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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: Re: New and Confused
Submitted by ekoorb on Fri, 2006-09-15 - 15:51
The onset of Benign Occipital Childhood Epilepsy is most coommon around the ages of 4-6. What you described sounds so similiar to my daughters which I discussed earlier in this thread. Make sure you bring up this syndrome because some doctors are not aware of it. The good news is that it is a good prognosis because as frightening as these seizures are (there have been some reported in Dr. Panayiotopolous lasting hours) the prognosis is good because the children are supposed to outgrow them. I am kind of on a mission here because it seems a lot of the neurologists are not aware of this syndrome. We got very lucky to find an amazing doctor early on who knew how to identify it. I always look for people like you (and me) with similiar stories so I can pass on the information. As to you neurologist not being aware of the coughing thing, I think you should either ask him or her to read about BOCE and also to look into Benign Rolandic Childhood Epilepsy. The second is a more know form but also involves vomitting. If you doctor is not willing, then I would look further. I am going to add you to my buddy list in case you want to chat on this. I hope you son is feeling better.
Re: Re: Re: Re: New and Confused
Submitted by traceya on Sun, 2006-10-01 - 19:21
Thanks for the response-I just received it-Finding you on this site has helped ease my mind-and put a name to the condition. My son has allergies-so I thought the coughing was due to that and then causing the seizure. He also has a lot of obsessive behaviors-do you have any of the same issues? I still need to do another eeg-I think you probably read that after sleep depriving him and taking him in the machine was not working properly-I have so many different issues with Connor and have not been back to get one. He has had 5 seizures all together-the first being the scariest-the ambulance came and had to administer oxygen and ivs.
Re: Re: New and Confused
Submitted by traceya on Fri, 2006-09-15 - 10:45
This is exactly what happens to my 6 year old-out of sleep gagging-coughing and once vomiting-he then blanlly stares and eyes roll up-The first one he had to have an oxygen mask-his vitals were not good-I have been searching for some similiar stories-so glad I found you all-It happened again this morning-He has a bad allergy cough-he is on zirtec-which does help-I thought the coughing was somehow making this happen. He has had multiple head hits growing up-also thought there might be a connection. He had an eeg(sleep deprived) the machine broke-have to go again-we have rainbows childrens close by-I think we are in good hands-but the nuerologist doesnt act like she has dealt with the coughing-gagging before thing.