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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

Thank you for replying!  He's

Submitted by KeeKee on Mon, 2016-05-30 - 10:50
Thank you for replying!  He's seen 3 neurologists so far, and none have mentioned the "emergency meds" until the other day at the ER.  Maybe it's because most of his seizures are in his sleep when he's alone, so no one knows the severity of them.  The ones that have been witnessed have all been complex partial except for the Grand Mal one the other day and one other time.  I wasn't aware they made an intranasal one, but I'm definitely going to ask about that!He's applied at the Office of Accessibility at this college, and they've provided some help.  There again, he has not been forthcoming with his professors about his condition (due to embarrassment and just wanting to be "normal",) so I'm scheduling an appt to go with him to talk with his counselor to hopefully get better plans in place for next semester. Again, thank you for your advice!

Thank you for replying!  He's

Submitted by KeeKee on Mon, 2016-05-30 - 10:58
Thank you for replying!  He's seen 3 neurologists so far, and none have mentioned the "emergency meds" until the other day at the ER.  Maybe it's because most of his seizures are in his sleep when he's alone, so no one knows the severity of them.  The ones that have been witnessed have all been complex partial except for the Grand Mal one the other day and one other time.  I wasn't aware they made an intranasal one, but I'm definitely going to ask about that!He's applied at the Office of Accessibility at this college, and they've provided some help.  There again, he has not been forthcoming with his professors about his condition (due to embarrassment and just wanting to be "normal",) so I'm scheduling an appt to go with him to talk with his counselor to hopefully get better plans in place for next semester. Again, thank you for your advice!

Thank you so much for your

Submitted by KeeKee on Mon, 2016-05-30 - 10:58
Thank you so much for your insight and advice!  I'm going to read this over and over and try my best to "psych myself up".  I know it bothers him to see me so upset, and I'm trying really hard to not smother him when he's home because I know that will make him come home even less.   Thankfully he is moving into an apartment with a couple of guys that I know will be much more observant and look out for him.  I'm trying to reach his neurologist now to see if he needs to be on a different medication also.  I will be checking out the link you sent me as well.  I'm not sure if I mentioned that we currently have a June 24 appt at UAB (University of Alabama Birmingham) to try to get on the CBD Oil trial study,  My son had already done a lot of research on medical marijuana before he developed epilepsy, so we're both anxious to hopefully give this a try if he's accepted.  

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