How is your son doing on Keppra? Did your Dr's consider not medicating? Did you get any explanation or information on why the seizures would be happening every 4 weeks? Sam has had 9 grand mal seizures, all while he is sleeping, between 5 and 7 in the morning, approx 35-60 days apart. I can barely sleep now, I sleep in his room with him and the Dr's have said this is not necessary, but how do I leave him ??? Thanks for any advice or input!

 

[candice]

Hi
Yes it is scary and i also sleep in the same room as my son...i have no idea how i will ever break that habit, ok he is 9 so its ok but later when hes 12?? scary!
So far Keppra has been great, we have had no seizures and no headaches which makes me wonder what the association is between epilepsy and migranes...why has he stopped having headaches with this drug? I have been told they are 2 seperate illnesses...
I have heard several explanations..why he has his seizures every 4 weeks..from the moon to hormones, i have been told not to give him soya because it helps make estrogen...I know that sleep is very important for my son..he goes to bed at 7,30 every day..i have noticed that late nights make things worse...
we always knew he needed meds because the scans showed a shadow on the left side of the brain...no one seems to be able explain exactly what this is but it doesnt seem to be very positive...i think my sons epilepsy is a life long problem unless we operate:-((
I also give him vitamin B6 and omega 6 fish oil..it should help with side effects of the drugs....so far i can only say keppra has been great!!I am a nrevous wreck but he is coping very well!!!

 

[donnajane]

Hi Jennifer, Welcome!!!! I have an almost 12 months old who is currently having varied seziures/events but so far has had 4 clear EEG's. He has seizures/events most days but they are very short. At the moment the events he has are one where he vagues out and goes sideways and he also can have his arms fly up or out to the side out of his control. He has Shudder Syndrome which are a bengin event where basically his arms go stiff and tremmor very fast and while this is happening his eyes are usually wide open almost startled. Thankfully he seems to be "outgrowing" his Shudder Syndrome as at one point he was having well over 100 a day, each only 2-5sec long. Development wise he is a little slower but not hugely and we are hoping now his "Shudder Syndrome" seems to have almost gone he now will find it easier to develop more normally. At the moment his Nureo and his Paed are now saying lets wait and see where this goes as due to his age his brain is still developing so much and they are hoping he will outgrow his other events as it seems he is with the "Shudder Sydrome". I finnally had the courage to unpack his hospital bag just before christmas, I had one ready just incase we needed to make the mad dash to ED has we had a couple of time. Now I feel more comfortable with what is happening with him although I do realise it can change.
I wish I knew what the outcome will be for my youngest child but I know only time will tell.
I feel so lucky I found this site as I have often asked questions and get the most straight forward answers and it is great to be able to "chat" with other parents who understand.
Donnjane

 

[momofthree]

My son is also on Keppra and it has worked to control his grand mal seizures 100% except for when he was ill, at that point we increased the dose and are now mantaining a much higher level, which scares me, how high can we go, he has more then quadrupled his does since diagnosis 9 months ago, he is now 8. We have sleep side effects and he is extremely emotional but I do not know if the emotion is from the keppra, I am told the sleep is. We give him 2mg of Melatonin and that takes the issue away. As far as sleeping it took a lot to get through it, he slept with us, then we slept with him but now we have a video and audio monitor in his room and while I am not 100% at ease I am okay with it. Like Candice however I worry about as he gets to be a teen, he is not going to want to be on a monitor, nor do I want to spy on him either. I am thinking of a seizure awareness dog but it is currently out of our reach financially. My son does not have a benign childhood epilepsy but even so he does have a chance of outgrowing it, my fingers are crossed. He was in the hospital when he was sick because his seizures started to spin out of control and he told me that if he could have one wish it would be that he would not have epilepsy any more . Good luck to you all!!!

 

[candice]

My son is the same..he wishes he didnt have epilepsy and i ask myself everyday..why us...but we must carry on and there are many people worse off than us!!! I also have a monitor and one day he just isnt going to put up with it anymore!!I want him to have a normal life but we have to accept that it isnt a normal life....so many people have said to me " you cant always be there" "let him live" but my belief is that it is my job to protect him and and i will do everything in my power to make sure nothing happens to him.....i can only pray that he will be ok, we arent ready to operate but maybe one day they will have new procedures..who knows!! I knew we were going to start keppra and before we did i started giving my son omega 3 and vitamin b6...dont know if it really works but he hasnt had any side effects so far!!

 

[tjsmom]

My son is also on Keppra and it has worked to control his grand mal seizures 100% except for when he was ill, at that point we increased the dose and are now mantaining a much higher level, which scares me, how high can we go, he has more then quadrupled his does since diagnosis 9 months ago, he is now 8. We have sleep side effects and he is extremely emotional but I do not know if the emotion is from the keppra, I am told the sleep is. We give him 2mg of Melatonin and that takes the issue away. As far as sleeping it took a lot to get through it, he slept with us, then we slept with him but now we have a video and audio monitor in his room and while I am not 100% at ease I am okay with it. Like Candice however I worry about as he gets to be a teen, he is not going to want to be on a monitor, nor do I want to spy on him either. I am thinking of a seizure awareness dog but it is currently out of our reach financially. My son does not have a benign childhood epilepsy but even so he does have a chance of outgrowing it, my fingers are crossed. He was in the hospital when he was sick because his seizures started to spin out of control and he told me that if he could have one wish it would be that he would not have epilepsy any more . Good luck to you all!!!

if you want to get a seizure awareness dog there are lots of places that offer them to families that the children have the problem and its done with grants and other funds to help get the dog at no cost to the family!!! i am currently looking into this for my son who was diagnosed with doose syndrome. they also have grants that allow you to get finances for vet bills even for food for the dog, its definitly worth checking out!!!! i am also wanting to look into the video and audio for my son. i was sleeping right next to him everynight, but now he is getting annoyed with it. he is only 4, so i sleep on the couch because the living room is closer then my room. but i want to be able to keep a better eye on him.

 

[momofthree]

Ttjsmom, I am going to look into the grants and see what I find, thank you. Candice, people also give me advice like that but they don't understand how hard it is if they don't have a child with a chronic illness. Since my sons seizures, like yours, are nocturnal it makes the nights scary at times. It had gotten better, so much so that I was lulled into this false sense of security and then BANG, when he was sick he had tons of partials and the seizures where his limbs freeze in crazy positions and he can't move. It used to be that I put my children to bed and I can relax and have a glass of wine, now when I put my son to bed my worries go up. But it has gotten easier, I don't stare at the monitor all night any more and I don't c heck on him constantly. I know at some point the monitor will have to go, but for now it works. I also worry about my girls, they can't tell me if this is hereditary.

 

[candice]

For us the nights are thé worst, i wake up so many times just to see if he is still breathing! Today he is ill, being sick but i dont think it is a bug...he keeps saying he has a funny feeling, it would fit in with his 4 weekly pattern although thanks to keppra we havent been having proper migrane/seizure problems but 4 weeks ago he woke up with a funny feeling and had to go back to bed for 2 hours then all was fine..today he is being sick..he was always vomiting with his migranes and seizures...maybe we need to change the dose, several people have told me that "he probably has a bug" or "it will pass in 24 hours" but i am sure it is epilepsy/migrane related...:-(

 

[momofthree]

I am sorry Candice, you know your child best, keep a close eye on him. My husband and I can also tell when it is seizure related and other peoples suggestions, while well meaning, are well, meaningless. My son also gets "funny feelings" always in his feet, he also screams, and it is a strange scream, not normal, that is how we know it is seizure activity and not something else. Make sure he is rested and well hydrated, maybe it is a movie and popcorn kinda day.

 

[candice]

This is the hardest thing i have ever been through, i have been reading alot and the medicine that he is on has such a good success rate but on the other hand the type of epilepsy my son has is apparantly not very treatable with drugs...everytime i feel a little bit hopeful it gets taken away by some bad news or statistics. The difference with my son is that we have a finding...he has a "shadow" but i still dont understand the prognosis, 2 clinics have told us to operate, i am sooo scared and cant even think about the risks, he is only 9.

 

[momofthree]

I thought that BFE was a childhood epilepsy, how come they would recommend surgery for something he may outgrow? My son's epilepsy is too deep in his brain, unfortunately surgery is not an option for us, but I would think that things have to be very bad in order to contemplate brain surgery on your child. We are lucky that Keppra works so well. Maybe because your son has a "shadow", that is why surgery is the correct course, my son's MRI was clear. His epilepsy is focal in that it starts in one spot but he generalizes almost instantly so they can't tell me where it starts, it is also too deep to see as well. The only way they could give us more detail is if we had an internal monitor placed in his brain, which we are not doing nor have a need to at the moment.

 

[candice]

So my son has had several seizures this morning, he is in bed now sleeping :-( everything was going so well with the keppra but now this (and 4 weeks age he had one too) the doctor thinks my son may be growing and needs more drugs so weve given him a bit more in the evening!
My son has had 2 mri scans with a shadow on the left side it would need a lot of further tests but they think itis operable and that he wont grow out of it :-( its all so depressing!

 

[momofthree]

Candice, my son is 8 and we have had to increase his Keppra lots of times because of breakthrough seizures. What I have found is that there are sometimes warning signs, maybe a tremor here or there or an odd feeling. If you catch those you maybe able to raise the levels before a grand mal. We also monitor the levels via blood work every 6-8 weeks to see where it is at, and are kind of learning where he needs to be. For example a Keppra level of 8 was fine if all things were perfect, but he got sick. When he was sick the level of 8 did not keep him seizure free. We upped the dose, he is now at a 13 and so far so good. The only issue is that they grow so quickly and such a quick metabolism that is is not always easy to keep up. Good luck and I hope your boy is feeling better soon!

 

[candice]

Hi again!! Yesterday was awful, its been a long time since he was so bad, seizures,headaches and being sick! I will talk to my doctor about monitoring blood, that maybe a help, thanks for the advice!!