Miles O’Donnell

First post: Jun 16, 2021 Latest post: Sep 1, 2021
Welcome to Miles CaringBridge website. We are using it to keep family and friends updated in one place. Thank you all for your prayers, love & support during this time. We appreciate you all so very much. I will try to do a brief summary of what’s been going on thus far...

March 25-Miles received ALL of his 6 month shots (I will try not to go down that rabbit hole of what if’s but it’s hard to not cling to that being the reason all this started)
April 5, 2021-the day it all began. Miles woke up from his morning nap screaming bloody murder, As if he was hurt. Screaming & crying for him is very rare because he is honestly the most pleasant little babe in all the land! I felt something was off. He would cry and then fall back asleep in my arms, as if he was having a night terror and wasn’t fully awake. this continued for 15minutes or so until the periods of him falling asleep became harder to get him alert to open his eyes. I sat him in his bumbo seat while I made a bottle. I looked over and saw him loosing neck control and his head bobbing all around and he had his eyes closed whimpering. I picked him up and tried to feed him and he wouldn’t take the bottle. As I sat there and starred at him he began to lose all the coloring in his face and became grey. I was on the phone with kelly at the time who told me to put him in the freezer to try and wake him up 😂(had to add some humor in here somewhere). I immediately called 911 and ambulance came. He was awake by that time but his eyes kept rolling back and he was VERY out of it. While In ambulance they were strapping him down, taking blood pressures, pricking his foot and he didn’t move. He just laid there starring straight ahead. He would not track my voice with his eyes. It was the scariest thing I have ever experienced. we went to York hospital where I stood in a hallway for 8 hours with nothing but a diaper bag in hand. They ran CT scans, blood work, EKGs & ultrasounds. Everything came back normal. We then got admitted because they wanted to monitor him overnight. they did a short 30minute EEG the next day and that was also normal. We left with a diagnoses of “BRUE” (brief resolved unexplained event). It was a whirlwind of emotions. With all the tests coming back normal, I should have felt relieved but I didn’t. I was a worried, anxious mess. Days went by and Miles seemed fine. Back to his sweet smiling self. I forget the exact day but he began to arch his back while on changing table. By the end of April I noticed his first weird movement. A head drop. I was actually taking a video of him playing when it happened so luckily I got it on my phone to show the doctors. Pediatrician was shown back arching and two head drops and said it looked like normal baby behavior. Days passed and again I witnessed more weird head movements. Some head tilts to the right side. Back to PED we went. She finally referred us to a WellSpan pediatric neurologist. He saw the videos and one of them was enough to put him on a longer EEG. So in May we did a 24 hour video EEG AT HOME! That was a wild adventure to say the least. That test again came back normal. He only did back arching while hooked up so he did not get head drops recorded. He said I should be relieved and know that Miles is fine. Fast forward to end of May head drops continue to pick up in frequency. Now the Back arching was most of the time while placed on his back. I couldn’t help but feel in my momma heart something was NOT right, still. May 24th I think, he got his first NASTY cold (the Grammy cold as we called it). For two weeks of the cold his head drop episodes skyrocketed. He was having 20-50 a day. He seemed very out of it a lot of days and stopped saying momma and dada. And also stopped rolling. At this point I I knew we needed a second opinion. We got an appt with the epilepsy specialist at Hershey. I drove up Wednesday morning, showed her ALL my videos and she immediately said I hope you have bags packed because I need to admit him to the hospital right now. She thought myoclonic seizures, Possible infantile spasms. My heart sank and I was flooded with emotions in that moment. Finally, I was heard. My momma heart was right, something was off, but at the same time you don’t want to be right in these circumstances 😔. It was a hard day to say the least. we headed to ER where they covid swabbed him and stuck him with 3 IVs. Got admitted to acute care floor where we saw Dr.Naik, the pediatric neurologist. He set us up on a long 3 day EEG. Multiple head drops were recorded but the EEG never changed. It is very clear to see he’s having spasm like movements but having the clean EEGs makes it tricky to diagnosis what is going on. He told us some doctors would prescribe meds anyway even with a clean EEG because they can clearly see the movements. But the drugs they use to treat infantile spasms are INTENSE. They have SERIOUS side effects on children. He was not willing to treat for IS (infantile spasms) unless he saw hypes on the EEG. He wanted to rule more things out with an MRI (which is where we are today). He told us we may be back regularly for EEGs to make sure the brain waves DONT change and became problematic. As of now we have a temporary diagnosis as Bengin Moyclonus of infancy until we get MRI results. This is an imitator of IS. kids with this eventually outgrow spasms and no treatment is needed. He was hesitant to give this as THE diagnosis because of Miles regression during the two weeks of high frequency head drops. Since the hospital they slowed down which he said should happen if this was truly the benign myoclonus. since the hospital he’s been very up and down. He has had great days with only 5-10 a day or bad days where he’s doing some movements in clusters and head dropping 20+ times in an hour. everyday has been different. He is currently in PT to help strengthen his upper body. Doctor said he has low tone, more of a 4month old than an 8 month old. He has a lot of work to do in PT to get him where he needs to be age appropriately for milestones. But we believe he will get there in no time with all the work he is going to put in at “the baby gym” we call it! 💪🏻.
Dr.Naik comes back to town Monday and will be in touch with what he thinks we need to do based on the weekly updates we have to give him. Last time I spoke with him he said he wanted another quick EEG just to make sure nothing has changed. So I will update when I know more about that. In the meantime, we wait for MRI results. They should call by end of day or tomorrow they said. But we all know how I am, I’m sure I’ll be making a phone call before the end of the work day. I’m a Very impatient, crazy momma bear over here! praying for answers for our little man 💙

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