Honey, why did you do that? What did it feel like before you did it? How do you feel now? These are questions I started asking Sydney back in June when I first noticed that she was exhibiting abnormal movements and behavior. Her eyes would VERY momentarily fixate on a spot, she would slightly tilt her head down and then came a head/shoulder/upper body jerk. It looked like a tic, which was initially what I thought they were. At first, I just watched her doing it. It was intermittent at best, but then it rapidly increased in frequency. By the end of June, she was doing it almost all day. We went in to see her PCP and based on one of the videos we had captured of the activity, her PCP referred us to neurology. Because of the long wait to get in to see a neurologist, her PCP went ahead and ordered an EEG exam because she was slightly concerned about some eye movement she saw in one of the videos we captured. She told us that it was more likely to be tics than anything, but she was not 100% convinced and did not want the wait to get in to see neurology to delay figuring this out. The EEG was abnormal. ABNORMAL. To be honest, I was not expecting this. At all. I was prepared to go in and be told her EEG was normal and that Sydney was experiencing some random tics (that can still be problematic but that would resolve on their own). And it wasn’t that at all.
Fast forward to going to see a neurologist in the Texas Children’s Hospital (TCH) system. We were fortunate enough to get in to see a neurologist right after her first 45 minute EEG. By this time her abnormal movements and behaviors had decreased dramatically and she was hardly having any of her staring spells. We saw the neurologist, we showed her the videos we captured on the phone, and she took a detailed history. After all was said and done, the neurologist told us, “I probably wouldn’t have even ordered an EEG based on what I am seeing and hearing today.” While I understood what she was trying to say, that statement really irritated me. She also told me that “you or I could be walking around with an abnormal EEG.” Again, I really did understand what she was getting at but her delivery was insensitive and unappreciated. I was too annoyed at the time, but I should have asked her to tell me what the exact incidence of “false abnormal” EEGs is worldwide and in her practice. But regardless of what she “would have done,” we were beyond that. An EEG had been done and it was abnormal…so it needs to be addressed. *insert eye roll here* The neurologist ordered an MRI and told us based on the results of the MRI we would need to start anti-seizure medication after seeing the results. Fast forward (because I am trying to get this all in for you guys) and the MRI was completed and we were told it was negative/normal. When I called to follow up with her neurologist about starting medication, she told us that she did not think medication was required and again repeated that “anyone could be walking around with an abnormal EEG and not know it.” I am particularly annoyed at this point because in her office she said that we would need to start medications if the MRI did not show anything and now I was getting a different story. She also said we would need to have a 24 hour or longer EEG. So, TCH scheduled her for their first available inpatient EEG…..January 2020. There is not an eye roll significant enough to convey how dismayed and annoyed I was at this broken system. I just want to know if the ordering neurologist would be willing to wait 6 months to find out if her child was having seizures or not. Somehow, I kind of doubt it. Remember, people…I am a nurse. I work in this broken system and it is heartbreaking. When I tell my patients I can relate….I mean it.
Because in the ridiculous delay in treatment through TCH, I decided to see another doctor through Memorial Hermann/Univ or Texas System (MH/UT). I found an epileptologist, had an appointment within a week and an inpatient EEG was performed at Children’s Memorial Hermann within a 2 week time frame.
Fast foward more. The in-hospital 24 hour EEG performed was abnormal. There was that part of me that hoped the first neurologist was right…that the initial EEG was a fluke and this one would be normal. Not the case. The epileptologist was ready to start medication based on her history, symptoms, and EEG. I was not ready to start medication. I am not anti-medication, but I do not take starting anti-seizure medications lightly. I have seen the side effects of these medications. I want to make sure if we start, we are starting for the right reasons, with a game plan in mind and not just starting to figure it out as we go along. I cannot and will not gamble with my baby’s health that way. The epileptologist with MH/UT was extremely patient and understanding and she told me she understood my hesitation with not wanting to start medication. She ordered a 72 hour ambulatory EEG which meant the EEG would be done with video monitoring at our home. More stuff for Sydney to get hooked up to. YAY. NOT! She was not going to be happy when she found this out. The EEG was set up, completed and we followed up with her epileptologist. The EEG was abnormal. AGAIN. 3 strikes, Erin. 3 STRIKES…YOU ARE OUT. No more denial. No more pretending this is not happening or that this is a mistake. It is happening, so buckle down and prepare to deal with it. This is my pep talk to myself. I feel sick to my stomach…not because it is something life shattering. Her life will continue and she will go and be great. But because there’s a new world of unknown that I have to try to navigate. Because my daughter will now have to deal with things she would not have had to deal with otherwise. Just disappointed. But I am always SO encouraged by my baby’s resilient spirit. For everything she has gone through, she is the toughest little cookie. She has handled everything so well. Perfect, no. But with as much grace as one can expect from a 4 year old.
So, here we are. 3 abnormal EEGs in the process, one negative MRI and a diagnosis of epilepsy. She has most of her abnormal discharges coming from her right occipital lobe, but also has abnormal firing midline frontal lobe. The doctor suggests she is having complex partial seizures also known as focal seizures. The video monitoring has not been able to be correlated with certainty because she did not have any of her abnormal behaviors during her EEGs. But based on other things we have reported her to be doing, the doctor feels strongly that she is likely actively seizing and we need to start medications. And I STILL do not want to start her on meds. I am struggling with medicating my child. I know it is something I have to get over. I want to see another epileptologist to confirm that they would initiate the same medication, but I would also like to further explore causation. I have SO many questions, but what I don’t have is time. I don’t know if my delay in starting medication will cause more harm than good. Right about now, I don’t know much at all. I’m just doing what anybody else would do and that’s hang in there as positively and best as I can.
I am sharing Sydney’s story because I know others out there can relate. I searched endlessly for stories like hers. So I could compare her story. So I could see if something else experienced the same things. To find other experiences with medications. I searched because it helps to know you are not alone. Although at times, it can feel like a big bottomless pit of loneliness…
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