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.

More subtle (partial maybe?) additional seizures

Tue, 02/03/2015 - 11:08

Hello, after a really long diagnostic process my 5 year old was recently diagnosed with Epilepsy.  She has complex partial and secondary generalized seizures specificallly.  The complex partial seizures that her neuro diagnosed are pretty easy to identify because she does what I think is called posturing with one of her arms and hands when she has them and her facial expression and eye movement is very strange.  The generalized seizures she has less frequently are easy to identify as well because of the falling over and convulstions.

  There are a few other problems she has as well that I do wonder if they may be related to epilespsy and seizures.  Its hard to talk to her about them and get clear answers because she is so young and of course they cause her to feel disoriented too.  One is that when she concentrating hard on something mentally she often kind of freezes and stares off for a minute.  It is difficult but not impossible to get her to respond when she does this.  It's not so much like a daydream I don't think because it will be, for example, in the middle of her talking to you about something she will stop mid sentence and stare off for a minute before continuing.  Or when she's playing dolls with a friend, she will just freeze in position for 30-60 seconds before continuing.  If you call to her repeatedly she will eventually respond although she seems slightly disoriented and irritated.  She doesn't forget what she was doing though, she will continue on with her story or her game or whatever she was doing. 

The others have to do with her movement.    She has low tone, but its presentation varies, one time they will examine her and say it's moderately low, another time they will say it's only slightly low.  Because of the variability I wonder if it relates to seizure activitiy. 

Finally she has some tremors and involuntary movements.  They have been noticed by occupational therapy who insists they have got to be neurologic in origin but the neurologists she's seen can't seem to get them to happen during their exams.  The tend to occur again when she is concentrating hard or something that's difficult for her.  Sometimes these seem to be either seizure triggers or else maybe they are signs that a seizure is coming.  One example of this is when she got her hair cut awhile ago, she was trying really hard to hold her head still with her eyes closed for the stylist.  The harder she tried the more shaky she would be.  When the haircut was over she had a seizure.  She also has had a seizure every time she's worked with a physical therapist for her low tone, which makes physical therapy pretty unproductive although she needs it. 

Right now she is newly on a low dose of Keppra which the neurologist will likely increase in a couple of weeks.  Should I expect that the things I mentioned are part of her seizure activity and that the right medication should help her with those things as well?

Comments

AngelaThe episodes you posted

Submitted by Anonymous on Wed, 2015-02-04 - 09:39
AngelaThe episodes you posted about are or could be different seizures. Mereloaded said absence seizures which someone looks like they are in a daydream. I had them in school and had been written up for day dreaming in class for over a year. They could also be partial or simle partial seizures. I have some that affect my hand and in those I may look like I am day dreaming but I can see hear and understand things going on arround me. When I was diagnosed they were focal motor seizures. A focal motor seizure can generailze and if they do they can become convulsive and look like a grand mal seizure. So yes they could be seizures. As for keppra    It is the best seizure medication I have ever used in the 50+ years I have been living and dealing with epilepsy.As the doctor said take it for a few weeks then they will try to adjust the dosages. It takes time for the body to get used to the medication and after each dosage change time is then needed to see if it is controlling more seizures. The seizures I am having were 1-5 minutes long and the time to get back to normal took 10-45 minutes. Now those same seizures are seconds in length generally 2-5 seconds and time to get back to normal is roughly the same. I can have a seizure while talking to you and you would not know I had one. My PCP didn't know I had one until I told him I had it while talking to him. He was amazed to know that mine are that short considering he had seen me in them before. I see people in here posting they may need to go to another medication which is designed for certain seizures. Wellllllllll I have been in drug studies and know that once a seizure medication is approved for use the testing does not stop. The drug (medication) was designed for certain types of seizures true. After testing they then are tested to see if they work on otherr types of seizures. They are also tested to see which medications they can be coupled with for better control. So listen to the doctor and understand that it does take time to adjute dosages and if necessary couple medications. I would also suggest you get the My Epilepsy Diary. Use it and giver her doctor permission to bring it up. The doctor can see the graphs and everything else in it and by doing that he may come up with dosages, medication or procedures that can help. I hope this helps and she gets seizure free Joe

Sign Up for Emails

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