Age: 1.0
Sex: M
Vaccine: HEPA, HIBV, PNC13
Symptoms: Somnolence, Staring, Teething
Clinical narrative: Patient had been sleeping well, healthy, eating a ton and all was perfect and welcomed after ten months of colic and reflux. Here is a timeline of what we/others have observed. April 26th: Completely stopped Omeprazole after cutting his dose down, handling it well May 1st: Had his 12 Month Well Child appointment. Was given vaccines and a finger prick to check lead level and hemoglobin. (Hep A pediatric, HiB PRP-OMP, Pneumococcal Conjugate-13) As expected, patient didn't sleep well but the week following his vaccines was terrible. He'd wake every three hours or less, eat, sleep for an hour and wake, need a bit more to eat or just held and back to sleep. He is getting zero "good sleep". He seemed so restless. May 5th: Our babysitter, shared a video that she found a bit odd. She said patient started staring and his eyes were rolling for a minute or two before she became worried and started take a video, catching the end where it wasn't as bad as when it first started she said. I was a little concerned but felt in this video that he looked sleepy, which he hadn't been sleeping well, has been teething, post vaccines, and possibly going through a growth spurt/milestones with increased walking and talking. His episode was around 8AM, before a nap and in the kitchen high chair. May 5th: Patient started to roll his eyes when a stranger talked to him at his brother's soccer game. I immediately picked him up and he wasn't doing it. It was so quick that I couldn't decide if it was even anything to worry about. It was around 6:30PM, so around his bedtime. May 10th: shared another video of patient rolling his eyes/staring. This one was alarming. He doesn't look like himself, and I know from this video that he's not being silly. This happened around 9AM before a nap, in the kitchen high chair. I called the pediatrician's office because I was scared and wanted patient be seen. May 11th: Dr. watched the footage and told me that the second video was definitely more alarming than the first. He said he can't say for sure that they're seizures, but they look like they could be. He recommended a referral to a neurologist. He even mentioned that he wanted patient to have the best and felt a pediatric neurologist was the best choice. The ball was immediately rolling for a referral. We completed his baseline blood work with the HHH lab right after this appointment. I feel very strongly that a pediatric neurologist see my son. We're talking about an undeveloped brain and I would like a specialist who spend his/her time studying the child brain. May 12th: patient had another episode at babysitters. It was at 2:52PM and lasted about 30sec and in the kitchen high chair. I'm absolutely terrified. I called doctor's office and employee said we did get approved for one visit to Pediatric Neurologist (THANK GOD) to take a look at patient. I also found out early morning that patient's baseline lab work came back normal for his age. May 17th patient's sleep seemed like it was back to normal for him. He went down at 7:00PM and did not get back up again until he wanted a bottle. He went back to sleep shortly after the bottle. He has had another day or two of being back to normal with his sleep. May 18th patient's knot from his vaccines is finally almost gone. I can't help but wonder if patient had a side effect from his vaccines. How can we prove this? Will he be safe from future ones? How do you determine a candidate who should not be given a vaccination? I'm extremely worried his next one could do worse if he is having seizures caused by a side effect of shots. May 19th patient slept well last night. We have our first visit today. I'm hopeful we'll have a thorough examine, including an MRI and EEG to be safe. May 19th Our appointment went well. We were listened to and all of our questions and concerns were addressed for now. Dr. said the videos (the second and third especially) indicated that these could be seizures but not necessarily due to epilepsy? He supports that these COULD be isolated incidents from his vaccinations due to when this all started, but there's no way to prove or disprove this. We will never know unless patient has epilepsy. He heard our concerns on what if he has epilepsy? What if it's vaccine related? Should he not get vaccines? What if you put him on meds and he doesn't need them? How do you know and decide what meds to use? Will you please do the MRI to rule out a brain tumor so I can have peace of mind? He was very nice and said he feels patient is in no immediate danger. We have a plan of action. We have a scheduled EEG for Tuesday at 2PM. He said it will only take 30min to complete, we don't have to sleep deprive him, and it WILL show if he has epilepsy or has had seizures. If it comes back normal, we follow up in three months. We would conclude it was an isolated incident possibly from vaccines and it IS ok to continue with future vaccines but with closer monitoring. If it's abnormal, we would start medication based on what he finds and possibly an MRI. He will know if an MRI is needed by the specific results of the EEG. Basically the EEG will determine anything from here on out and just have to have that done before any further conversation can take place. He gave us his personal number and we have to call with any more episodes. He told us when to call 911. He called and ordered the EEG right in front of us and pushed it to get him in ASAP. He told us he would log on and watch the EEG live himself and we could skip the appointment and just walk to his office and he'll read it to us and we'll go from there. He basically said we have to get this EEG in before he can say much, but he did offer the reassurance that patient is young and there's a good chance he'd outgrow this if it is something and the fact that it started post vaccines and he hasn't had a seizure in a week is a good sign it may have been symptomatic and be may be over it. We just have to get this test in before we start asking further questions. This is definitely scary but for now we have peace of mind that all the appropriate measures are being taken and in a timely manner. Thank you for the prayers! While we are still worried sick and watching patient like a hawk, we feel like we can breathe a little better while we work through this. We'll have more to update after Tuesday. May 23rd EEG was done. All is clear and normal. Dr. said no need to do an MRI because the EEG would have shown this. For now we just continue to monitor him and follow same plan of action of when to call 911. We report all episodes to him. June 3rd 1:10PM On Saturday, patient was standing and looking at the crowd at a birthday party. He was standing and started staring. As soon as I saw that I began watching just in case (I first thought he was just staring at all the excitement) and then his eyes started to droop like he was going to fall asleep. I grabbed my cell phone to record it, but then his eyes began rolling really bad into the back of his head, while he was standing and not responding to me calling his name. I got scared because it was MY first time seeing it in person so I grabbed him and held him for a moment. When I let go of him to look at him, he was perfectly fine. We didn't get video of Saturday's episode because of me grabbing him. We called Dr. He was willing to see him in the ER, make an appointment, start meds, have a 24hr EEG done, etc. We had much discussion. We decided if these seizures were not hurting him and only staying this "small", we'd prefer not to have him on meds until we get to know him/this more. We decided if he had one more episode, we'd do a 24hr EEG to see if there's a slight chance anything could have been missed. I'm exhausted and so scared. How do I make an informed, educated decision for my child. I fully support vaccines, but how can I confidently get him more? There are statistics and someone's child out there has to be a rare one. I'm so scared it will be mine. June 5th This would be patient's 5th "episode" this morning. He started drooping his eyelids like he was tired so I got my phone ready. This is what he did. As you can see, it's hard to be sure this was anything because he seems responsive. He even smiled at one point.