Tuesday, July 30, 2013

11 hours....A dash of hope.... And random flying objects

After many months of trying to get Haley's behavior under control and med switches we finally decided to make the journey to Cincinnati Children's Hospital to see Dr. Erickson. I definitely have to say that he is one amazing doctor and it is one amazing hospital.
Quick background, Haley has been diagnosed since she was 8 months old. Been on anti-psychotics since age 2 1/2 for aggression. We have tried countless other meds and she has been hospitalized twice for psych stays. Most recent a year and a half or so ago. While I have nothing against the psych doctors she saw here they were not "competent" (yes I used that word and yes I mean it) to help her. After recommending what I considered an outrageous med change I asked our Fragile X doc in Cleveland to get me a name of another psychiatrist for a second opinion. (I love our Fragile X doc, just to clarify she does not prescribe for Haley, after her admission to the hospital she did not feel comfortable doing so with the different meds they had put her on) After contacting Dr. Erickson and getting his opinion I convinced her psychiatrist to change her meds on a trial basis to see if we could get her stable enough to get her down to Cincinnati. (you should have seen the doctors face when I took her in after the med change, shock and awe, she was a completely different kid)
For the first 4 1/2 hrs......
She was pretty good. Thankfully at 4am its dark and she likes the dark. I was hoping she would sleep but no, of course not. We couldn't get that lucky.
When we got there I was nervous because she is very unpredictable, my boys I can read pretty well, but she is very deceiving. To my surprise though she loved the waiting room.
just plain silly

pretend annoyed

 pretend mad face
During the appt however did not go so well. She did not cooperate, nor did I expect her to. (would you after being up since 3am cuz I wouldn't) He did get to check her muscle tone but that was it Donnie had to take her out so we could actually talk. They did have the child life dept bring in what I can only describe as the Lamborghini of sensory machines. (literally the size of a refrigerator with a water tube in the middle that had bubbles and balls going with lights and fiber optics coming out and a light projector on the top, If I could have fit it in my van I would have) BTW child life is awesome. I have never had the experience of working with them before but it was great! 
               We discussed several options for medication and came up with a pretty sound plan of treatment I think (with Haley you never know since she never responds like I think she will). Then he asked if I had any other questions. Well number one on my list puberty. (I don't want to see her with PMS) Thankfully there are plenty of options. Number two and my number one concern, what are the chances of her being institutionalized? Why am I asking now? Well, good question, she is only getting bigger and stronger and I am not. If her chances are high then I need to start researching now because I like to be overly prepared for every possible situation if I can. (I obviously do not want this for her but I am a realistic person) Thankfully he is optimistic and said that he honestly believes he can get her behaviors under control and that he doesn't see that happening with her. ( I on the other hand am cautiously optimistic) Overall a productive visit. We go back in 6 months with follow-ups in Cleveland.
The ride home however was not good. She made it halfway before random flying objects began coming forward towards our heads. Anything and everything she could find. She even tried to rip the seat belts out. (which I have to say was kind of interesting to watch) We had to find a spot to pull off and "extract" her from the car and move her to the back and clear everything we could. (picture us on the side of the highway doing this it had to have looked pretty entertaining) The screaming is the one thing we couldn't stop which I really need to find a remedy for before we go again for my sake. If there was any plus side to the ride home I got to see this:
Mansfield Reformatory, the prison from the movie the Shawshank Redemption. Disclaimer: It was on the way and we did not get out of the car we just drove past so please don't think put Haley thru any more stress (I just really wanted to see it).

Overall Haley did better than I thought she would, Donnie said she did way worse than he thought she would. I just told him that was because he doesn't go to enough doctors appts. Hopefully next time will be even better and I might just have to install one of those cage things that police men have in their cruisers to block anything being thrown at me just in case.

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