Mar 04 2009
getting help
We met with the Dr in charge of evaluating Kylie and we learned alot from her. She says I am a strong advocate and to keep at it! They want Kylie to have everything! A therapeutic staff support person, Behavioral Specialist, Mobile Therapist. Total hours they are seeking are 30 hours. It may take up to a month for the TSS but that’s ok, at least we have the ball rolling. The Dr who evaluated Kylie wants me to put a call into the neurologist and even though her neurologist’s motto is “Treat the patient, not the EEG” obviously there is something neurological going on with having an abnormal eeg, behavior and sleep. The Dr believes yes she has autism but she also has something neurological going on as well and that her behavior is post-ictal with her stares and needs to be looked into more. So that is where we are with that. I’m hoping to get back in touch with the doctor and see if from one professional to another they could discuss things. I just feel as though we aren’t being taken seriously and because it took so long to get the diagnosis of Autism as well as the Noonan Syndrome.
It’s what they want to reach for is 30 hours so here’s to hoping she gets it. We figured how we would split up the hours etc. She listened to all of Kylie’s history WITHOUT ignoring every little thing and writing it down. In the end though she feels as though neurology needs to step up their game. And she said I know you are seeking this 2nd opinion but she said I think you need to be seen again and not wait til July. July is when we are scheduled to go back to neurology. Currently, Kylie is on 3 MG of Melatonin. She has gone from 2 hrs of sleep to 10 hrs of sleep. Keep in mind this was a child that used to sleep 2 hrs and could go in 18 hrs. We used to take sleep shifts and no more of that even though at times we may hear a faint noise from her, she does fall back to sleep. It could take up to 2-3 months before we see any full benefits.
