My son with BRE

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Hi, my 7 year old son has BRE. He has had 3 seizures. One a month ago and then two more within two days of eachother last week. His first two were tonic clonic's. 3rd one he was waking up and remembers. It only affected half of his body. His left side was seizing and his right side was stiff. Has this happened to anyone else? Just wanted to talk with someone who has a child with BRE out there.

Comments

Re: My son with BRE

Submitted by Christine1968 on Mon, 2007-01-08 - 20:16

My 10 year old son was diagnosed almost two years ago with BRE. We are currently not exactly sure if that is what he has...his is not a classic case. Anyway, I thought I would respond and hopefully help you in some way. His seizures started out as partial. He remembered them & only half of his body was affected. After having several of those, he had a tonic clonic. At that point his were always during sleep or upon waking. We put him on medication after the tonic clonic. He has had several more partials since then, but they are not as severe as the first few...those were usually the entire right side of his body. Now they are usually only in his face. They no longer just occur during sleep or upon waking though. Most often, they happen when he has been awake for a few hours. We are not sure why this is and are still working with his doctor to get better control. You didn't mention whether your son is taking any medication yet. After researching BRE when he was first diagnosed, we decided to try have him go without it. The information we found indicated that the majority of seizures would occur during sleep or upon waking and he would outgrow it after puberty. In our son's case the seizures started to get more frequent and more severe so that is why we decided to put him on medication. Good Luck!

Re: Re: My son with BRE

Submitted by jacksmom on Tue, 2007-01-09 - 09:24

Hi Christine, Thanks for replying! Our son is not on any medicine yet. What meds is your son on? We are still deciding on that. He hasn't had a seizure now for 10 days, which we are very grateful for. As you know it has been a scary time for all of us. I am just starting to feel "normal" again, without constant panic. We are taking him in for a second opinion at the end of the month. The EEG test came back with the doctor who read the test stating that it wasn't typical of BRE, but he still thought that is what it was. The ped. neurologist did think it was BRE, but it never hurts to have another neurologist look at it and make sure we know what we are dealing with. When your son first started having seizures, how many did he typically get? Were they sporatic (not a very good speller)? Thank you so much for responding. I felt like I was the only one on here with a child with BRE. I have talked with some other great moms who have helped me also just with the tension of it all, but its good to talk with someone who is dealing with the same type of epilepsy. Thanks again, Sheri (jacks mom)

Re: Re: Re: My son with BRE

Submitted by Christine1968 on Fri, 2007-01-12 - 22:21

Hi Sheri, My son took Trileptal for about a year and then switched to Lamictal for about another year. Now, he is taking both Carbatrol and Lamictal. Once we received the diagnosis of BRE, we were going to try to keep him off medication because at that time his seizures were all occurring during sleep or upon waking. Then his seizures started happening more and more frequently and were getting more severe so we decided to put him on medication. We haven't had the best of luck so far. I would try to avoid the medications if possible. The side effects are pretty undesirable and the doctors don't really tell you that (at least ours didn't). If the seizures start occurring more frequently and it is affecting his sleep making it difficult to function during the day, then obviously, you'll need to take that into consideration when making your decision. I would get as many opinions as you need to feel more comfortable. We have seen three different doctors with our son. We recently went to an epilepsy conference in our area and met another doctor we are considering getting an opinion from. When Gabe's seizures started, they were pretty sporadic. He had one in March of 2004, one in April of 2004, then nothing until August of 2004. That is when they started to increase in frequency and severity and he started the medication that September. Since that time, he has not gone three months without having a seizure. Sometimes he'll have a lot during a couple of weeks. Other times, he'll just have one or two and then nothing for 2-3 months. We aren't sure about it being BRE because of the number of seizures he's had (most people with BRE only have a few overall...he's had well over fifty now) and the fact that he's not responding all that well yet to any medication (most people with BRE respond to a low dose of almost any anti-seizure medication...obviously that's not the case with him). The last doctor we saw said that he didn't think it was BRE. Then he had a meeting with the other doctors at his hospital and said it probably was BRE. Basically, my husband and I went from knowing very little about epilepsy to learning way more than we ever wanted to! I agree, it helps to talk with someone who can relate to your situation in some way. I still get nervous when my phone rings during the day when Gabe is at school...don't know if that will change anytime soon! If you have any other questions at all, I'll be glad to give my input. Good Luck! Christine (Gabe's mom)