I don't know if I've mentioned this before, but my teenage son has epilepsy. We went through about 2 yrs worth of seizures, before finally finding a good dose of his medication and staying seizure-free for another two years. Then he was allowed to wean off of the medication (after a normal EEG). We weaned him off of his med starting last April/May. He was doing great.
Until this morning.
Loud thumping against the wall around 6:30am. I thought it was my neighbors, who are normally VERY quiet, banging doors/walls in their house. Then the noises stopped after just a minute or so.
Thank goodness I have a weak bladder, because I went and got up to use the bathroom. I pass by my son's room on the way, and whattya know...........I find him immediately post-ictal (post seizure) in his computer chair. He got up from his bed to turn his monitor off, and apparently he then seized. I found out how he got to his computer chair after he woke up, and asked him what were the last things he remembered. He said that he fell asleep watching TV on his computer from his bed - with the screen tilted towards his bed. He said he remembered getting up to turn it off and turn it around to his chair, then nothing.
He's never been diagnosed with lights being a trigger for his past seizures. They would literally come out of the blue. Any time of the day or night. At home, at school, in the car.
After consulting with the on call doctor on the phone, he's now been restarted on the medication he was on before. Plus, we need to contact his pediatric neurologist on Monday for further evaluation and medication dosing.
12 comments:
My friends had recommended your blog to me when I was pregnant, but I never had time to visit it. Today, I randomly decided to visit it and was shocked to see this post. My 4 month old daughter began having seizures a month ago. I'm sorry to hear that your son has had another seizure and my thoughts are with you. I hope you are able to quickly sort this through.
I'm so sorry to hear that you're dealing with this again. I hope the doctor can swiftly find the cause and treatment!
Sweetie! What a time you've been having....
((super big hug))
@Megan: welcome! Have they run any tests yet to see what the seizures are being triggered by, or caused by? My son's seizures started at age 14 - out of the blue. His MRI scan showed some microscopic holes in his brain in certain areas, and some sclerotic (scarred) areas in his left temporal lobe. It was theorized that since he had no history of head injuries, that it probably originated with a viral infection, and crossed the blood-brain barrier, causing the abnormalities in his brain.
Oh that sounds so scary. I dread being awakened by those thumping noises... I know them well.
My husband has seizures - both absence-type eye-blinking ones (esp in bright sun) and tonic/clonic ones that started when he was ~17. They're well-controlled with Dilantin... as long as he TAKES it. Which he does now. He was very noncompliant as teenager, young adult (when I met him), then took the medicine well for years and didn't have any seizures. Then decided he didn't need as much medicine as he was prescribed and decided on his own to take half (classic, I know)... without telling anyone. And then had three seizures in a year. I was about beside myself. Once he realized I was going to make him have a neuro appt and that I was going to go WITH him to get some answers, he came clean, started taking his proper dosage again, and has been seizure free...
His trigger is waking up from sleep still tired, esp being woken up. Many of his seizures have been in the bathroom - great place, eh?
Anyway, if there's any support I can offer you, I'm happy to do it.
Oh man. I hate when kids have seizures! So glad you caught this.
The son I had that died when he was 10 months old(3/22/95~2/2/96), began with seizures at 5 months of age. I would not wish any of my experience on anyone.
I remember how very helpless I felt.
I was fortunate in that my best friend was a NICU nurse who had a child with a seizure disorder to guide me along.
Hugs and prayers cooing your way.
And oh, please don't take this in a negative way. Just sharing my experience, not being a doom monger.
Now I'll shut the heck up. ;)
Hey Crazed Nitwit: I would never tell you to shut up. I appreciate your openness about your experiences.
Thanks. Nice to know someone gets me. (grins)
Mega hugs to you and your son.
Oh, I am so very sorry this is happening. I'm also sad to see other posters who have dealt with seizures with their children. Blessings to you all...
Super scary! My son had frequent grand mal seizures from infancy to toddlerhood.
Oh, that is very unfortunate. Just as things seemed under control. Hope the drugs do the tricks.
@ Megan - have your providers check your daughter for Tuberous Sclerosis (TSC). It is a genetic defect which is not too well known. However, seizures can be a symptom and they usually start as early as 3 months. Very often, it is misdiagnosed as seizures / epilepsy. Thing is that there are very good drugs for the seizures that are caused by TSC that would not work / are not described for epilepsy. I am not a medical professional but do have personal experience with TSC.
Oh I'm sorry to hear he (and you!) are having to deal with this. My teenage cousin has been troubled by seizures his whole life, when he was younger they were less frequent but he's been having more (he's, oh, 15? now?). They haven't been able to find his triggers, he gets them randomly walking home from school or just around the house. Last time he lost a tooth hitting the asphalt, thank goodness he was not walking alone and his friend called 911. I hope you are able to get his meds adjusted and working again!
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