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.

Night seizures waking my 13 year old

Mon, 11/18/2013 - 14:29
Good afternoon, Apologies in advance for the lengthy post. I really need help/suggestions/experiences from which to pull. I have a 13 year old who was diagnosed with Epilepsy (focal seizures) February 2013. Around November 2012 she started having weird sensations under her left shoulder blade and would lose sensation in her legs and have an episode where she rolled on the ground or shrugged her shoulder rapidly to make the sensation go away. I thought she was being her normal dramatic teenage self so I didn't think much of it until she told me why she was doing it. I took her to her pediatrician who happened to walk in while the episode was occurring. She was checked over and referred to a neuro. EEG showed frequent spikes middle right side. MRI showed no damage. She was started on Keppra at diagnosis. The Keppra has eliminated the day time episodes but not the night time episodes. As a result, Keppra has been increased to 1250mg twice per day. Neuro is considering adding Lamictal to the mediation regimen. I don't want to increase Keppra anymore since I don't see seizure abatement and just want to add the Lamictal so my daughter can get some relief and much needed sleep. The seizures don't last more than 20 seconds but they happen on average 3 times per night. I have brought her into my room so I can keep an eye on her because I don't want her to get hurt or kick out a wall or window when she rolls around on the floor. She had a grand mal September 2013 and another about 2 weeks ago. [Had to transport to ER in September because she was non-responsive to verbal cues and breathing was shallow (I didn't hear anything which I usually did with her typical seizures)]. In addition to the above, I can't tell if her moodiness is normal teenage moodiness since we just diagnosis at the age where the teenage "rebellion" starts or if it the medication. It is almost as if she purposes to do the opposite of what I tell her. She "forgets" to do chores even though I just told her; she won't for school the night before (i.e. lunch box prep, lay clothes out, pack gym uniform) where she had in the past; she's gotten mouthy. School is not a priority (she was a straight A student and doesn't seem to care now as long as she passes) and school projects get done at the last minute even though she has had weeks in advance to prepare for them (she gets stressed which we have learned is a trigger for her). Any help, suggestions, medication therapies you or your children have undergone would be most appreciated. Her neuro takes my input under consideration and lets me know the pros and cons (i.e. gluten and dairy free diet - neuro said no scientific data shows that GF & DF diets help but there is the ketogenic diet that has been successful. Neuro warned that the Ketogenic is difficult to follow and has drawbacks). (again apologies for long post, this is my first "venting" and "asking for help" post ever and I just want to help my daughter adjust and sleep)

Comments

Re: Night seizures waking my 13 year old

Submitted by dipstick on Mon, 2013-11-18 - 21:35
95% of my seizures happened at night. After about a year of trying different meds my doc put me on Dilantin 100mg. After adjusting Dilantin to 4 doses per day I was seizure free for almost 2 years. I went to 5 doses per day and it has worked for me for the last 38 years. I do have a seizure  2 or 3 times a year but I don't think there is a medication that will completely stop seizures. Also, the generic brand would not work for me.  And who knows when the terrible teens will end? I think I still drive my mother nuts at times.

Re: Night seizures waking my 13 year old

Submitted by Whysgirl on Tue, 2013-11-19 - 09:26
Thank you for sharing! I am hopeful, after reading your post, that we will find the right medicine(s) and dosage so that my daughter can have similar results and get some much needed sleep.

Re: Night seizures waking my 13 year old

Submitted by mellion on Sat, 2013-11-30 - 09:48
Be careful with Dilantin. I was to for several years. Have you searched at a Epilepsy hospital with several inpatient days with EEG equipment and they have ability to Watch you in dark. I had one for 5 days then sent me with same equipment for 2 days. I have had parisomia behavior at night my whole life until this test. It showed my parisomial or Seizure preventing me from going into REM sleep (only three minutes a night). I did not get diagnosis until 32 years old. I was able To get a bachelor and master degree in spite of sleep problem. It took 6 years and a lot of dropped classes my parents paid for Without me completing. I have always had partial/gen. And on meds. Me and my mom discussed my academic difficulties and had a neuro Educational workup which gave specific needs I would need to maximize my learning. This gave school ways They HAD to follow to help ME specifically how to learn. I was always an b or c student in 1-12, but got better grades in classes I had an interest (therefore reason for longtime to finish Bach. Always encourage, do not compare siblings and expect them to do homework and the Best they could do in HS. Just because he is not a high achiever does not me be is limited in his life long life. I know make a three figure income with an assistant I pay myself to help with my needs. Do not LIMIT him. Junior college is fine. I look back and wonder if I was able to get my sleep I order in mid 70's how it may have impacted me. Always stay possitive and search out Research based ways to treat his condition. If you advocate know he will know how the rest of his life. Up and down is the part of life we all challenge it is the way learn how to adapt that helps. Hope this help from an ep an sleep problem story with success.

Sign Up for Emails

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