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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: Re: Re: Re: Re: Re: New and Confused

Submitted by Spiz on Wed, 2006-05-31 - 23:14
I agree, you do! Use the link that barbie supplied earlier: http://www.epilepsy.com/dr_redirect.html It may take some time for an appointment date, but it will be worth it. They are there for anyone with epilepsy. It sounds like the doc is out for herself instead of her patient. Good luck and best wishes! -Spiz

Re: Re: Re: Re: Re: Re: Re: New and Confused

Submitted by Spiz on Thu, 2006-06-01 - 00:16
Panayiotopoulos Syndrome In Panayiotopoulos syndrome, seizures comprise an unusual constellation of autonomic, mainly emetic, symptoms often with unilateral deviation of eyes and other more conventional symptoms. Seizures are nocturnal in about two thirds of patients. The full emetic triad (ie, nausea, retching, vomiting) culminates in vomiting in 74% of seizures. Other autonomic symptoms may occur, including pallor, sweating, flushing, cyanosis, mydriasis, miosis, hypersalivation, bladder or bowel incontinence, abnormal intestinal motility, and cardiorespiratory and thermoregulatory alterations. Brief apnea and irregular or heavy breathing is reported to occur in 7% of cases. Ictal cardiorespiratory arrest has also been reported. Headache and cephalic auras that may be autonomic manifestations may occur, particularly at onset. More conventional symptoms may follow, including confusion or unresponsiveness, eyes and head deviation to one side (60-98%), wide opening of eyes without deviation, speech arrest, hemifacial spasms, and visual symptoms or hallucinations (6-9%). The seizures may end with hemiconvulsions, often with jacksonian march (19%) or generalized convulsions (21%). Ictal syncope has been reported to occur in one fifth of cases. Typically, the seizures are infrequent but long; 44% have seizures lasting 30 minutes or more, consisting of autonomic status epilepticus. Hemiconvulsive or generalized convulsive status epilepticus is rare (2%). One third of patients have a single seizure only. About half have 2-5 seizures. Only 5% have more than 10 seizures.

Re: Re: Re: Re: Re: Re: New and Confused

Submitted by ekoorb on Thu, 2006-06-01 - 09:04
I know this is frustrating but it sounds like you definitely need to find a new doctor. As to going to a specialist only if meds don't work, I don't agree with that. I started with a neurologist who I did not like and switched within months to an epilogist. I was in the process of switching even before we started meds. Do not let your doctor intimidate you. Go with your gut. That is what we did when we were not happy with our doctor. Unfortunately, it may take months to get into a specialist. Do you need a referral (possibly an HMO) or can you go about it on your own? Having the right doctor will really ground you during this scary time. Please keep in touch and let me know how things progress. In the meantime, the email of the publisher of Dr. Panayiotopoulos's report is johnlibby@aol.com. Maybe you can get the report that way or suggest that your neurologist does until you are able to switch to the specialist. Please let me know how things progress. It sounds like you are headed in the right direction. If you have any questions, please do not hesitate. Maybe we can set up a time to talk in the chat room if you want. Good luck.

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