On Monday I called the neurologist office to get the results of David's MRI and EEG. Unfortunately, the doctor was not in but his results were there. The nurse quickly looked at them and decided to give me the results over the phone before the doctor had reviewed them. Sadly, I this is a choice we both regret.
David's EEG was normal which means no abnormal patterns suggesting seizure activity were picked up during his short EEG. Of course not. This is David's third short EEG and he has never had a seizure or seizure activity during one, however over the past 9 years we have continually had periods of concern that he does in fact have seizures.
David's MRI showed no masses or structural abnormalities, nor did it show any signs of seizures. Unfortunately, the report did indicate that there was a mild spread out cortical atrophy (that would be a mix of her words and mine because I was in such a state of shock I went a bit numb). "What does this mean I asked?" the nurse advised me that she didn't know exactly but did share with me that it was spread out, cortical referred to his brain cortex (no shit), and that atrophy means shrink (again, no shit! Oh and you left out the fact that it is shrinking because it is not being used which is kind of like dying!!!!-- OK I admit to being in freaked out mommy mode at the time and to many people's surprise I did hold it together and not tell off the nurse for putting me in this state of panic). She also stated that the report noted that this might be due to extended periods of time on anti-convulsive medication (Depakote). One problem... He has only been taking Depakote for 10 months. Not really what you call an extended period of time. So at this point she has no answers. She clearly feels like crap, because she can tell by my voice that I am now scared shitless and there is nothing anyone can do but wait until the doctor can read it the following day. GREAT!
The next day I did speak with the nurse again who apologized profusely, and then reported that the neurologist had spoken with the radiologist who had read the MRI as well as reviewed the MRI himself and felt their was no issue, thus his MRI was considered normal. Since his next neurology appointment wasn't for 3 weeks and the plan had been to make a medication change following the results of the EEG and MRI as well as possibly completing a 24-48 hour EEG and considering I still wasn't feeling great about the MRI results we got an appointment to see the neurologist the following day (somehow I think the nurse felt bad for me and got me is asap).
When we saw the neurologist he did explain that David's MRI was normal. Apparently the doctor who had read his MRI does not usually read children's MRI's and there are difference that can be noted between children's and adult's brains. The neurologist reviewed the MRI himself and said everything was fine. Furthermore, he said David has not been on the types of medication that were being suggested in the report because they refer to 1st generation anti-seizure medications and Depakote is not a 1st generation med. We did agree to change David's medication which will take 2-3 weeks to get to a therapeutic level and he will likely be out of school during that time. We also decided that we would go ahead with the extended EEG, which will have to be done in the hospital.
We saw the psychiatrist on Monday just after my horrible results phone call and David's psychiatrist decided to try to keep things simple. We weren't seeing a lot of effect from the latest medication change so we decided to stop it and not add anything new until we could get through adding his new medication with the neurologist (which should help both seizure activity and behavior/mood). Unfortunately, his behavior was immediately devolved and the neurologist suggested adding his ADHD medication back, which we did. We then spent 36+ extremely long hours while David refused to sleep because he wasn't tired. Endured him acting out aggressively to himself and others, and endured constant screaming and yelling. Believe me NOT my idea of a good time. After talking to the psychiatrist we are going to start another medication, however he wants to clear it with the neurologist because we start it so in the mean time we are utilizing one of David's other medications to help as well as lots of melatonin to aid in sleep. Hopefully we will be able to find something that will help so that we all can get some good sleep.
For now we are waiting for medication to build up and kick in and scheduling a time for David to be admitted for his extended EEG.
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