Epilepsy Foundation


Epilepsy in WNY

People living in western NY with Epilepsy

Members: 6
Latest Activity: Apr 25, 2014

Discussion Forum

souding board

Started by robyn l vogl Aug 12, 2010. 0 Replies

This group is for anyone in wny who needs a sounding board and is looking for support and has not found it. I have been seizure free since 93 but prior have had a long history with seizures and…Continue

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Comment by Danielle Lynn Isaacs on April 25, 2014 at 8:43am

Hey hey- happy friday, anyone around??? :)

Comment by Danielle Lynn Isaacs on April 22, 2014 at 9:59am

Goodmorning everyone- I am in downtown buffalo- I am 37yrs old- found out in 2004 I have petite mal seizures, had rt lobectomy in 2006, I have a 3yr old little boy and a 6 month old little girl- still have seizures and am on tegretrol and lamictal at the moment :) any questions just ask!!!!

Comment by tracy allen turck on May 21, 2011 at 7:23am
christine, there is a group calledepilepsybrainstorms.org it actually is a support group that meets every wed & sat night from 7-10 pm EST. please come join us and you will gather a lot of information and can get alot of your questions answered.
Comment by Christine on May 20, 2011 at 11:25pm
On May 6th, 2011 my 6 year old son was diagnosed with Absence seizures. I am completely caught of guard by this! My husband and I always thought that he was just ignoring us or that it was part of his ADHD(diagnosed at age 5).

On April 3, 2011 Nicky was at McDonalds with his grandparents while my husband and I attended a birthday party for a family member. When we came home, they arrived shortly after and informed us that Nicky fell and hit his head while playing on the playground. He had a bump the size of a golf ball on the top of his head, but seemed fine. About an hour later he was complaining that it was throbbing, getting very confused and falling asleep. I called his Pediatrician and she said to take him to Children's hospital. At the ER they had him do a few balancing tests, eye chart and had him drink a pop to make sure he could keep it down. They sent us home with a diagnoses of a mild concussion.

The following day we went to the Pediatrician for a follow up and his balance was worse and he was having trouble focusing. She recommened we take him to a Neurologist. April 5th, we went to Dent Neurologic Institute and the Dr. ordered an MRI and a simple EEG. A few days later the Dr. called and wanted to see us right away. He said the MRI was normal but the EEG was abnormal. The Dr. said that during the hyperventalating part, Nicky had a petit mal seizure. I was siiting right there and didn't notice anything! While in his office, he asked Nicky to blow on a tissue to try to provoke a seizure and it worked. If the Dr. hadn't pointed it out, I wouldn't have even noticed a change. Before giving putting Nicky on a medication, he wanted to do a 24 hr. EEG to see how often they were occuring and the duration. On May 6th we got the results. The Dr. said that Nicky didn't have an actual seizure during the 24 hrs., but there was ALOT of activity. He said that he could guarantee that a longer EEG would show actual seizures. At this point he gave us a script for Lamotrigine 5mg. Nickk takes 1 pill twice/day for 2 weeks and then we up it to 2 pills twice/day for another 2 weeks before we see the Neurologist again.

At this point we are kind of shell shocked by this news! There are so many questions and concerns going through my head constantly! The biggest issue is that we still can't tell when he is having a seizure. They happen so fast and he doesn't have any eye rolling or twitching that we have noticed. How am I suppossed to keep track of them if I'm not sure when he is having one? I'm greatful that he isn't having more severe seizures but I also feel like this is little more difficult to deal with because they are so hard to recognize and he isn't aware of them to let us know either. I'm so frustrated and scared. I would love to speak with other parents that are going through this.
Comment by tracy allen turck on August 17, 2010 at 4:38pm
hi robyn, pulaski is about 50 miles north of syracuse and about 35miles east of lake ontario
Comment by robyn l vogl on August 17, 2010 at 3:20pm
HI ! i am originally from Long Island but my husband is from the buffalo area. Where is Pulaski NY? Talk soon.
Comment by tracy allen turck on August 13, 2010 at 4:45pm
hey robyn how are you I was born and raised in pulaski ny and I now live in Tenn and I would like to be your friend

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