New with some questions on BRE

[chnky]

I am new and having trouble sorting through all the information out there. Our daughter was just diagnosed with BRE. She is 7 and had her 1st seizure on 8/17/09 and then another on 9/6. We saw a Neuro in-between seizures and he suspected BRE from descriptions of her generalized seizure and the EEG results. Both seizures happened about 20-30 minutes after going to sleep and involved her whole body. We went to ER both times and she checked out good once there except a headache and sick to her stomach. We go for a MRI today. She also had a good CT scan. She has been sleeping between us since the 1st seizure. After the 2nd seizure the Neuro did diagnose her with BRE. I am afraid for her to be alone in bed. We have Diastat, but I'm scared about administering that also if I were alone with her. I am also worried about her not surviving a seizure. How often does that happen? Dr's seem to agree that is it scary, but that is it. We bought a baby monitor that has night vision so we can at least get her to bed and still see her.That is how we caught the 2nd one. Should we invest in a bed monitor? We started Keppra yesterday and hoping that controls them. Just trying to determine how likely it is she will only have 2 seizures or if we have ahead of us. She is now scared when she goes to sleep that she is going to have a seizure. We all need some help to calm us down! I've been reading some about diet, sugar, etc, but her Neuro says the strict diet is for children who do not respond to meds. Just stay with a healty diet.I'm open to advise from someone else who has been through BRE.

 

[RobinN]

chnky - Welcome
Sorry you are dealing with this. Hard to calm down, I know. Yet you will create an additional trigger in your daughter if she is continually scared to go to sleep every night. Thoughts sometimes become things... so I have learned.

I do not know anything about BRE, since my daughters seizures began as tonic clonic at the age of 14.

If I knew then what I know now.. I would never have put my daughter on drugs. I would have considered nutritional changes from the get-go. Since that is what my instincts were telling me. I had a doctor tell me it couldn't be. So I relied on conventional medicine and it threw our life into H***. Others disagree with me, however we have seen far greater results with the nutritional changes than with any thing suggested by Rebecca's neurologist. Perhaps it is because we caught it early on, and she wasn't on meds for years.

We also have done neurofeedback to help stabilize the brain during this challenging time, and it was also helpful in many ways.

You also need to consider at the age of 7 that hormones are beginning to change. This is a big trigger for many females (and some males). Journaling is a great way to figure out what the triggers are, and if there are food sensitivities, or if the intestinal tract isn't functioning as it was intended to.

Stay with us, I am sure you will learn a lot.
There are some great night time music CD's which would be very comforting to listen to if she is scared.

 

[Loudmouth]

My daughter was diagnosed with E at the age of 9. She is now 11. She is not on any medication (Neuro wanted to put her on ethosuxamide, but the list of side effects was so horrendous I refused). We have tried to raise her seizure threshold with diet, and so far ar having quite a bit of success. We are on a gluten-free diet and have eliminated all artificial sweeteners from her diet. She has gone from having 3-5 absence seizures a week to only 2 since the start of June. If she is 7, you will find that SHE will cope with the seizures better if you act like it's just a 'little problem'. I also have Epilepsy, and I have decided to treat my daughter as normal as possible, as the only problem, as I put it to her is 'a little faulty wiring' that goes wrong sometimes. She goes to the park with her friends, and does all the things anyone else her age does. Doesan't mean I'M not permanantly petrified, but if she doesn't see that, then she doesn't feel any different to her friends. I was terrible at first when she started having seizures ( she has had 5 TC seizures in the past) I was staying awake all night to make sure she was ok, but it only left me too tired to look after her during the day. And she was gettingh fed up with it, telling me she didn't need me looking over her shoulder all the time, she wasn't a baby. The monitors for the bed are sooooo sensitive, you wouldn't get ANY sleep...hers when I used it was going off when she turned over in bed. I soon gave up on that one!

 

[chnky]

Thank you for the information. I'm very interested in the altering my daughter's diet. She has taken Miralax powder for a long time now for constipation. She never drank a lot of soft drinks, but is definitely heavy on the carbs, cheese, and only likes chicken. She does not like meat or eggs. I'm trying to get protein in every meal, but if there were somewhere I could get meal/snack suggestions that would help so much. I would like to get her to a Nutritionist, but it really needs to be one that has knowledge of Nutrition links to seizures. Any ideas? I am in the Cincinnati, OH area. Our daughter's Dr. would not even include a blood sugar count in her baseline blood work (prior to starting on Keppra), he just says a good Nutritional diet. I'm also struggeling with the right amount of activity for her. I think a change in sleep schedule is a trigger for her. I'm trying to limit TV time, and have some down time prior to sleep. We are also trying soothing music at night. She keeps saying she thinks she is going to have a seizure so I know she is picking up on my nerves and I have to work on that.....but I AM so nervous. Trying to do the right thing, but getting overwhelmed with info. Thank you and any additional help you can send, the better. Not sure if I'm posting/replying correctly, but hope this makes it to you.

 

[Bernard]

Hi chnky, welcome to the forum. :hello:

Check this out re: bre : http://www.coping-with-epilepsy.com/forums/f22/first-gene-discovered-most-common-form-epilepsy-5679/