I think Noah has epilepsy

jcc64 wrote: Hey guys
Been busy at work. Just wanted to ask if anyone out there has any experience with epilepsy? More specifically- benign rolandic epilepsy. My almost 10 yr old has had 3 separate "events", that we've come to believe are actually seizures that occur exclusively while he is deeply asleep. He usually wakes his brother up with strange, gurgling, choking noises, after which older son will run into my bedroom hysterically telling me that something's wrong with Noah. I arrive in his room to find his eyes rolled back in his head, his face contorted, and excessive saliva all over the place. Dh and I scream in his face to wake him up- the first time it happened I actually threw him in the shower, mistakenly believing he was sleeping so deeply that he stopped breathing. I brought him to the dr, who basically dismissed it as a harmless event. But now, after the 3rd episode, I felt compelled to investigate further. I discovered that there are some forms of epilepsy that are benign and occur only during sleep, come on during the school years, to be outgrown by adolescence. They can occur in perfectly healthy children, such as Noah, and have no effect on their long term health and well being. Thank God!
Anyway, I am certain that he has bengin rolandic epilepsy, which my pediatrician brother agrees with. I am awaiting a visit with a pediatric neurologist, which of course isn't for another 2 months.
Anyone ever heard of this?

jcc64 replied: Oops, just realized that I posted this in the wrong forum. I only ever launch from the "Today's topics" link- sorry. I don't know how to move posts- mods- feel free to put it where it belongs.

coasterqueen replied: ((HUGS)) Jeanne. My aunt had petite malls where she would just zone out and stare off in space, twiddling her fingers. She wouldn't remember anything that went on during an episode. Sounds much different from what Noah is going through.

I hope you find some more answers soon and keep on those doctors. My p&pt's are with you all.

amynicole21 replied: God, how scary. I'm sorry, but I really don't know anything about it. I hope you can get some answers.

moped replied: Yes, my neice has that exact kind of epilepsy - she was recently diagnosed after having a spell in Florida on holidays - the specialists say chances are she will outgrow it as most do with this type..........PM if you like

moped replied: I would also like to add that the neurologist did say it happens in her sleep because they did a sleep test on her - made her stay awake for like hours and hours and then hooked her up to a machine that monitored her and did and does have them in her sleep - it is very scary I know, but 99.9% of the time they do come out of it and don't even realize it happened................I hope this helps - my sister could giv eyou more info - but I am sure your brother is quite familiar also.

sunshine girls replied: I've never heard of this, but I hope you get some answers

Emeraldsmom replied: I am so sorry to hear this. I don't have any advice on this but I just wanted to say that Noah will be in my thoughts and prayers.

ediep replied: OH NO, how scary!!! I don't know anything about it, but you and Noah are on my thoughts! Hope you find some answers soon

A&A'smommy replied: WOW hun I never heard of that, I'm glad to hear that it wont effect his health!!! I will keep you guys in my thoughts and prayers!!!

kit_kats_mom replied: That would totally freak me out if one of my girls had a spell like that. It's great that you have a ped in the family though who can give you good advice and calm your fears. Let us know what the specialist says when you get there.

I'd love to type more but someone...ok, 2 someone's (L & K) are being super demanding. sorry.
Hugs

C

Maddie&EthansMom replied: Jeanne I hope you get some answers and treatment for Noah at his next appt. You must be terrified. I have no experience with epilepsy personally, but did work for a neurologist for years who treated adults and patients with this disorder. What a relief to know it won't cause any brain damage and it can be treated. Let us know when you find out more. I'm sorry I couldn't be more help, but it sounds like you are getting some great information on your own. I'm glad your brother was able to help you diagnose.

gr33n3y3z replied: I'm sorry to hear that
I hope you get the answers that you need and find a treatment for him

Hugs

MissyKay2005 replied: I have not heard of it but I am very sorry he is going through this and hope you can find out for sure and get it under control. Hugs to you and your family

TLCDad replied: Noah, you and your family will be in my prayers. I am sure you will find some answers soon.

My2Beauties replied: Jeanne I can only offer as I don't know much about epilepsy, I know that Desiree had feibral (sp) seizures when she was younger, but I know those are in much younger children. I hope you find the answers you need. Keep us posted hon!

jcc64 replied: Thanks guys! Your love and support mean the world to me, as always!

mammag replied: Oh I can only imagine how frightened you must have been, especially the first time. I hope you get more info. I'm sure he'll be fine. Prayers and hugs.

julesmom replied: My 5yr old has epilepsy. He was recently dx. We thought he originally had ADHD, but it turns out it was just the location of the seizures affecting his behavior. Can you believe that!

He had febrile sz since he was 1. We had him tested at 1, but it was all negative. We had him retested last spring and it was positive now. They did 2 EEG tests. One a regular hr one and a 24hr one. My ds is having absence sz, where he stares off, and frontal lobe sz. Your frontal lobe controls your behaviour and that's what made him seem like he had ADHD. He has sz while he is sleeping too. He has sz all the time, but they were so deep in his brain, he only had grand mal sz a couple times. But, I know how scary they can be! Now we've gotten kinda used to it. DH and I used to yell at him while he sz, but the ped. said no to, just relax and make sure he doesn't get hurt. The ped. said we can't yell him out of it.

Well, that is how he was before he was put on medication. Now that he is medicated, he is a whole new kid! It's amazing. He is doing great. The ped. neuro thinks he'll outgrow it. He'll get another EEG in Nov. to make sure he is on the right dose of medication. If your pediatrician will, he can write the script and order the EEG. Then you can get it done and have the results for your appt. with the ped. neuro. That's what we did with our other 2. We had our 3 and 7yr old tested too to make sure they didn't have it also and they don't.

If you have any questions, I can try to help you out. Good luck.

CantWait replied: Just wanted to wish you the best in getting answers quickly. Good Luck with the testing. This sounds very scary. My prayers are going out to you.

DansMom replied: Jeanne, I don't know anything about epilepsy, but I can imagine the panic I would feel to find my child having those symptoms. I hope they can confirm your diagnosis or figure this out soon. Noah has no recollection of the experience? Let us know as soon as you find out---I can't believe you have to wait two months.

jcc64 replied: He actually does have a vague recollection of some parts of it, which is pretty amazing if you saw how "out of it" he is during the seizure. He has been able to recount some physical symptoms that are not readily discernable to us, (such as a weird sort of paralysis of the tongue) but were instrumental in leading us to the diagnosis.
It's definitely scary, but the knowledge that he will outgrow it with no lasting damage has certainly quieted a lot of my anxiety.
Thanks for all the support guys.