Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Proper care?
Tue, 01/27/2015 - 12:36Hi, we're new to seizures and I need to know if our local neurology clinic is behaving properly. The story is my 18 yo son had his first seizure on sept. 30 hit his head twice from a standing position, ER did a CT scan which was normal. We got his EEG on Oct 13 (soonest they would do it) it showed seizure activity. We were able to get a appt with the clinic on Dec. 2nd where I was informed I had canceled the appt. After forcing the issue they put us in with a Dr on leave from his clinc to "help" with the Paitent load. He is not a seizure specialist. He told my son to take Kempra 2 times a day and come back in 6 months for a repeat EEG. The family care Dr.sceduled a follow up to find out that neuro refused to allow them to manage my sons care and needed to follow up with them. 2nd seizure Dec 21 hit his head again and stopped breathing, it took 10 minuets on oxygen to get him to turn pink. ER told it is normal to stop breathing during a seizure and to call Neuro which I did, got put to voice mail for the nurse and never received a call back. 3rd seizure Dec 31st. Hit his head on ceramic tile and broke his nose. The follow up appt is on Jan 29th with the same Dr who will be leaving in 2 months to go home, I had to call them to get the time and date that they secduled. No MRI was secduled, and I am feeling like my son is'nt getting quality care and am considering taking him to Green Bay which is a 6 hour trip for us. What I need to know is this how they treat people with new seizures everywhere or do I need to take him elsewhere, It seams to me that we should have had a MRI to look for leasions, and I would think it would be the nurses job to call people back if only to reasure them. Again we are new to this, and I know my son cannot continue to "face plant" from heights with out causing some brain damage. I should also mention, it take 30 minuets for an ambulance to get to our house and while I can do CPR I would much prefere not to have to. Any insights or advice would be most welcome. Thank you in advance.