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New and Confused
Thu, 05/11/2006 - 20:48Topic: New to Epilepsy.com
Hello-My son who is now five started having episodes at 3 and a half. The first time it happened it was about 5:30 a.m. He woke me and asked for some milk. I gave him a drink and then laid down with him to make sure he went back to sleep for a little while. About 20 min later he started to wet the bed. I tried to wake him but all I saw was his eyes wide open and staring off to the left. I called to my husband and he tried to wake him. He then started to make a wretching sound like he was going to vomit. I ran to get a bucket and when I got halfway across the house, my husband yelled to call 911. We live a block from the fire dept thank goodness, they were there withing minutes. They could not wake him, however he did cry when they did a glucose stick. They put him into the ambulance and one paramedic was with him and I in the back. Before we left he asked the other paramedic to come back and have a fireman from the firetruck drive (Where we live a firetruck usually accompanies an ambulance on medical calls) I asked what was going on and he said that his heart rate was dropping. I looked at the monitor and his heart rate was 30. I didn't get to see the monitor anymore after that because they moved it from my view. The 1st paramedic told the second one "Everytime his heart rate drops he goes out on me" After we arrived at the hospital and had a series of tests, it was determined that he had had a seizure. By the way he also got sick and quit breathing three times in the ER. He finally came around about four hours later and was just fine. We had an eeg the next day that was normal. Since December of 04 he has had six of these episodes. The second one didnt happen for nine months and then two more three months after that and three more this past February. Pediatrician and Neuro thinks this may be a cardiac problem. Cardiac didnt think so at first, but since that time they have noticed that on ekgs and event monitors that he is missing a beat. I have also read alot about the Panayiotopoulos Syndrome (Benign Epilepsy) which seems to fit everything that has happened too. I am so confused. I don't whether to scratch my watch or wind my head! If anyone has any experiences like this the advice would be greatly appreciated. Thank you so much
Comments
Re: Re: New and Confused
Submitted by ekoorb on Sun, 2006-05-28 - 11:44
It is called Benigh Occipital Childhood Epilepsy or Panayiotopoloulos Syndrome. Your experience is soooo similiar to my daughters. Unfortunately, when having a seizure with this type of epilepsy, the seizures can last longer than other seizures. Make sure you ask your doctor about the suppository that you can give your daughter if the seizure goes more than 5 minutes. I can only imagine the terror you felt. Our daughter's lastest around 7 minutes where she stared off blank after coughing as if she was going to vomit and it felt like a lifetime. My epilepsy specialist told me these kind of seizures do not harm the brain. Also, on another positive note, this type has an excellent prognosis. Children diagnosed with this type are expected to outgrow it within a certain amount of years. Also, you mentioned you daugther is 6-- this type is more common in girls usually with an onset around 5 years old. Have you had tests done yet? MRI or EEGS? Please contact me with any questions. I would love to communicate with you on this.
Re: Re: Re: New and Confused
Submitted by colelu on Sun, 2006-05-28 - 21:22
We had a EEG, CT, MRI and 24 hour heart monitoring in JAN 2006 and each of the test came back normal. After her last seizure which occured late last week, the EEG did show abnormal activity.
Her doctor has started her on Trileptal (150 mg) twice a day. I'm so nervous about the side affects of the drug. However, I'm more concerned that the ped neurologist was unable to identify her particular issue. I'm will start looking for an epilogoist this week.
Is your daughter currently taking any meds? If so what? How has it worked for her? Have the seizures stopped?
Re: New and Confused
Submitted by colelu on Sun, 2006-05-28 - 00:25
My daughter is 6 and has had a similar experience, three times. In the middle of the night she will begin to cough, then vomit several times. After this she has a blank stare that last more than 30 minutes, does not reply and her body become limp . The first time this happened, we called the ambulance, they were able to put a oxygen mask on her, give her an IV and carry her down the stairs without her ever moving. The doctors did not know how to characterize it at first, but after the third occurence this past Thursday she was put on Trileptal. I will do some research on Benign Elipesy as you mentioned, to see if this fits my daughter.