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.

2 Year Old Still Lacking Diagnosis

Sun, 12/18/2016 - 21:07
Hello, First post and sincerely appreciate any thoughts, recommendations and advice. I know a formal diagnosis is not possible for a forum but know that many of you are going through the same heart wrenching experience and hope to get some ideas on what options to explore next. Son is almost two. When he was a little over one he had what we think was his first febrile seizure. Video below of his second (and so far last) episode that was identical to his first. Second episode came 3 months later. Both times he had high fevers and both were around times when he had strep. https://drive.google.com/open?id=0Bzp7OG9viHTYQ0xqbEJDcDR4bzA We immediately went to a pediatric neurologist after the first episode. After a physical evaluation and reviewing the video he diagnosed night terrors instead of seizures because his movements were not in sync and in both cases I could calm him when picking him up. When he was about 1.5 years old he started a brief, two second twitch where usually his left arm moves, his eyes glaze over and his eyebrow twitches as shown below. First video is when he was around 1.5 years old and the best example is at 49 seconds. The second video is just the other day when he is almost 2 and at 24 seconds in the video. https://drive.google.com/open?id=0Bzp7OG9viHTYckgwWmNRSmtCYTg https://drive.google.com/open?id=0Bzp7OG9viHTYMXdkTk1QZmVmd2c At first he would have 3 to 5 episodes a day. That is now around 20-25 per day. If he is standing he does not fall. If he is eating he does not drop his food. He just pauses. It's more frequest when he is tired or agitated but you can see from the video that it also happens when he is calm. Approximately eight weeks ago my son was put on Keppra to try to minimize his episodes. He is 24 lbs and at first started with a low dose of 1mL twice per day. Every two weeks it increases by .5mL and he is now at 2.5mL twice per day. We have seen no side effects (maybe a little more hyper but nothing bad) but zero reduction in his episodes. It seems the Keppra is not working. My son had an EEG at 22 months. The doctor notes are as follow. Rowan is now a 22-month-old seen for followup of seizures. Both the video (what I provided above) and initial EEG did document the seizure activity. The EEG showed both generalized 3-4 Hz spike and wave discharges as well as right and left frontal spikes. He has been started on Keppra and is now taking 150 mg b.i.d. This is about 25 mg per kg per day and has been used for about a week. He is still showing episodes in which he slows down prior, has some eye rolling, moaning, may have some eye deviation or head deviation, and 1 arm is up. These are quite brief. His development has continued to be normal as is his interval medical history. ...He goes on to note all of the physical tests done and that all are normal. Overall the doctor said he saw activity but that all other development is on track. We just had a take home ambulatory EEG done where we pushed a button each time we saw an episode. He had quite a few and we are waiting to hear the results. We don't feel like we have a good game plan from the current doctor so will be seeking a second opinion in late January. Have any of you seen similar activity and if so, what was the diagnosis and how was it treated? What can I do as a parent other than get another opinion and continue down our current path with our existing doctor? Thank you sincerely for your time...

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.