OMG... What don't I love to bitch about??
Actually, I don't think I bitch that much, I work things out verbally... (Does that sound better?)
I've been working a lot lately. I got a second resource job, this one back in patient registration. People either treat me like I don't know anything, or that I should know everything since I've done the job before... 5 years ago, on a different computer system.
I long for a new car and some C4, so I can blow up the current one. We think we've figured out the problem, the starter, now I just need someone to have the time to help me fix it.
Burp has started Pre-Team in swim. He seems to be doing well, though we've only completed one week. His coach thinks the back stroke will be his "thing" but has told him he think he'd make a great water polo player. Burp is excited to go to practice each day, and that is all I care about. I think at this point in his life it'll be incredibly good for him to have something that he feels he's good at and gives him a niche, of sorts. He's currently going 3 days a week, for 45 minutes. If he gets invited to join the swim team it'll be 5 days a week for an hour and a half. I hope he still enjoys it when it gets that intense.
Still waiting to hear about the Charter School. Every appendage that can be crossed, is crossed. 4th grade was hard for him socially and academically, I just think that it would be so much better for him to be in a school that is made up entirely of his real peers, to be taught to his strengths, and for the teaching staff to specialize in autism. I actually can't think of a better situation for him.
We started him on a new medication. Strattera. He's still on the Concerta, as it takes 4-6 weeks for us to really know the effect of the Stratterra. His psychiatrist thinks that if the Stratterra works as well as he's hoping, we might be able to take him off both the Concerta and the Zoloft. Trade a stimulant and an antidepressant for one, non-amphetamine medication? HELL YEAH!! It seems to be working really well already, on week two. HOWEVER, his counselor still says wait and see. He says that often it will seem to work really well at first, then not so much later. However, even in these cases, it still seems to work better than the previous meds... I'm like, what the hell's wrong with that?.. a little better is still better. AND IT'S NON-AMPHETAMINE!!! The first week seemed to go well... and we just upped the dose of Stratterra, next month we'll lower the dose of Concerta. I'm kind of thinking about calling the shrink and seeing if we can lower the Concerta early, since it seems to be going so well, but maybe it shouldn't be rushed. I don't know.
It makes me wonder... I did a little research on the two meds, how and why they work differently... They are both re-uptake inhibitors, one of dopamine and the other serotonin. (to be honest, can't remember which is which) I'm a little irritated that it took this long to try a totally different med. (This is where the bitch comes in) From the very beginning, I've been saying that while I saw a little improvement, I never saw the improvement I expected to see. All they did was up the Ritalin, changed to Concerta (12 hour time release), then up that. Then shuffle us to different doctors because the current doctor wasn't comfortable with the high dosing levels. WTF? WHY WHY WHY WHY???????????? didn't we ever try a different med? Not til I throw a fit and demand to know why we've never talked non-stimulant meds do we actually get to discuss one. When I research stuff and ask about it, they brush me off, or treat me like another "internet self-diagnosing pt"... Doctors are supposed to give you the information to make informed decisions... What a joke. You know what happens to people who have an opiate addiction??? Their bodies stop making chemicals that cause you to feel joy and euphoria.. That's why it's so hard for an addict to quit. There have been studies that show that children given amphetamines when they don't need them, have this same problem.. But when they first prescribe this med and you try to ask if this could cause problems later, they don't talk about the oopsies. They tell you that children medicated with amphetamines don't become drug abusers, in fact, it's more likely that if they don't have them they will end up self-medicating with street drugs.... They don't talk about the consequences of long-term use of amphetamine medications when it's inappropriately prescribed. Unfortunately, that's something you find out about later. They just tell you that if it's not the right med it won't improve his condition. Well, what if the problem involves both chemicals, serotonin and dopamine, but one only slightly, the other more so.... Then you'd only see slight improvement... right? Now it seems logical to me... but they never gave me the information to logic it out.
I am so angry about the current system of this thing. In Oregon, the schools are in charge of initial diagnosis. The school psychologist diagnoses your child and gives you a piece of paper to take to your pediatrician. Your ped gives you meds... ONLY if your child seems to not respond appropriately to the meds do you see a psychologist, then a psychiatrist.. NO ONE ever gives you literature. NO ONE ever gives you something that says, "These are your options... this is what ADHD is" OR AUTISM, for that matter. Am I the only one who sees a problem with this system? I have BEGGED my son's doctors for a referral to the CDRC, so that he can have a complete analysis of his issues, and they keep saying we don't need it. OK.... My son is diagnosed with ADHD, Anxiety Disorder, and Asperger's syndrome. Considering that the first two are often misdiagnoses of symptoms of the third, don't you think that it's logical to get a proper evaluation from people who fucking know what they're doing? Especially since he had 3 independent evaluations for each diagnosis and the first two never picked up on the third? What if there is something else going on? They only evaluate for the thing you're asking them to look for. Does he have ADHD? Yes......... ok... does he have Anxiety Disorder? Yes........ ok... are you certain he isn't autistic?.......... "We find it very probably that he has Asperger's Syndrome"................................. "I'll second that diagnosis", "OK, *sigh*, I'll support that diagnosis too."
WTF? Is this really how it's supposed to be?
I don't know if this is a rant or a bitch... but now I'm really fucking pissed off, and need to go.
Subscribe to:
Post Comments (Atom)
2 comments:
One important factor that Burp has that other kids don't is a mother who is willing to fight tooth and nail for him, for his medical, and his future. Rose (who use to be an advocate for kids with disablity) just made me go find a hand book about his rights (I promise I will read it.)
Kind of off but on topic. A week ago I printed up an email from you about Burps swimming for him to read. I'd forgotten about what else was in the email. But I've noted for the last month or two a bit of an change in Ducky's view point and acceptance. Yesterday morning Ducky and I watched a movie - Temple Granlin. Fabulous movie, and at the end of it, he asked me, "This is the same thing Burp has?" He may drag is feet at accepting, but he's getting it and I know how much he loves his little Burp. One step at a time.
I need a copy of Burps swim schedule so at some point I could come watch him.
Oh btw here is Temple Grandin's website
http://www.templegrandin.com/
Post a Comment