June 30, 2013. I was in the process of switching pediatricians to another healthcare system completely, out of frustration after reporting these symptoms to no avail, when we witnessed what really appeared to be a seizure. Chase woke up in the middle of the night screaming like we had never heard him do before. Tom and I both ran into his room, Tom picked him up and he projectile vomited. After that, he had several of these head drops, but then started convulsing or shaking for a good 10 minutes. We went to the emergency room that morning and the ER doctor (who just told us how healthy Chase looked and didn't seem to care about anyone unless they were near death) said “Yep, this probably is a seizure”, as Chase had more of the head drops right in front of him. He told us we should order the normal seizure workup of MRI and EEG tests, but no one could help us because it was the weekend and these were scheduled tests. We happened to have an appointment with a new pediatrician the next day on Monday, so he told us to have that doctor order the tests. The episodes continued to happen throughout that day, more than they ever had.
At the appointment the next day, the new pediatrician told us this probably was not a seizure but a nodding disorder that Chase would grow out of, and a separate tear duct issue. We almost had to convince him to order the tests anyway and obviously we were not impressed with the treatment we received or lack of urgency. There was one practicing Pediatric Neurologist in Fargo at that time, and we could not get in for an appointment for 7 months (!!!) to see her because Chase was not diagnosed with seizures yet. A new Pediatric Neurologist would be starting in a few weeks and we were told that maybe we could get in to him sooner. Slowly we were worked through the Sanford hospital system the next couple of weeks. Tom and I were panicking, as Chase’s development began regress. He stopped crawling, eating solid foods, and was very lethargic, lying around in a daze. We knew this was just not right and things were going really badly, and we felt like no one would help us.
At the appointment the next day, the new pediatrician told us this probably was not a seizure but a nodding disorder that Chase would grow out of, and a separate tear duct issue. We almost had to convince him to order the tests anyway and obviously we were not impressed with the treatment we received or lack of urgency. There was one practicing Pediatric Neurologist in Fargo at that time, and we could not get in for an appointment for 7 months (!!!) to see her because Chase was not diagnosed with seizures yet. A new Pediatric Neurologist would be starting in a few weeks and we were told that maybe we could get in to him sooner. Slowly we were worked through the Sanford hospital system the next couple of weeks. Tom and I were panicking, as Chase’s development began regress. He stopped crawling, eating solid foods, and was very lethargic, lying around in a daze. We knew this was just not right and things were going really badly, and we felt like no one would help us.
 |
| On Father's Day- June 2013 |
No comments:
Post a Comment