Tuesday, March 18, 2014

Update - Medication and OT

So I forget if I said but Mike and I took it upon ourselves to down the dosage of Anthony's epilepsy medication and we have seen 100% better behavior.  He was having a toileting regression, acting super aggressive and crazy in general, and it's just so much better.  His OT told me tonight that she felt like he "was back", she said they had great communication and that many times he smiled at her and cuddled into her neck.

I feel so glad, despite the fact that the scumbags at Anthem BCBS have denied our appeal, or at least this step of our appeal, that he is back and is cuddly and sweet and having so much success.  As I type this, Mike is giving Anthony a bath and I fear from the sound of things that he is splashing water every where, which is SUPER annoying but I'm not going to worry about that right now.  It's just water.  When he was acting in such a crazy way two weeks ago, I was so sad, I felt like I didn't even recognize him, I am unfamiliar with the feeling of being scared of Anthony.

So yes, the insurance company denied our appeal.  They want him to just - go to school!  They are not there to cover educational expenses, which, um, we are not asking for that!  We have a medical doctor who has prescribed Anthony FORTY hours a week of ABA therapy and they are acting like we want them to pay for his summer camp or something.  They also said he appears to have slowed down on his progress, which really gets me right where I live, I think, screw you!  It's true that I can't see Anthony's progress on a daily basis but I know how hard he is working and we are working and his therapists are working and it drives me crazy that some asshole in some suit is sitting in an office, drawing a line through his name and just giving up.  I swear I am not a violent person but I would very much like to smack this "doctor's" face, the one who says that Anthony doesn't need ABA therapy anymore.  I mean, they are not even saying that.  They are saying he's not doing that well with it, he's almost nine years old, give up.  Give up on him and send him to public school because he is not making fast enough progress at his ABA therapy center.  I challenge anyone to tell me how that makes sense.

Wednesday, March 05, 2014

ABC's of Autism - Q

Q is for Question.  Or query.  My dearly departed friend LeBron used to make a joke, where he'd say "I have a little query", and then he'd say, but really, what prep school boy hasn't? Ha!  

I have so many questions about Autism.  And Anthony.  And now epilepsy.  And medication.  And life.  And state supported waivers.  And - just everything!  

Specifically, we are having the hardest time lately with Anthony.  I took him for a checkup at his neurologist and reported that he had had one 'breakthrough' seizure, which I guess means that it broke through the medication?  Anyway, he wanted to up the dose so we did.  Also, he prescribed Anthony a medication that is used for ADD, he said it would help him focus and that it would be great to see what Anthony could accomplish if he could focus on it.  I agree, of course, so we decided to do it.  

There were some problems.  He gave me a card which said that I'd never have to pay more than $20 for a copay but the card was expired so instead we paid $84.  We have to give it to him early in the morning because it wears off all day and this way maybe it wouldn't affect his sleep, or his appetite.  It was also more medication to give him and we have had a hard enough time giving him the seizure medicine, so it was a lot to add another 2 mls, even though that doesn't sound like much.  But we did it.  

It's been like two weeks and we are seeing absolutely no difference in a positive way from the medication.  Certainly we are not seeing 'focus', whatever that looks like.  They have been reporting from his school that he gets a little weepy and cries at around 1:00 each afternoon, but we haven't seen that on the weekends, so I think that is probably more related to school-related stuff.  Since we upped the dose of his epilepsy medication, we have seen a lot of aggression from Anthony and it's terrifying.  I swear I would rather have him have a seizure than raise his legs to kick me in the face, or pull my hair, or both at the same time.  

Last night I took him to OT, and it was a mess.  We were early so I said let's go get you a soda, which I sometimes do when we are early.  I wanted to get one for me too because I was so tired I thought I'd fall asleep at the wheel.  But the McDonald's drive through was all messed up, I left after a few minutes of un-moving cars and went to the Hardees next door, but there appeared to be some kind of a problem THERE too, and anyway we were late.  Also, Anthony squooshed his soda all over him, soaking his shirt, underwear and pants.  I had everything in the car so I tried to bring him inside to change him and that's when he kicked me and then he slapped me.  I mean.  That makes me really mad!  I am turning myself inside and outside every damned day and he's going to HIT ME?  Really, I said?  REALLY?  Then I got a hold of myself and said, Anthony.  You can't hit me because we have to go inside and go see Amy, so let's go, and he did.  Then he peed all over his new clothes five minutes later and at this point I just wanted to go home.  He was CRAZY, like some kind of jungle boy.  Amy, his OT, said no, he really needs to be here when he's acting like that, which I really appreciated.  Every time he acts out or something happens at his school, they call ME to ask me what's going on to cause it and I'm like, really?  How the hell would I know?  I never see him and when I do he is pulling my hair!  I mean, I know they are not blaming me but it feels like it to my paranoid mind and it was a great relief last night to have someone try to help me.  

Soooo, I put him back in his soda pants, which were at this point better than the urine pants and that Amy got him completely calmed down and sweet and back to his normal self.  Mike and I decided that we aren't going to give him the ADD medicine anymore, I mean, what is the point?  It's not doing anything but hurting him if he is taking a medication that doesn't work, right?  We also decided that we are going to go back to the original dose of the epilepsy medication and see if we see less aggression.  If you google aggression in autism, what you will find is a lot of recommendations for Risperdal, which is an anti-psychotic medicine and has a million side effects, ranging from weight gain to, oh, early DEATH, which, COME ON!  Personally, I think that what Anthony is dealing with is the anxiety caused by not being able to TALK in a world of TALKING and it is bringing him down and he acts out by jumping, climbing, slapping, pulling hair, kicking, etc.  Mike and I have to figure out how to control it so that we can win in the race against time wherein Anthony gets bigger than us and starts hurting us, or God forbid, the girls.  

The thing is, I really think getting Anthony his service dog would help, a lot.  But there are more than 60 people on the waiting list for dogs and I don't know when we'll get the call so I have to do something in the meantime.  I haven't even mentioned it to Anthony's neurologist because I know that I would come across like some crazy dog lady or something, suggesting we replace medication with a dog's love, but I honestly think it would help.  

But again, there is no one to help us.  No one to guide us, only medical professionals to suggestion things that I know won't work but I do anyway, because I am so desperate for help.  For the first time in a long time I am really scared about what is going to happen to us.  When Anthony acts like he's been acting, tearing the glasses off Mike's face, laughing maniacally as he kicks me in the throat, I think, he can't live here.  He can't live with us and be like this.  It is a terrible thought and I don't want to have it but I have to think of everyone here and in order to do that, I have to think if one of the people here is kicking the ass of another person, something has to be done.  So we will try, but man.  I really wish we could get some help.