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rayraysmom

BRE

My 9-year-old son was diagnosed with BRE last week. He started having twitches in his face 4 months ago and only happend while he was just waking up but still groggy and tired. Last week he had a full grand mal seizure that started with the twitching in his face but spread full body. We had an EEG done on him and were told it came back abnormal and that he had BRE. We are not able to see a pediatrician neurologist until 2 months from now. Anyhow, I am told that these usually occur during sleep or upon awakening. I have not had a good nights sleep since last week. I just lay awake all night and watch him. I sleep on and off all night and at every twitch I am scared. How does anyone else cope with this and do they get much sleep or any suggestions as to what anyone else does for peace of mind during the night???  rayray's mom

Comments

Re: BRE

My 10 year old son sleeps in bewteen my wife and I since he was diagnosed. It will be two years next March that he had his first seizure. We found him at 10:30 pm laying in the hallway just outside his bedroom. When he came to and was able to talk again he told us he thought he was dieing. He said he could hear and see us but could not talk. That tore me up inside to know he thought that. We are getting a air mattress for him so he can move out of our bed. He is very well controlled with his meds but I still cannot let him sleep without us being close by. We give him coromega fish oil, aloe vera juice, magnesium, and vitamin b complex. He is on a very low does of keppra. 250 mg in am and 500 mg in pm.

My email is wyboemail@yahoo.com if you have any questions.

Curt

Re: BRE

My husband and I have had our son in between us,too, for the last week.  I am scared to let him sleep by himself. I think he is scared,too. I am sure it will be a looong time before he sleeps alone. I would feel awful if something happened during the night and I was not able to catch it. Does the medication your son is on work for him? I mean, has he had very many seizures since he has been on meds?

BRE

My son started medication just over 2 months ago, and is on Keppra and was taking liquid 300 ml twice a day, but the liquid wasn't convienent for us so we changed to pill but they only come in 250 ml, he started taking them last week and since then he has had one big seizure and a quick small one that I know of. Like I said, he has them within an hour of sleeping and so i make sure that I am with him while he goes to sleep. Funny because I just got him out of my bed and now he has been back in my bed because this. I am going to get a baby monitor to have in his room, I sleep very light and hear everything. So I have an appointment next week and I think he will change his medication or dosage.
My question is for the person whose child went to the emergency room, did they do any testing to see if he had BRE or did they talk to a neurologist and he prescribed a perscription? Has your child had another seizure since then? For everyone else is there any rhyme or reason to your child's seizures are you seeing any patterns that may trigger them? tired, stess etc...?? I am just trying to figure out a possible trigger.

Thanks for your input and sharing your stories, this has been very comforting to me knowing my concerns aren't all in my head and that i am not alone.
Amy

Re: BRE

We had just gotten our son out of our bed and that same week he has his first seizure. I think stress (being in his own bed scary) and being over tired has a huge part of seizure activity. He always was scared to sleep alone and he told us after the first seizure that he would always get these tingling in his lips after he fell asleep and this time it did not go a way and he felt funny so he tried to get to our bedroom and then fell in the hallway and started to have the seizure where we found him.

Re: BRE

Keppra has controlled his seziures very well. He is on a very low dose of 250 mg in the am and 500 mg in the pm. He was taking 250 mg in the pm as well but started having seizures again so the Dr. figured with his growing the 250 mg at night was not going to be enough. Everything has been fine since. We give him coromega fish oil along with other supplements that I thinks helps as well with the seizure control and the side effects of the keppra.

wyboemail@yahoo.com

curt

My son too

Hello my son was diagnosed with BRE right before Christmas and we had the option of putting him on medication. His father and I decided to wait it out to see how often they happen. Well he had 2 more in a span of 4 months, I seem to be the one who always witnesses it (father and I do not live in the same home). My son's seizures always happen within the first hour of sleep. My son happens to fall asleep most nights on the couch where I am so that is how I became aware of it. In fact I thought he was just dreaming until I noticed the drool and slurring words, that is when we had an EEG and got the diagnosis. He is on Keppra up to 250 ml twice a day but I don't think this the right dose because the other night he had a grand mal and that scared me to death, I reamained calm and made sure he was safe. I called the Dr.. of course he is on vacation, but we have a follow up next week. I just don't want my son to ever have to have another one in his life, the gasping for breathe is what gets to me. I want to know what may trigger it, tired, sleep schedule off, food? or is it just nature and the make up of my son??
Glad to hear that I am not alone.. thanks for your support

my email is aclayton@gloucester.k12.ma.us if you want to chat.

Amy

Re: My son too

Yes, it is scary. We were in the car on our way to our vacation when he had the big one. It is awful to see. I have been praying for my son not to have another one. At least this time I will know what to do. I was clueless the last time.  He hasnt seen a neuro yet but one talked over the phone to the pediatrician at the emergency and started him on Trileptal. Now I am scared of the long term side effects of the medication,too. I hope he will grow out of it. I met a young woman today who said she had epilepsy but grew out of it at the age of 12. There is hope!

Re: BRE

 rayray:

 I am currently in the process of determining if my 9 year old son has BRE. He had his first problem while at his dad's house on July 11 and the next seizure, which I and my 12 year old son fully witnessed, on July 17. At first I thought he got over heated, but after we got home, took him to his pediatrician and talked to a few family members, I believe he has BRE. He has an EEG and MRI scheduled for next Wed. As his mother, I am obviously worried, but after talking to my former sister-in law and doing some research, I am no longer worried as much as I was. This is what I found out:

                        1. It can be hereditary. My ex-husband's niece had BRE as a child, took medication for approx. 18 months, and has seemed to outgrow it. I think she is now 22 and not had another problem since. However, there is no known cause for it.

                         2. It is often found in boys more than girls

                         3. Children with the illness do not typically have problems in school, but some have difficulty with reading/ literature or spatial skills. My son has had difficulty with reading and received help. I wish I would have known then what I know now. It would have made it easier knowing what the specific problem was.

                         4. It often occurs when the child is sleeping; ie going to or waking up from. In both cases, my son was waking up.

                          5. It typically affects the one side of the body, usually starting in the face. I'm sure I don't have to tell you how scary it was to see my son go through what he did. a friend of mine, with whom we were vacationing at the time of the episode, thought he was having a stroke. Fortunately, he didn't have a grand mal, I was freaked out enough by what I saw without that happening.

                         6. It is often brought on by over exhaustion or over-stimulation. In both cases, my son was overly tired. I also know that my former sister-in law said that her daughter experienced the same thing, and to be cautious, they always made sure she got plenty of rest. I know you said you were nervous about letting him sleep alone, but maybe if you make sure he does over exert himself or takes an afternoon nap, with you close by, you will be more comfortable with placing him in his own bed in the evening because the likelihood he will have a seizure will not be as great.

                        7. Seizures are often accompanied by drooling and the inability to talk. When I learned this it made me wonder how long this problem has/had been occuring. My son drools alot while he sleeps; I just thought it was because he slept with his mouth open.

I'm not sure how much of this information you already know. I am obviously new at this, but one thing I do know, is that when I feel more educated about an issue, I feel I am much more capable of handling it. My prayers are with you. Keep me in yours as well; we'll find out for sure next Wed

Amazing you described my son

Wow you have described my son to a T... i totally see him having them more when he is tired and stressed out, and he too need to have his meds upped because he had a grand mal.. something i hope no parent EVER has to experience, I was all alone and it was later in the evening so I couldn't call any one to process what had happened, needless to say I didn't sleep very well that night. I appreciate all the info and experiences that people have posted because now i don't feel so alone. And I agree being educated helps understand what is going on and to be proactive instead of reactive and freaking out, so thank you all.
Amy

Re: BRE

Thanks for the info. Some, I already knew, but you helped out alot. His EEG came back abnormal which they tell me just means that he has epilepsy. The neuro diagnosted him over the phone with my son's pediatricain and we cant see the neuro until another month from now. I was nervous about that at first,but after these responses and reading up on BRE I dont feel too bad now. Good luck with your son and all the testing. God Bless.

Re: BRE

My daughter was diagnosed with bre one year ago.  She had what I thought was one seizure but later learned it was a partial that generalized into a grand mal.  I too didn't sleep for months after the emergency visit and testing and diagnosis.  It was a year and a month until the next activity showed up.  Bre can be like that....lots of seizure activity or very sparadic.  Yesterday my daughter had three simple partial seizures.  Now we are back to the sleepless nights for me, and for her, fear of going to sleep.  I feel for all of you and want you to know that every night since the first seizure my daughter and I pray  for her and all of the children that have epilepsy. p.s. She is back to sleeping with me and my husband again.

Re: BRE

Hi,

This is my first time posting. I found all your comments very helpful. My daughter, who is almost 8, was diagnosed with BRE two years ago. We have managed her seizures pretty well with osteopathic treatments and amino acid supplements. But, just recently, her seizure activity has increased. Twice this week, she had two seizures while falling asleep. This was scary enough, then she had a grand mal too. We saw our neurologist today and she's fine letting us ride it out but I think I'm at the end of my coping ability. It's just so hard to watch her go through this. She's recommended Keppra if we decide to take the medication route, which we are seriously considering. Are there others out there that have made this decision and have had success? We also found that stress, tiredness and overstimulation bring on the seizures. She's in bed every night at 7:00 and even slipping to 8:00 will bring one on.

Thanks so much.

Re: BRE

Thank you all for your comments and insight.  Our daughter Sarah was diagnosed with BRE last week, and we are struggling to learn all we can since.  She was rushed to emergency after a seizure, when she could not move her left arm or leg.  The EEG confirmed BRE, and the pediatric neurologists recommended Trileptal immediately, due to the temporary paralysis.  From all you have shared, our first priority is to refine our bedtime schedule, as well as set a daily schedule and try to reduce stress and anxiety.  She starts kindergarten in two weeks, so we are concerned that this will increase her anxiety, and risk further seizures.  Due to the hereditary nature of BRE, we are also worried about our 2 year old son.  Is testing recommended for siblings before they show signs of seizures?  Any information on this would be appreciated.

Thanks again.  Wishing you all strength and peace of mind!