Back in the last update, I mentioned that we were worried about LittleK turning blue at times. Well, between the blue spells, she also would have times where she would become "zombie" like and would walk into walls/tables/other objects and fall straight backwards and hit her head. We were in contact with her pedi here at home and the neuro team at Children's. Her pedi here said that the next time it happened to take her straight to Childrens.
Back on January 22, she had an off day at Mother's Day Out. We loaded up the truck and headed 2 hours away to get to Childrens. We didn't get past the ER. The neuro on-call, who didn't even come down to see us, said she was fine and wasn't going to change anything until our appointment in late March so they discharged us. [Let's just say we were less than pleased!] On the way home, we were in an accident which resulted in 4 ambulance rides and 4 additional ER visits just hours after our adventure started.
We have since been in contact with our pedi at home, and he was able to get us in with a new neuro (Dr. O) in just a weeks time. Dr. O changed her medication on February 3. While the new medication is helping with her social skills, it is causing her gross motor skills to regress.
She is back in therapy twice a week, however, right now, we are without physical therapy as our therapy center is between physical therapists. Her social skills have blossomed and her speech is exploding! She was making progress with the gross motor skills as well, but with this new medication that has stopped. We have adjusted the medication and in touch with the new doctor. We do have another medication to try if we can't get this all figured out. She goes back to Dr. O in April.
