Sunday, September 14, 2014

We're off to see the Wiz(nitzer)


As of this writing we have an appointment to see you tomorrow at 3:20PM. I am only writing this now because sometimes it helps me to write my thoughts out first instead of going on the fly. I just wanted you, and by extension Dr. Wiznitzer, to know where I am coming from headed into this appointment.

The meds are not working. You already know that Matt was admitted to Rainbow twice in the past month. Last night we went to the ER again here in Elyria because of Matt's constant violence and aggression. And by constant I mean all day, every day. I'll show you a video. I'll show you some pictures of damage he has done with his head. And the few pictures I took only show the tip of the iceberg. He attacks my wife. He attacks my daughter. He attacks me most of all because I intervene with the other two. He will kick his bedroom door and headbang until 1AM and wake up at 5AM and keep doing it.

And the response from the two admissions to the hospital have both been the same. Increase one of his meds by some small increment, and send him home. The process begins again, and when the constant damage and noise bores a hole into our psyches we take him back to the ER, where they see that he is a danger to himself and others, they have to restrain him in order to give him a sedative, but after 12 hours (yesterday it was 17) they send him home because no one will take him. Because Dr. Wiznitzer isn't a psychiatrist, they won't admit him to psych, they say "this is just part of his autism" and send us on our way. And because Matt is on antidepressants instead of some "regular" med, the medical floors say "this is a psych issue" and send us on our way. And the wheels go round and round again.

The current behaviors have been going on since last year. I know that Dr. Wiznitzer believes that Matthew is bipolar. I also understand that psych meds don't work right away. I take three myself, I get it. But we should be able to see some small improvement at this point, some tiny ray of light through the pinhole that says to us "yeah, you are on the right track"? Instead, the aggression is worse. And I don't mean steadily worse over the past year, I mean exponentially worse over the past two months. It's as if the bike trail we've been on has risen higher and higher and then BOOM! Mt. Everest is in the way. The behaviors have gone from two or three times a day to all day for hours.

I believe Matt is in pain somehow. Carmen Hansford, Matthew's pediatrician, believes the same. This is why I pressed hard for an MRI to be done. This is why, when a condescending ER doctor says "oh, your pediatrician must not REALLY think he's in pain, otherwise she would have prescribed something", I get indignant. This is why, when an ER doctor at Rainbow says "we are going to have to send him home", even after they have seen the behaviors he is capable of, I say, "umm, yeah, maybe we should revisit this decision". Do they want me to wait until he puts his hand through a window for us to come back? Because he's giving it the old college try.

I do not believe that we have done all we can do in this area, to definitively rule out the possibility of pain. Yes, CT-scans and the MRI do not show any brain damage. An ultrasound of his kidneys show no kidney stones. He had a chest X-ray a couple of months ago, that showed nothing. And the constant lab work has shown nothing abnormal. But what I don't know is whether a CT-scan can tell us if he is having seizures. Can it show whether someone suffers migraines (my theory and that of Dr. Hansford as well)? Could he have some sort of inner ear problem? Could he be having stomach aches? Intestinal issues? Heart problems? None of these issues have really been addressed, the train of thought has been stuck at the bipolar station.

(sorry, I was interrupted. Matthew has almost kicked a door down.)

Yes, there are social services available. Yes, there is respite out there, and tent-beds we can keep him confined in at night, and many other things; I was handed a sheaf of photocopies as we walked out the door the last time he was admitted. But these things have to run through channels. These things take time. And time is something my family doesn't have. What we do have is many thousands of dollars in house damages that we will never be able to pay, a mom who hasn't been able to hug her son in over a year, a daughter who is scared all the time, and a father who carries the weight of all these worlds upon weary shoulders that are ready to break.

OK, this letter has gotten longer than the textbooks you teach out of. The nub of the gist is that I would like to at least phase out the Lithium and the Latuda. Abilify has shown some results in the past, and Ativan has shown results in the hospital, albeit in a much larger dose at one time than we give him (2 or 3 MG vs the 0.5 MG tablets he is prescribed). I would also love to see some sort of pain relief prescribed, something stronger than over-the-counter, although I am aware that it would likely require other tests to be done in order for insurance to deem it necessary.

I appreciate your help for us so very much; you have treated Matthew well, even when he kicks you, and that's something a parent never forgets. You have gone to bat for us with the insurance companies and gotten results. But I'm at bat now, and I'm swinging for the fences, because a base on balls isn't winning this game. My family has too much at stake.

---Sean MacNair


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