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Mom of Son Away at College

Sun, 05/29/2016 - 09:14
My son is 19 and was just diagnosed a year ago with Epilepsy. He had been experiencing "zoning out" during school and was having weird occurrences during his sleep that he had told me about, but at the time it didn't seem to be anything to worry about I thought (and I'm a big worrier). I witnessed his first seizure last June, in my car, and I found later it was a "partial complex" one. He was "zoned out", mumbling, smacking his lips, and doing repetitive motions with his right hand. After seeing a neurologist and having an MRI and EEG, he was diagnosed. Nothing has shown up abnormal on the 3 EEGs and 3 MRIs he's had, other than occasional misfiring on the left side of his brain. He was first put on Lamictal but had problems with some side effects. He was then put on Vimpat. During this time he moved away to college, about 2 hours from home. He had his first (that we know of) Grand Mal seizure late one night in November while there and was taken by ambulance to the ER. Of course I took off as quickly as I could to be with him. The Dr there changed him to Keppra and we also got him a new neurologist closer to his school. He had serious side effects with Keppra (depression, anger, mood swings) so the new Neuro switched him to Oxycarbizine (3 times a day). Since then, he's had a few seizures during his sleep. The only way that I'm aware of this is that he doesn't get out of bed the next day and is completely out of it for several hours (lethargic, not very coherent, etc). I don't know what type seizures he's having as no one is there to witness them. He also will throw up a good bit and have a migraine. Needless to say I stay a nervous wreck, and want to check on him each morning and panic if he doesn't answer. He has a roommate, but she hasn't been very good about checking on him. Honestly I think it scares her and she's afraid she might find him dead. He came home for a few days last week, and yesterday we heard a weird growling/gagging sound coming from downstairs in his room. I found him in a corner, fully convulsing, eyes rolled back. It was awful! My daughter called 911, and this seizure lasted for several minutes where he was unconscious but still convulsing and vomiting. He was taken to our local ER, but basically all they did was put him on an IV with Demerol for his migraine and Phenegran for his nausea. They did basic bloodwork, but of course nothing showed up. We came back home but he had another seizure within an hour after being here. He was still in his bed but convulsing and his tongue was dark blue. Called for an ambulance again, but by the time they got here, he was out of it, and got really ugly with the paramedics refusing to go back to the hospital. Since he's 19, they couldn't force him. I stayed by his side the rest of the night and he's OK this morning, just very tired and grouchy. His memory is also GREATLY affected! He never remembers what happens during and right after his seizures, but it's also wiped out "normal" memories of events that have recently (and not recently) taken place. This of course is affecting his studies as well. It breaks my heart to see him struggling. I know this was very long, but I feel so alone (I'm a single mom) and I stay worried all the time. I've cried all day yesterday and all night and I'm still crying now. This is my BABY, and I want to protect him. I honestly think he is forgetting to take his medicine some and that's what caused this, but I don't know since I'm not with him normally. He gets so mad with me for worrying and "making a big deal" out of it, and he just wants to be treated "normal" and not have everyone worrying about him. It's killing me, I'm an emotional wreck thinking what might could happen.

Comments

I know it is rough on mothers

Submitted by just_joe on Mon, 2016-05-30 - 12:34
I know it is rough on mothers. I wanted to be treated like everyone else. As for meds there are several that are used to stop seizures. Seizures that are back to back within hours can and are considered cluster seizures. If not taken care of they can go into status epilepticus which aint fun. Oh and we are talking about any and all seizure types. I have one I carry with me. When it was prescribed I was to use it after the second focal seizure (like a simple partial)  I had. I had 4-5 back to back and was taken to the ER  a few years ago. Now we have moved taking that med to after the first seizure. So yes he does need to look into that. I even think they may have a pen thingy so a shot can be given but like I posted "I think"As Amy Jo posted the universities have people like counselors that can work with students with disabilities.

Thank you for your input, and

Submitted by KeeKee on Mon, 2016-05-30 - 18:06
Thank you for your input, and I'm praying your seizures stay under control as well.  

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