Start Kindergarten for newly diagnosed Benign Rolandic Epilepsy?

Brenda - posted on 07/25/2012

Lauren,
Has he had a 48 hour EEg yet? If not that should be done right away and you can do it at home.

Ella had two tonic clonic ( I am prettty sure that is what they were but not 100%) seizures. She also had what we called 'sparkly limbs' in the middle of the night. They started about two mos prior to the first seizure and continued, even after meds for about a year then they decreased significantly after we started some alternative therapies (supplements and diet changes). The 'sparklys' (pins and needles feeling in a arm or leg or hand or foot) were probably very very tiny seizures happening very very deep in the brain. We did have one incident of sparkly while hooked up to EEG but it did not register as anything, but neuro still thought they were seizures just too small/deep to capture.

Our seizures were only at night- hence the diagnosis of BRE (3am, 6am) and the sparklys were also only at night. When we medicated we only gave one dose per day right before sleep. Our bedtime and routine are very strict and we don't let her get overtired, which I think really helps.

good luck,
Brenda

Lauren - posted on 07/24/2012

Hi,

Thanks for your replies. It really helps to hear from other Moms who are going through this. Cooper's seizures are at several a week now. They consist of him telling me he feels sick and then his mouth/chin hurt or feel pinchy. It lasts a few seconds and he is back to normal. There is no outward twitching or signs of anything. I'm assuming they are seizures though, but am not 100% sure since the ones he had when he was diagnosed all happened in one day and were also focal to his mouth but his speech was slurred and he had a lot of drooling during those.

What kind of seizures has your child had and are they all at night? We are traveling right now and have a follow up with his pediatric neuro in August.

Thanks,
Lauren

Brenda - posted on 07/24/2012

Hi,
My daughter has BRE. She is turning 6 in August. She was diagnosed when she was almost 4. We did decide to medicate because her EEG's were very abnormal. She only had two seizures (one month apart, both in middle of night) before we medicated and has been seizure free for 2 yrs (we are weaning from meds right now). We did decide to hold her for a year. She will start K this year (right after she turns 6). Academically, she was more than ready. She was still napping last fall (due to the BRE, the medication or maybe just her!, we don't know) and I did not think she was ready for a 7 hour day. Also she was a tad bit emotionally immature at times (again possible side effect of med?) and that worried me. All and all it was a very good decision for us and I don't regret it.
http://benignrolandicepilepsy.wordpress.... - this is our BRE blog
Good luck....it is such a hard decision!
~Brenda

G - posted on 07/22/2012

Hi,
My daughter was diagnosed with benign rolandic epilepsy during her kindergarten year. Her seizures started to increase in duration and frequency and almost always happened during times of fatigue - early in the morning or bedtime. My daughter went through all the same tests you mentioned and our neurologist placed her on daily medication. She had a few seizures while adjusting to the medication but has been seizure free for 2years and is preparing to start 5th grade. She plays competitive sports, is in the gifted program, and participates in sleepovers. When she was younger we discussed ways to handle a seizure (or face shaking as we dubbed it) when with friends but her entire life is normal. We have always been consistent with an early bedtime - 8pm - which helps manage the seizures because fatigue can bring them on. If your child is developmentally ready to start kindergarten then start him. Benign rolandic epilepsy is an adjustment in your life but not an obstacle.
Good luck with your decision - whatever you decide.

Lauren - posted on 07/17/2012

Hi Cherish,

Thank you so much for your response! What you had to say makes total sense to me and after sitting down with my husband this morning we had pretty much come to the same conclusion. We don't want to hold him back in any way because of the epilepsy. I think I've just been in denial that he even has it because it is so new and he had not been showing any signs until recently.

I think he is ready for Kindergarten and so do his preschool teachers.

Thanks,
Lauren

Cherish - posted on 07/17/2012

Hi,
It is scary sending them to school when they have a medical condition.When my boys were Dx'd with type 1 diabetes I was so stressed that something would happen.My youngest also has developmental issues and type 1 diabetes,he can not speak,so he can not tell anyone if he is sick or low.
He also was diagnosed with temporal lobe epilepsy with secondary generalized tonic clonic seizures.He also has partial and absence seizures.Because of the abnormal EEG and the frequent epilform (sp?) discharges they put him on Lamictal.

Anyway...my point is,talk to the school,get a healthcare plan,ask neuro for a seizure action plan to give to the school.
It is hard to do but you can't let the epilepsy consume your life.It is something that unfortunately you all are going to have to "live with",yes it sucks but don't let "it" make decisions like that for you.
I know it is hard to believe but the school has probably dealt with all kinds of medical conditions and I can just about guarantee you that he is probably not the only one in kindergarten that has epilepsy.
If you don't want to send him because you think he is not ready then don't send him,but don't keep him at home because you are scared of the seizures.
If you do send him to school there is no reason you can not volunteer in his class room,that way you can establish relationships w/school personnel and be more comfortable with leaving him.You can also send him for a few months and if you are still not comfortable then there is no reason you can't take him out and wait another year.
Kids LOVE school,usually,and I bet he would do fine :)