As a pp mentioned, seizures can be so different and so subtle.
I was never able to get anything on video. My seizure journals were not useful because I was rarely sure if something was a seizure or not. I kept hearing about parents going in with video and journals and felt like a horrible mom that I didn’t have all that – don’t beat yourself up if you cannot provide documentation. However, I’ve found the doctors take it more seriously, especially at the beginning, if you can provide something. According to the EEG's my daughter is having seizures - lots of them. However, there are normally very few outward signs. Like you, I suspected seizures based upon her 'zoning out', staring, acting oddly, melt downs, and occasionally tremors in her hands and feet. The tremors were seen by one of her therapists. Having the therapist's note in my hand helped the pediatrician finally listen to me and made me stop doubting myself. That is when I demanded an EEG – 2.5 years after I noticed the first tremor.
As you know, adding other medical issues into the mix makes it even more difficult to tell if the behavior is seizure related. My daughter has sensory issues and possible ASD. She also lost speech for six months and considering the location of her seizures her loss of speech c/b seizure related. Besides the loss of speech she was not developmentally delayed so the ped kept telling me she could not be having seizures.
I’m not sure where you are located but you mention Mayo…Our current nuero is at Mayo – she also specializes in metabolic disorders. (PM me if you want her name.) Our first two were at University of Chicago. After our Oct appointment we will be making the decision to continue the trips to Mayo or switch back to a Chicago or Indy hospital. I would like to find a nuero that will consider lessoning my daughter’s meds. (Both of my children see neuros so we’ve had to do a little changing over the years.)
Go with your gut. I allowed the pediatrician to talk me out of my suspicions – partly because I wanted to believe she wasn’t having seizures.
One more thing…You can ask your ped for an order for a 1 hour EEG and have it done locally. Many times seizures won’t show up on this type of EEG but if they do, which was our case, I think you can get in to see a nuero sooner. Originally we were told there was a six month wait for my daughter to see the neuro; and my son was already a patient! Once we sent over the EEG results they saw us within the week.
Sorry for the long post!