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Medic ID bracelets for toddlers
Sun, 10/04/2009 - 04:09HI I my 3 year old has partial complex seizures that have gotten worse since first being diagnosed in January. Im afraid her seizures are going to develop into tonic clonic's. Her neck is starting to be like a noodle during her seizures and she can't hold her head up. Her seizures have gotten so much longer in time as well.
Do any parents of epileptic children have their kids wear Medic ID bracelts? She is starting preschool in the next couple months. As soon as she is put on the right medication. I have an appt. with a new neurologist on Mon., hoping to get some answers to why she is seizing so much being at almost the max dosage of Trileptal for her age and weight. I have been calling her neurologist for the past 10 days straight only to receive one phone call back at 7:30 pm (that i missed) telling me he was going on vacation. The same doctor that has been increasing her Trileptal rather than trying to figure out what the right medicine is for her. I feel so helpless watching my daughter got through this. She asks me why her face shakes. She has extremely strong seizures in her face. She drools buckets and can't speak clearly after a seizure for sometimes a couple hours. Her speech is so slurred. I just need some support from people that have been going through this longer than my daughter and I.
Re: Medic ID bracelets for toddlers
Submitted by Cali06 on Fri, 2010-01-22 - 11:37
I wanted to give an update on my daughter. We went to UCLA on Jan.7th for a 24 EEG. We ended up staying for 7 days!! It was one of the hardest things I had to do with her. She had an MRI and a PetCT scan. Both coming back normal. My daughter had 2 seizures on the drive to the hospital and of course when we get there, she didn't have any. She hasn't had a seizure since that drive to the hospital. The doctors completely cut her meds on day 3, Trileptal and Depakote, trying to induce a seizure so they could read her EEG. Her spikes on her EEG were at 65% when we went to the hospital and dropped to 25% after 3 days with no meds. Her doctor presently is a great epileptologist out of UCLA that ordered her EEG and believes that the Trileptal that she has been on for the past year has been harming her and making her seizures worse and worse. He was the first doctor to not increase her meds within our first visit. Everytime she saw a new neurologist out of CHOC St. Joseph and CHOC Mission Viejo they would increase her Trileptal and add another drug on top of it. My daughter was so heavily medicated and would sleep all day. She is now taking a very low dose of Keppra.
We left the hospital after our 7th day because she had enough of being restrained to a bed. Lola is 3 years old and wanted so badly to go play. We stayed on the Oncology unit and it made me really grateful that my daughter has epilepsy and not cancer like every other child I saw. My heart goes out to every mother that has a child with epilepsy or any other disease or condition.
I wanted to give an update on my daughter. We went to UCLA on Jan.7th for a 24 EEG. We ended up staying for 7 days!! It was one of the hardest things I had to do with her. She had an MRI and a PetCT scan. Both coming back normal. My daughter had 2 seizures on the drive to the hospital and of course when we get there, she didn't have any. She hasn't had a seizure since that drive to the hospital. The doctors completely cut her meds on day 3, Trileptal and Depakote, trying to induce a seizure so they could read her EEG. Her spikes on her EEG were at 65% when we went to the hospital and dropped to 25% after 3 days with no meds. Her doctor presently is a great epileptologist out of UCLA that ordered her EEG and believes that the Trileptal that she has been on for the past year has been harming her and making her seizures worse and worse. He was the first doctor to not increase her meds within our first visit. Everytime she saw a new neurologist out of CHOC St. Joseph and CHOC Mission Viejo they would increase her Trileptal and add another drug on top of it. My daughter was so heavily medicated and would sleep all day. She is now taking a very low dose of Keppra.
We left the hospital after our 7th day because she had enough of being restrained to a bed. Lola is 3 years old and wanted so badly to go play. We stayed on the Oncology unit and it made me really grateful that my daughter has epilepsy and not cancer like every other child I saw. My heart goes out to every mother that has a child with epilepsy or any other disease or condition.