findhervoice
Posts 7
|
Hi, In addition to being Selectively mute in social situations for the past 2 years, my 4 yr old daughter has experienced some peculiar activity while asleep. (Seizure or Parasomnia?) It started last Spring 08, she has had 5 seperate Seizure-like episodes during a sleeping state, where she props herself up while coughing, smacking lips (like chewing) & reflux gagging which is followed by vomiting. Her Eyes are open so she appears awake, although completely unresponsive, eyes deviated in a zoned out appearance, body limp but hands rigid.
What seems to set it apart from a typical seizure is the duration. (lasts for about 15 minutes), then she falls fast asleep, and has no recollection when she awakes. All episodes where more or less the same.
After some EEG's and a Brain MRI (Oct 08 at MCH) that presented itself clear, they said it was just benign PARASOMNIAS. Apparently these parasomnias are very common in young children which they usually grow out of around age 5, I'm told. Also, doctor believes it NOT to be related to her SM.
I have my concerns if it was truly a seizure vs. parasomnia, and more importantly is it somehow connected to her SM and the anxiety she has...(she also grinds her teeth excessively).
Anyone have any experience with this or advice?
Thanks !
findhervoice
|
yrodriguez
Posts 16
|
Hi,
My son began having seizures with one large event back in 2003. It also happened during his sleep. Because no one witnessed it, Neurologist just called it an event. One year later he began having the same but smaller epidodes. The seizures happen just when he is about to wake up. He will begin swallowing hard with a blank stare and then quickly seized. After 2 years, he was finally diagnosed with Petit Mal Focal seizures. He had a C-Scan done which found a small scarring area in the brain. While, your child has different symptoms. My son saw Dr. Resnick at MCH. My suggestion to you would be to start a notebook and document every event, with all symptoms described in detail as this helps the Neurologist figure out what part of the brain is being affected. I have read alot and I read this book callled "Seizures and Epilepsy in Childhood: A guide. Barnes and Noble carries it. It is has a red cover and the shadows of 3 children playing. I found it very educational and helpful. My son also has a Medial Alert bracelet which helps to organize his medical history quickly as I am the only one at home who knows his entire medical history. It organizes everything when I am not around specially for my parents. www.medicalert.com
I hope this helps,
--
Yamilet R
|
findhervoice
Posts 7
|
Hi miamirn, Thanks for your messages of hope! I saw your response from my other post under Selective Mutism/ School Shyness/ Speech Delay....
Well, we now know it's not a Parasomnia!! It has been an unfortunate turn of events for my daughter, now that she had the seizure on Sunday morning. The interesting part was that it started out as a 10 minute starring spell (eye deviation, zoned out appearance, vomiting, continuous swallowing, limp body, and basically un- responsive) which we have been experiencing for the past year, then suddenly turned into a seizure! It specifically effected only one side of her body, causing some uncontrollable jerking / twitching (eye, arm and leg). I'm so glad we called 911 because by the time they arrived her oxygen level was at 70%!!! (EMT said she was turning blueish) Very Scary situation to witness!Thank G for 911 who was Phenomenal! Anyone experienced same thing??
The pediatric staff in the Baptist hospital was Wonderful!! They really took very good care of my babygirl! Now we are awaiting the Nuerologists to review the new EEGs done over the last 48 hours. We still need to schedule a MRI at MCH asap, but I hope they will find some answer for what kind of seizure it was and where we go from here. It's alot to take in...And if I get on the internet and read about seizures, it just overwhelms me. Better I wait to find out some specifics before I do my research.
Good new is, Now she's home! Only now we have to continue with the TRILEPTAL, since they administered it in the hospital this morning. But, after reading all of the WARNINGS and RISKS/ SIDE EFFECTS I have to admit, It scares me to death!! I am hoping and praying the Benefits will outweigh the Risks of having this seizure again!!
Trying to remain calm and strong for her,
Any feedback or advise is always welcome.
Thanks!
findhervoice
miamirn wrote:
Thanks,
I am sorry, I did not know you had replied to my orginal message. I hope the doctor's find the cause quickly. You should contact the Epilepsy Foundation, they also can provide support. You should research absent seizures. Also, once school starts, you need to make sure that the school is aware and that the staff has the proper trainining to handle an event. The Epilepsy Foundation can come out and provide training. Parent to Parent of Miami has monthly support group meetings. Call the office and ask to receive the flyer for the dates. Also, if you an get the book I mentioned before, great for understanding types of seizures.
Take care,
--
edited by yrodriguez on 6/23/2009
|