Hi Nik,
It's a strange relieved feeling when I read posts of parents who's child has epilepsy and the other issues my son has. I suppose the coincidence is quite small if not extremely minute.
It is a very strange sort of relief indeed, My DD seems so thrilled to have discovered an explanation that really fits her and what she has been experiencing - especially the de-realization. She has taken it upon herself to do research and read up on this, including finding ways to help control it. She said one method was to squeeze ones fists hard at the onset and focus every bit of attention on one thing or thought as soon as you feel an "episode" start. Kind of like Harry Potter fighting Voldemort from invading his mind lol. While in the back of my mind I am thinking "what if it's a tumor?".
There is still some hesitency from his psychiatrist and psychologist because it may be unfamiliar territory for them. Also, son's neuro is an excellent experienced doctor however, I'm still wondering if I should persue an epidemiologist who has expertise in autistic gifted patients. Insurance can be so difficult to convince when the person I speak to does not have the slightest clue what Asperger, epilepsy, and inconsistent brilliance has nothing to do with poor behavior choices.
From what I have read, there seems to be little solid understanding or agreement among the medical professionals on causes or treatment, so I am hesitant to even try to get an official diagnosis. For now, I am hoping my DD will become an excellent detective to see if she can find triggers and coping mechanisms, now that she knows what is going on, she is in a better position to really examine it. I told her to keep a journal of each "episode" and everything that was going on when it happened, how long it lasted and maybe what she had eaten for the previous few days...She laughed and said she would never be able to stop writing since they happen at least daily...:(
The steps my son is taking is to first control his seizures. His doc increased his keppra and scheduled another eeg in 3 months. His brother and I notice this increase has made him irritable, impulsive, and argumentative. Hopefully in a couple of weeks, his body will get used to the new dossage and most of these negative symptoms will disappear. I thought after a month of taking keppra the first time, the side affects subsided, he became more thoughtful and able to focus more on his tasks. He was also able to rethink his angry approach and try another effective menthod of getting others to cooperate with him. This was something he didn't do in the past. He also became less tongue tied and articulated his words more clearly.
I really hope this works, I want to hear if the negative side effects do go away after a month as I have read alot of bad stuff about the anger and outbursts that come with Keppra but no one mentioned how long they had been taking it so maybe the people posting just quit taking it before they adjusted to it?
Sometimes, I can see where my son may have a 'psychic seizure' because this was where the inconsistancy of his ADHD dx occured. Sometimes he felt he didn't need his adhd meds and other times he thought he did because he can't think or get the words right. Right now he doesn't want anything to do with ADHD meds and his doc warned him about staying away from caffinated drinks. I'm glad he made up his mind and followed through with this for the past few months.
My DD said she feels much more able to think straight in general on the ADD meds but she doesn't think there is a difference in the frequency or intensity of the "psychic seizure episodes" on or off the ADD meds so???
I am curious now about the ADD diagnoses, I can see how many of the checklists and survey responses could have been actually due to the Psychic Seizure episodes rather than ADD but I wonder about the actual IQ test and weather the big spread between VCI and WMI/Processing speed still indicates ADHD regardless of whatever else may be going on (she doesnt remember having an episode during the testing).
We have also been weaning off the caffeinated sodas, switching to Hansen's natural sodas (which still have way too much sugar, but no benzoate so it's a step in the right direction). I have been reading that stress is the number one trigger and that working towards a healthier lifestyle is the best non-medicinal treatment to reduce episodes. Regular exercise, healthier diet and proper hydration...None of this could hurt so that's our first plan of action. I also suspect that because the the AS brings a lower tolerance for stress (higher levels of anxiety), this may be excessively triggering the episodes. It seems that this is one area where they could use their intellect to actively reduce stress or talk themselves out of the stress if they learn to actually recognize when they are feeling it. I read that for some people having an episode in a particular place can cause that place to become a trigger in the future...I am wondering now if my angry/disappointed voice has become a trigger since she seems to "check out" so often when I am talking to her about something she did wrong...Hmmmm, maybe I'll try a new happy voice for the next time she's in trouble...
As far as school this fall, I had him enroll in a community college near our home so transportation wouldn't be too much of an issue and the courses would also help in determining how the meds are working. I wanted him to work on managing his academic habits and determine what is in his control and what isn't. The most fustrating part of all of this is.... the doctors don't really know either.
That is a great idea for testing out performance improvements on the meds. Does he have friends going to the CC too? We tried the CC route before we had any AS or ADD diagnosis as I thought back then that my DD was just bored with HS classes (I still believe that is/was part of the problem) but she found the CC classes equally uninspiring and her performance was about the same. I wonder if it would have been better if she had already had the ADD dx and meds. Another element my DD was dealing with was depression and isolation due to lack of intellectual peers, that did not get better at the CC.
His neuro says because the seizures originate in the frontal lobes where the executive functioning is...we can hope the keppra will take care of the adhd issues especially be allowing him to have more quality sleeping (time when most of seizure activity occur).
I am most interested to hear the results on this, I do think lack of quality sleep is the strongest contributing factor to all of the difficulties. I think if I ever get good insurance or an influx of cash, I would like to have my DD get a sleep study done, I think that could shed a lot of light on things. We have a family history of sleep apnea and she stopped breathing in her sleep regularly as an infant (I spent many hours watching her with a mirror to her nose to see if there was any breath - scary times). I imagine a sleep study should reveal seizure activity as well as sleep apnea?
I thought about asking my son's pdoc to write a letter to his college that would allow him the same type of adhd accomodations he has had last year. It allows him extra time on projects and tests 'as needed'. He usually tells his teacher where he is on his assignment, what issue he is having and reasonable time he estimates he will have it completed.
I would definitely talk to the disabilities office at the CC about his situation ahead of time. My DD has no concept of time so estimating how much time she needs isn't a possibility for her. IF assignments get done, its hours till the deadline and the ink is still wet when its turned in (and that's IF she remembers the deadline). Now she has told me that she did actually know about deadlines she missed previously but didn't want to (couldn't) do the projects because of the writing involved, so she used not knowing the deadline as an excuse. We are still trying to get to the bottom of the writing hang-ups (which is actually what started my whole quest for answers in the first place). I don't know what kind of accommodations would help my DD since she seems to do well on timed tests (beyond writing) and I understand that the college she is going to does not have tests anyway. I am afraid that extended time for papers may just mean that much more procrastination as the few papers my DD has written seem to have been accomplished fairly quickly in one sitting on the morning of a deadline. I am encouraging her to talk to the counselor as soon as she gets there and describe what she has been struggling with and maybe ask for advice i.e. if she has an episode in class and spaces out, maybe she could have a study buddy who will fill her in afterward and if her teachers know this happens ahead of time they may be less inclined to think she is just behaving badly or disinterested.
Have you spoken to a neurologist yet? I think the journal is a good idea. I write my observations down as well as sleep schedule.... he won't jot things down however, his texting log is very telling.
No, we don't have insurance right now (beyond a high deductible catastrophe plan). We also don't have time for a new medicine trial, since she leaves for college in a few weeks. I think my DD is doing much better than she did in the past now that she is more self-aware and with the methylphenidate and melatonin she seems to be handling herself. My DD hasnt agreed to a journal but I am keeping notes and I think I can talk her into keeping a tally log at least so we can track the frequency. What is a texting log?
We are about to go on vacation and will probably totally mess up whatever circadian rhythm may have been established over the summer with the time change! Ahh well, gotta enjoy life...maybe we'll discover she was just meant to live in a different time zone ;-)
