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Panayiotopoulos Syndrome Diagnosis (Long)
Mon, 10/08/2007 - 21:43Comments
Re: Panayiotopoulos Syndrome Diagnosis (Long)
Submitted by wargrass on Wed, 2008-10-22 - 09:54
It is amazing what a difference a year makes. My daughter is much better. She is on Trileptal twice a day. We watch her sugar vs. protein intake and she has regular protein snacks. This makes a huge impact on her behavior and therefor my sanity. Her last EEG showed multi-focal spiking. It was done while she was awake and asleep. Her first (that we know of) seizure was during the day and lasted 35 minutes. Since we put her on the Trileptal she has not had a seizure that went into staticus epilepticus and lasted that long. Her seizures are still there but they are "walking-talking" seizures where she still communicates but has the autonomic issues. We are starting to see her transition into possible Rolandic seizures as well. They are in the same family and apparently this is well documented.
I still do my own research and take it with me to the nuero and pediatrician. I am my daughters best advocate. We measure her weight regularly to see if she has changes and then I call my nuero so that he can recalculate the dosage. Children have growth spurts and I find that a weight change of 5 pounds makes a big difference in the efficacy of the Trileptal.
Issues with her education really need to be saved for another post. They are significant in themselves. Boy have I had to educate the school system, but we are getting there. It helps that more information is available on PS every year.
On a different note, I keep all of the research on a USB thumb drive on my keychain, along with her medical history, so that I have it with me if we have to go to the emergency room. It makes me feel better to know I have all of the documentation in my hands if I need it.
It is amazing what a difference a year makes. My daughter is much better. She is on Trileptal twice a day. We watch her sugar vs. protein intake and she has regular protein snacks. This makes a huge impact on her behavior and therefor my sanity. Her last EEG showed multi-focal spiking. It was done while she was awake and asleep. Her first (that we know of) seizure was during the day and lasted 35 minutes. Since we put her on the Trileptal she has not had a seizure that went into staticus epilepticus and lasted that long. Her seizures are still there but they are "walking-talking" seizures where she still communicates but has the autonomic issues. We are starting to see her transition into possible Rolandic seizures as well. They are in the same family and apparently this is well documented.
I still do my own research and take it with me to the nuero and pediatrician. I am my daughters best advocate. We measure her weight regularly to see if she has changes and then I call my nuero so that he can recalculate the dosage. Children have growth spurts and I find that a weight change of 5 pounds makes a big difference in the efficacy of the Trileptal.
Issues with her education really need to be saved for another post. They are significant in themselves. Boy have I had to educate the school system, but we are getting there. It helps that more information is available on PS every year.
On a different note, I keep all of the research on a USB thumb drive on my keychain, along with her medical history, so that I have it with me if we have to go to the emergency room. It makes me feel better to know I have all of the documentation in my hands if I need it.
Re: Panayiotopoulos Syndrome Diagnosis (Long)
Submitted by mom0817 on Wed, 2008-11-12 - 15:21
I have two daugters with PS. They would feel naseau and after sometime lose consciousness and then fall asleep. I started my research after my second daughter had her seizure. I also had to take the diagnosis to the doctor and he agreed that PS is the diagnosis for my girls. He was not aware of Panayiotopoulos Syndrome either but he is very cooperative with us. I am trying to do my part and bring more awareness to Panayiotopoulos Syndrome so that future parents and children can have their answers sooner than we got ours.
My worry is that we will be travelling on airplain next week and I have found out that sometimes motion sickness trigers the seizure. I hope we do not experience the seizure on the airplane.
I have two daugters with PS. They would feel naseau and after sometime lose consciousness and then fall asleep. I started my research after my second daughter had her seizure. I also had to take the diagnosis to the doctor and he agreed that PS is the diagnosis for my girls. He was not aware of Panayiotopoulos Syndrome either but he is very cooperative with us. I am trying to do my part and bring more awareness to Panayiotopoulos Syndrome so that future parents and children can have their answers sooner than we got ours.
My worry is that we will be travelling on airplain next week and I have found out that sometimes motion sickness trigers the seizure. I hope we do not experience the seizure on the airplane.
Re: Panayiotopoulos Syndrome Diagnosis (Long)
Submitted by juneyoh on Mon, 2008-08-18 - 15:04
i had a terrible experience at child neuro associates. I couldn't even see a doctor so i had to meet with the nurse practicioner. and also the eeg wasn't done while the child was asleep. they first diagnosed her with complex partial... while i could see none of the symptoms really matched my child..... i wanted to get a second opinion and found a great doctor at Children's Hospital at Emory and they had my daughter sleep while they took eeg and diagnosed her with PS. Hope your daughter is doing better..