Jake,
I am amazed at how you have been able to deal with not only the amount of seizures and different medications, but the fact that you spent 8 months in a induced coma. I think if that were to happen to my son, I might end up in the bed right next to him! I am so sorry to hear that you lost those 15 years and the ability to play the piano. That has to be so difficult. My son loves the piano. When Keegan was young, we used to play a game where I would hit certain keys without him seeing which ones and then I would give him the piano and he would imitate the keys I hit in order. I don't know how he knew but somehow he did. What type of seizures were you diagnosed with, if you don't mind me asking? I believe Keegan's are tonic-clonic (just by researching), although the neuro hasn't given me a type of seizure. Although we have no warning signs, Keegan does. He will yell out prior to the seizure but once he yells, it's within one second that he loses consciousness and falls, arms and legs spasming. They only last for 30-45 seconds. He's out of it right after the seizure. It takes him a while to be able to stand up after and then he sleeps for several hours. Keegan has had multiple MRI's, CT scans, EEG's. He's had several EEG's where they monitored him for 4 hours and they all came back normal. As I said, his MRI showed a slightly irregular and atrophic left hippocampus ("suggestive of mesial temporal sclerosis") according to the radiologist but he has never been formerly diagnosed with mesial temporal sclerosis. The MRI results have never changed since birth. Due to being premature (3 months early, grade one IVH, oxygen deprived due to cord wrapping around his neck=emergency C-section). Keegan had 2 neurologists that followed him closely for the first 15 years of his life. The first retired, the second neurologist passed away suddenly. Prior to her passing, everything was status quo and we no longer needed to see her every 6 months. She said follow up if there's any changes. In fact, when we first saw his new neurologist after his first seizure (in late 2020), she diagnosed him with convulsions, unspecified. I did learn that her bio states she is a neurologist and epileptologist. He is taking Lamactil. We started at 25mg and increased weekly until he was on a dose of 100mg twice daily. After his second seizure, we went up to 150mg in the am and 100mg at night. We are now (after 3rd seizure) on 200mg twice a day. His neurologist wanted him off his anti-anxiety med (Buspar) so we are weaning him off. She said long term use of Buspar can cause seizures and he's been on it well over a decade. So, now we are trying to figure out if we can get info on CBD dosing and see if that can replace his anti-anxiety or will he need a new one. The neuro said if the increase in Lamactil doesn't work, she'd like to add Vimpat but for now, I just wanted to increase what he's already on. Increasing that and removing Buspar is enough changes at once. I always prefer (if possible) to remove/add one thing at a time so if there is a reaction, I know what's causing it. Not the case this time. As far as I know, he doesn't have seizures at night, but I could be wrong. He has difficulty staying asleep so he takes melatonin (10mg) at night to help him sleep. He's a very light sleeper typically so I can't open his bedroom door without waking him. The seizures we've seen are always in the morning time, right around 9-10am. Not sure why that is? I do plan to take him to Mayo if we can get a referral from our insurance. I'm not sure they take both of Keegan's insurances but our PCP is working on it. If not, we also have Barrow Institute here which is a level 4 center, so that may be another option. I also plan on doing the test through Gene sight to see if we can narrow down which meds work best for him and which are absolutely not good. I'm sure you know the drill of having to take a med for at least 30 days and then if it doesn't work/help, gradually reducing it, only to try the next med and repeat the process. IF there's a test that can tell me "x" works for him, "x" will work with higher doses and maybe some side effects, and "x" is definitely going to cause him side effects, I'm definitely going to give it a shot.
I did hear from my son's PCP and developmental specialist that for some, switching brand to generic or different manufacturers could cause some people issues. I don't know if it's the manufacturing process that's different or why exactly but we try to stay with the same manufacturer.
Right now, it's a bit of a struggle for Keegan removing his anti-anxiety. We took him off Buspar once before but his anxiety and OCD got so bad, we ended up putting him back on. Really hoping we get the kit from Gene Sight soon. I was told that once they receive the kit back, it only takes 2 days before results are in.
Question for you...I'd love to know if you took Lamactil and if it caused you any side effects? I'm watching Keegan like a hawk and so far, I don't see anything negative but that doesn't mean he's not having side effects that aren't obvious.
Kerry

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