buddy
New Member
Q has had a few issues for the last couple of days and once again it i s on the last 2-3 days of the patches which are supposed to last 7 days. both the ER psychiatrist and ours said they usually rx for every 4 days for this purpose....for some reason, some people's bodies just dont let it keep working for 7 days....
So I followed that direction starting a couple of weeks ago and what do you know, much better, no full out rages and last week at school they said he had two days with ZERO behaviors of any kind and no aggression all week. (for them, we had a few transition issues but again much briefer and we could get out of it).
So the doctor called and said they have appealed it to the highest appeal and insurance says no way. Go back to 7 days, nothing they can do. But now we have used more than we should and they only supply a months worth. So before the refill day we will run out....
I did find two patches from when he was in the hospital so w e will get pretty close, and will have to use oral until refill time. of course that means no m eds at night and waking up with nothing on board. those were our AWFUL mornings.
Today is day 7. We are still not doing any play outside in front of OUR house (he told them he never gets to go outside which they double checked with me and are not at all worried. I told them to go ask what he did today for nearly the whole day... duh...the zoo (our big zoo by us) so that is two zoo days in a row! yeah, the kid is out all the time.
But today after the zoo, about 6:30 pm he heard the kids outside, darn buggers were p laying right in front of our door and laughing and it sounded fun. He admitted he was jealous asked to got to he park. I said yes but I had to use the rest room and in that time he ramped up...by the time we got to the car he lost his mind. Swearing, he is going to kill me , himself, and he is going to give up, if he could just die and come back and start over not being autistic then he could play better and life would be better. I lied to him to get him into the car, agreeing to his showing me he could behave maybe he could roller blade in front when we came back. Finally got him in and I admitted we were off to the hospital. (he had grabbed me a couple of times but no hits, just threats which so far he has never ever followed through with). I wasn't waiting this time till I was full of bruises to go. I wanted to avoid 911.
I got him to take an extra Clonidine and we got there in about 25 minutes. He was s till saying to them that he wanted to slap me, but not to kill me and he doesn't want to hurt himself anymore. Then by the time we got to the behavior unit he was talking to me like nothing happened. no more perseverative statements, no more blurts, put his hand around my shoulder and it seemed like he had no clue why we were there. He could tell you but he just didn't have one bit of the behavior. HOW FRUSTRATING this is! They dont want to up the dose of oral medication, say it is too high, but obviously there is not as much going into him with the patch on those last days so giving extra oral is not upping it but making up for the difference.
At least that is what this ER doctor said. They said it is crazy because this happens (needing every 4 days for this purpose) all the time. THey said to contact the company, they would write a note too, and see if we can get them to give us the difference between what insurance will cover...I wont hold my breath.
This is not how I like to spend my weekends but if I change it during the week then there will be school/therapy days that it is not working as well. I'd rather it be on my longer days with him.
To make it weirder, the main highway into Mpls is closed so I got lost in not so great areas of MPLS in the dark and while at the hospital all the power went out in the neighborhood. So glad I had my cell phone, it was p itch black. The generators finally came on but only lights in some areas. THe parking ramp was pitch black. We joined two nurses when we left and walked the one on the highest level up to her car and she drove the rest of us. It was like a cave....very spooky and trust me, this is not a great area. Not awful but a few not so pleasant recent stories from the exact area there. I'd so much rather have a Sunday of church and a sunday brunch with family, whatever.... not in our world I guess.
da*n insurance company.
So I followed that direction starting a couple of weeks ago and what do you know, much better, no full out rages and last week at school they said he had two days with ZERO behaviors of any kind and no aggression all week. (for them, we had a few transition issues but again much briefer and we could get out of it).
So the doctor called and said they have appealed it to the highest appeal and insurance says no way. Go back to 7 days, nothing they can do. But now we have used more than we should and they only supply a months worth. So before the refill day we will run out....
I did find two patches from when he was in the hospital so w e will get pretty close, and will have to use oral until refill time. of course that means no m eds at night and waking up with nothing on board. those were our AWFUL mornings.
Today is day 7. We are still not doing any play outside in front of OUR house (he told them he never gets to go outside which they double checked with me and are not at all worried. I told them to go ask what he did today for nearly the whole day... duh...the zoo (our big zoo by us) so that is two zoo days in a row! yeah, the kid is out all the time.
But today after the zoo, about 6:30 pm he heard the kids outside, darn buggers were p laying right in front of our door and laughing and it sounded fun. He admitted he was jealous asked to got to he park. I said yes but I had to use the rest room and in that time he ramped up...by the time we got to the car he lost his mind. Swearing, he is going to kill me , himself, and he is going to give up, if he could just die and come back and start over not being autistic then he could play better and life would be better. I lied to him to get him into the car, agreeing to his showing me he could behave maybe he could roller blade in front when we came back. Finally got him in and I admitted we were off to the hospital. (he had grabbed me a couple of times but no hits, just threats which so far he has never ever followed through with). I wasn't waiting this time till I was full of bruises to go. I wanted to avoid 911.
I got him to take an extra Clonidine and we got there in about 25 minutes. He was s till saying to them that he wanted to slap me, but not to kill me and he doesn't want to hurt himself anymore. Then by the time we got to the behavior unit he was talking to me like nothing happened. no more perseverative statements, no more blurts, put his hand around my shoulder and it seemed like he had no clue why we were there. He could tell you but he just didn't have one bit of the behavior. HOW FRUSTRATING this is! They dont want to up the dose of oral medication, say it is too high, but obviously there is not as much going into him with the patch on those last days so giving extra oral is not upping it but making up for the difference.
At least that is what this ER doctor said. They said it is crazy because this happens (needing every 4 days for this purpose) all the time. THey said to contact the company, they would write a note too, and see if we can get them to give us the difference between what insurance will cover...I wont hold my breath.
This is not how I like to spend my weekends but if I change it during the week then there will be school/therapy days that it is not working as well. I'd rather it be on my longer days with him.
To make it weirder, the main highway into Mpls is closed so I got lost in not so great areas of MPLS in the dark and while at the hospital all the power went out in the neighborhood. So glad I had my cell phone, it was p itch black. The generators finally came on but only lights in some areas. THe parking ramp was pitch black. We joined two nurses when we left and walked the one on the highest level up to her car and she drove the rest of us. It was like a cave....very spooky and trust me, this is not a great area. Not awful but a few not so pleasant recent stories from the exact area there. I'd so much rather have a Sunday of church and a sunday brunch with family, whatever.... not in our world I guess.
da*n insurance company.
