New and Confused

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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 ekoorb on Wed, 2006-05-17 - 21:10

Yes, I have had a very similiar experience with my 5 year old daughter- not with the heartrate issue but with the nighttime seizure you described and she in fact has been diagnosed with Panayiotopoulos Syndrome. The first time she had a possible seizure, we did not see it. She had slept with my 8 year old that night, and he came in the room that morning and said she had urintated in his bed. She was very irritated, it was hard to wake her and we sat in the doctor's office for 2 and a half hours. She has no memory of the incident. My doctor thought it might be a migraine. He did not want to do any more. I pushed the issue and we did a 45 minute EEG. The EEG showed some slowing. I insisted on seeing a neurologist. He had us do a MRI (which showed the brain structure to be normal) and he did a second EEG where she actually fell asleep for 40 minutes (so did I!) and the EEG showed some spiking. The neurologist decided not to do anything else at that time. This all was back in October/November. Then, it was not until March that the one similiar to your son occurred. It was so frightening. She had snuck in our room that night. At around 4:00 a.m. she sat up coughing like she was going to throw up. I asked her if she was ok but she did not answer and her eyes were open. We could not get her to respond. We carried her to the toilet, she could not stand and then we started to freak out. I got in the shower with her thinking I could wake her up. THe shower was not working. We called 911 and an ambulance came. I would say the intiial part lasted at least 7 minutes. Then she became groggy and in a cocoon position. Her vitals were ok but we went to the hospital. We came home, she had a headache and then slept for a few hours. SHe woke up feeling better and had no memory of this. Unfortunately at this time, we were seeing a pompous neurologist. HE barely helped us and told us to medicate her on Topomax. We were so confused and scared. Luckily during that time we were able to get into one of the best epilepsy groups in the area- specializing only in epilepsy. The doctor was amazing. He met with us for 1 and half hours. We had already started the meds out of fear. The new doc then did a 24 hour video EEG and still has her on meds which she takes half a dose. THe meds took some adjustments but we have not seen anything (knock on wood) in the last 6 weeks. The main reason he kept her on meds is while this syndrome mostly appears at night during sleep, it can show its face during the day. She had one (this syndrome) involves vomitting and one day she looked at me and said I think I am going to throw up. Believe it or not, out of Dr. Pan's boo/study, this is exactly how it shows during the day. Some kids then proceed to throw up and other even show additional symptoms. The good news is this syndrome is benign and all the kids are expected to outgrow it. I give you this long story so that it may help you in figuring things out. Please contact me if you have any questions. I hope your son is doing ok.

Re: Re: New and Confused

Submitted by rayjay on Mon, 2006-05-22 - 16:18

ekoorb- Thank you so much for sharing your experience. This is exactly the same thing. Oh thanks heavens im not crazy! Sometimes these doctors make you think that you are blowing things out of proportion. This is very frightening and it has consumed our lives. I now believe that finding the heart ploblem was just a fluke and that it really has nothing to do with the seizure itself. However, I do believe that the seizure aggravates it. Thanks for sharing and I will keep you posted

Re: Re: Re: New and Confused

Submitted by ekoorb on Tue, 2006-05-23 - 19:50

I am glad my experience helped confirm yours. Hopefully you will get to see a epilepsy specialist and they will be able to further confirm your concerns and help you determine your next step. Please keep me posted and write back if you have any more questions. Good luck.