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: Re: Re: Re: New and Confused

Submitted by ekoorb on Mon, 2006-05-29 - 21:17

Our daughter is on Topomax but only once a day---a dose of 15 mg. before bed. We were supposed to double the dose within 2 weeks of beginning it but between the time we stared the meds and the time we were supposed to up it, we left the neurologist we were seeing and started with the epilepsy specialist. He does not like to medicate unless it is necessary. While he was trying to determine which type of epilepsy she had (he was between Benign Occipital and Benign Rolandic) he decided not to up the dose. Once he diagnosed her with benign occipital, he decided to keep her on the meds but to wait and see how she was doing on the half dose. She has adjusted to it now. I too was sooooo nervous about starting the meds. I am the type who does not like to even take Advil unless I have gotten kicked in the head by horse! Anyway, her sleep seems so much better now. I hate to say the seizures stopped because I don't want to jynx anything but things have been going well. The only thing that has happened in the last few months is twice, she has looked at me, wide eyed and normal and said she felt like she was going to throw up. This actually is how benign occipital manifests in the day. (the experience you and I described is what occurs at night) Then it can progess into other things. She did not throw up and nothing happened from there. I am not even sure if those instances were a part of the syndrome or if it was just my daughter feeling nauseous. It is hard to know. There definitely was an adjustment period to the meds because she felt a little weird and sad at first. She also was a bit impulsive. She has always been an excellent oral negotiator and she actually used her hands a few times when disagreeing with a friend. That is so much better now. I just know I have to keep her well rested and then the meds don't seem to affect her mood. As to your doctor not being able to identify her particular issue, what do you mean? Are you saying s/he is not sure if it is epilepsy or not sure as to what type? If s/he is not sure to the type, did you suggest benign occipital childhood epilepsy? It may take you a while to get into an epilogist so in the mean time, if you are filled with questions, which I am sure you are, you should ask your ped. neur. to clarify that. S/he has put your baby on meds and certainly should have the time to explain stuff to you. My first doc was such an -SS. Our current specialist is amazing. He talked with us for 1 and half hours the first meeting. Information here will really help you get your feet back on the ground. I actually cried during the meeting because I was so happy that someone was giving us information and treating us with kindness. How is your daughter doing on the meds?

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

Submitted by colelu on Wed, 2006-05-31 - 22:29

After hearing your comments and doing some research on Panayiotopoulos Syndrome, I phoned my daughters neurologist and asked for a call back. I informed the nurse that I had a few questions regarding the medications and wanted to know if Panayiotopoulos Syndrome was the diagnosis for my daughter. The doctor said she had never heard of Panayiotopoulos Syndrome and I could discuss it with her further at my next appointment. I then asked for a referral to an epilogist and she stated that that was not necessary and these referrals are usually for people who have tried 4 or 5 medicines unsuccessfully. I am so pissed. I need a new doctor.

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

Submitted by woodcarver3 on Wed, 2006-05-31 - 22:35

stick to your guns the doctor does not always everything. you are the boss.