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Child newly diagnosed - need help!
Tue, 01/22/2013 - 16:23My 15-year-old stepson was diagnosed with epilepsy yesterday. The neurologist met with him for no more than 10 mins, asked about the seizure (which we aren't even sure that is what it was) and diagnosed him with epilepsy, even prescribing medication. Is this far fetched? I thought he would need to at least take blood tests, potentially MRI or some type of scan. Would love to get anyone's advice on whether or not this is unusual. I plan to seek another opinion, but thought I would get as much information as possible, as this is new to us and maybe what I am expecting is not how it is done. Please help! Thank you kindly!
Comments
Re: Child newly diagnosed - need help!
Submitted by slininger on Sun, 2013-02-17 - 22:41
I am sorry you have to face this. It can be very overwhelming as a parent. Given his age, you should seek opinion and direction of care of a pediatric epileptologist. Do some research. Find out where the closest one is to you, and who they are affiliated with. You can usually find an email or contact address for direct communication. Normal wait times for new appointments can take months unless you locate and exploit these back-channel direct contact routes. Differential diagnosis is essential to correct treatment, which includes many diagnostic tests it sounds like you have not yet been through.
If epilepsy is what is believed he has, look for a Level 4 comprehensive epilepsy center. Then look for pediatric care. Pediatric care may not be available in the closest EMU.
Speaking from experience,
ken
Re: Child newly diagnosed - need help!
Submitted by ROSEmomofZ on Sun, 2013-03-10 - 21:09
I am only talking from my experiene however....if I were going to an intake today I would want to know....
If an EEG is suggested? What type of epilepsy does he have ? How that is established without an EEG? Why is this medication being reccomened? What triggers might be involved? That way you
You can plan and have info. for contacting his school
and understanding and helping him understand his condition.
Re: Child newly diagnosed - need help!
Submitted by clwjustyce on Tue, 2013-02-12 - 19:36
Sorry to hear about your step son. I'm sure you are really scared and confused. What happened during this "seizure"? My son is 19 and has epilepsy. It took us a long time to get diagnosed. Has he only had one episode? How bad was it? There are tests that can be done but it doesn't mean they will show anything. Tests can come up normal and you could have epilepsy. It depends on what type of test. They will do one, find nothing and then do another. What kind of epilepsy did they say he had? There are sooo many. Hope to hear from you. Best of luck. I'll answer with the best of my ability as someone who has gone through this. There are 8 people in my family that have epilepsy. Stay strong,
carrie
Sorry to hear about your step son. I'm sure you are really scared and confused. What happened during this "seizure"? My son is 19 and has epilepsy. It took us a long time to get diagnosed. Has he only had one episode? How bad was it? There are tests that can be done but it doesn't mean they will show anything. Tests can come up normal and you could have epilepsy. It depends on what type of test. They will do one, find nothing and then do another. What kind of epilepsy did they say he had? There are sooo many. Hope to hear from you. Best of luck. I'll answer with the best of my ability as someone who has gone through this. There are 8 people in my family that have epilepsy. Stay strong,
carrie