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Benign Rolandic Epilepsy
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tiddilywink posted:
My 10 year old son was just diagnosed after 3 seizures in a matter of 48hrs. The EEG showed it was indeed BRE. I am terrified I have never seen anyone have a seizure before and I thought he was dying. I can't sleep because I am constantly watching and waiting for him to have another one. How are we supposed to get back to some kind of "normal"? Does anyone have any tips on what to do? I plan on co-sleeping with him for at least a few months but I know he will eventually want his own bed and room back. I just am scared of him sleeping by himself. How will I know if he has a seizure. He is scared and so am I. Please help.
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dancer86442 responded:
Hello tiddilywink,

It is scary, at first. But, Knowlefge is Power & a great way to banish your Fears. So, my First piece of Advice is to Learn as much & More about Epilepsy. We have Lots of Info in our Resources. Also, check out Popular Discussions & clik on Weblinks for Epilepsy for pertinent Sites.links of Interest. But, I highly recommend epilepsyclassroom.com They have info, plus a seizure tracker for teachers to help you.

Next: Start a Journal! Info on what to Include is under Tips. Clik 'See All'

You can put your son back in his room. What I suggest, for now, is to buy a baby monitor w/ sound/Video! New technology has come up w/ products, that although Quite expensive, can Help, too. A Smart Watch is the Latest Development. But, there are, also, Sleep Mats, available. Please, contact National Seizure Disorders Foundation about the Sleep Mats. Tonya has just recently joined forces w/ the makers, to help parents acquire these sleep mats for little to no cost. Plus, she has excellent Resources for helping you get a Trained Seizure Alert Service Dog. For Less than what other Organizations charge.

I also highly recommend you visit Amazon.com for a List of Books/Authors about Epilepsy. Books Written for All Ages. Suggestion: Copy Titles/Authors & visit your Local Library. Request to talk w/ the Research Librarian! He/she will help you find any books you are interested in. It is Very Important for your Son & family to learn, as well as you!

Have you learned Proper Seizure First Aide, yet. Taught Others' that will need to now? It's real simple. 1. Start timing! 2.Loosen any constrictive clothing. 3.Clear all objects from around him that could prove harmful. 4 Turn him on his side to prevent choking on excess fluids or possible Vomit. 5 Lay his head on your lap or something soft. Talk calmly thru out the seizure & Wait for seizure to end. Keep in Mind, he does Not feel the seizure. The worst part about seizure activity is the Aftermath. Confusion, excessive tiredness, possible chewed tongue & excessive soreness in his muscles. Bitten tongue?? Warm salt water solution. Rinse after every meal. Excessive soreness? Warm Epsom Salt bath. Supervised! He should never be left alone in tub of water. You can sit outside the bathroom or place a baby monitor w/ sound in there. (Visit yard sales or thrift stores) Showers should be Mandatory in between seizures.

Most Important: Your Child is Scared becuz You are. So, Please, start treating him 'normal' again. Over protectiveness is Not Good! Your child is still 'normal' & should be allowed to behave & as active as any other child. Yes, you may need a few ground rules, but, these are just Precautionary, Safety rules.

Keep talking to us, Mom. You need Support & we will be here for You! Hugs to you & your Son!

P.S. Has the DRS recommended any Meds yet? Please note Diet Alternative: Ketogenic Diet in our Resources & discuss That w/ his DR also.

Love Candi
 
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saxofone1 replied to dancer86442's response:
Hi tiddilywink,

Welcome to the family. I had my 1st seizure in '75. I do hope you find some needed support/guidance here with us.

Candi, as usual, has offered you a good start.

Is there an Epilepsy Foundation of America in your area? www.efa.org is the national web address. Think about contacting them for some reading material in addition to Candi's suggestions.

Are there any questions that your son has that you could ask for him? We are here for him too. Kids are willing to learn if they understand what is going on. Explain to him that he is not a 'freak'. He has as much capability as the student he sits next to. If not more.

Is he having auras(warning signs) prior to his seizures? Talk with him about those cause that could also be of help to all of you if he can alert you before having one. Taste, change of vision, butterflies in the stomach, headaches are among the common sensations.

Your calmness about his seizures will help him along the way. Do keep in touch with us. Hugs to the young man.

angie
 
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jenbayly17 replied to saxofone1's response:
Tiddilywink,
I wanted to reassure you of a couple things, you have come to a good resource for help and support. Angie and Candi both helped me with a recent med change. The other thing is that because this is new to your son and to you it is scary. I was diagnosed with epilepsy at age 12. It's a very different time in his life where he is about to hit the junior high changes. Be positive with him that you are there and that he has support. That has to be the main thing that got me through my diagnosis and junior high days that came together. My mom was and still is my rock in life especially for my epilepsy.
 
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saxofone1 replied to jenbayly17's response:
Hi Jen,

Thanks for your vote of confidence. Hope everything is on the positive side for you these days.

Tiddilywink, I hope all is moving along in a positive direction for the young man. I can also say that jr high is a tough time. My first seizure was shortly before I turned 14. Suddenly the people who hung out at my house after school avoided me. It definitely hurt because I had done nothing wrong to them. I was ready to explain to them all but they all scatterd once they saw me have a seizure. This might be a time to help him understand friends vs aquaintances. His friends will stay by his side and offer him support regardless.

Please let him know that we are his friends too. We are open to any questions he might ask you to ask us.

angie


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