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New and Confused

Thu, 05/11/2006 - 20:48
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: New and Confused

Submitted by ralphlake on Fri, 2006-05-12 - 05:12
Your experiences sound frightening and I hope they are resolved for you soon. My problems as an adult (58) have a theme in common with your son's, though I caution you not to take my remarks as having diagnostic value. I have a pacemaker (as of May 2005) after my heart stopped following a series of near fainting spells. In January of this year I had very similar "spells" though now with a pacemaker. In 96 I had one classic simple partial seizure like event (there is no confirmation to date). Adding this up, there would seem to be only two broad scenarios that make sense (1) a cardiac event driving a brain event (2) a brain event driving a cardiac one. The cardiologist wasn't aware of the 96 episode (and of course the more recent ones came after the installation of the pacemaker) so for him it is obviously (1). My GP things that I have temporal lobe epilespy but nothing appeared abnormal on the CT scan nor on the EEG but he hasn't speculated that it is actually (2) I write this to tell you that it is not easy to tell how seizures arise and what is driving what. Keep both your cardiologist and your neurologist informed of changes (has your son worn a holter monitor?) and sooner or later they will sort it out. Good luck Ralph

Re: New and Confused

Submitted by txrhb1 on Sun, 2006-05-14 - 22:32
I sure hope you are able to get some definitive answers soon. It is so hard and frustrating to watch our children suffer, and feel so helpless. You may want to consider trying to get your son in to see an epileptologist (a neuro who specializes in epilepsy), for more testing. This link, http://www.epilepsy.com/dr_redirect.html will help you look up doctors in your area who belong to the American Epilepsy Society. I wish you the best of luck, and please keep us posted ! ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: New and Confused

Submitted by rayjay on Mon, 2006-05-15 - 22:38
Thank you all so much for the advice. This has by far been the best site I have come across. Lots of info!

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