We had a follow up aptmt with the neurologist, where he was supposed to have results of Andrew's EEG, Sleep study, blood work, and complete an Autism assessment. My dad and I were met with an uprepared physicians assistant who had no test results and completed the CARS- an autism rating scale in 5 minutes. I was very disapointed because the assessment tool was not used appropriately and I felt like I knew more than he did about the actual disability. What a waste of an afternoon! He did go over the sleep study results, also questionable in my mind. Andrew was having a difficult time with asthmatic symptoms during the sleep study and coughed for what seemed like hours. I didn't feel like it was an accurate picture of his sleep, but now they are referring us to an ENT to look at having adenoids and tonsils removed. I haven't scheduled this because I'm not sure that is the answer to any of his problems. I guess it wouldn't hurt, but it seems like they are just looking for another surgery bill. I have read that many children on the spectrum are being referred for this surgery but that it really doesn't help any of them. One thing the P.A. didn't go over with us is that a referral to a cardiologist was recommended from the sleep study- what? and why? His pediatrician called last night and tried to explain to me, but I am not understanding this. It's all about $$. I hate to think that his Autism diagnosis was completed by someone so incompetent but The ThoughtfulHouse charges $500. Yikes!
On another note- we went to a support group last night. It was downtown, definitely not as nice as Dallas or Austin. This is the first time we went somewhere south of 410, except for weekly trips to Whole Foods. The presentation was for school age kiddos, so it didn't really apply, but it was nice to see other families and to mentally prepare for what's ahead. Maybe we are just really ahead of most parents with kids on the spectrum- because I haven't met any other ones Andrews age.
We are getting set up for ABA therapy. He has an evaluation on Oct.9th for ABA at Treehouse Pediatrics- they work primarily with kids on the spectrum. They are recommending 4 hours a week of ABA at $1200 a month. Another Yikes! We wish our insurance would cover this but none of them do. My heart really hurts for all of the children that will never have the opportunity to receive these services, but thanks to great family we will have support. He also has a Physical therapy evaluation, OT, and ST-speech eval on the 8th at Warm Springs Rehab. They are suppossed to be the best clinic in town and I feel like they might be able to help more than Easter Seals our Early Childhood provider.
Please pray that God will continue to provide financially for us through all of these services because we will go into debt if we have to. I knew I should have taken that Financial Peace class at Prestoncrest before we let Dallas. Please pray that we have made the right choice in clinics and therapists and pray that Andrew will be free from pain. He seems to be crying a lot lately and falling all the time. I'm afraid I might get turned into CPS soon if the PT doesn't start providing services soon. Oh- and Pray that I don't go crazy from all of this stress.
Rett Syndrome. One year Post Surgery
3 months ago