Every Autism Parent’s Nemesis: The Patient History Form
October 28, 2011
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Now Reading: Every Autism Parent’s Nemesis: The Patient History Form
October 28, 2011
(originally written & published on October 28, 2011)
The doctor visit intake form. How many doctor visits have we put off because we didn’t want to fill out the intake form?
You know the form that most doctors associated with ASD in any way want you to fill out explaining your child’s ENTIRE history.
And not the good history, no the history of all the painful medical moments in your child’s life or the milestones they didn’t hit.
You all probably know that my son holds his breath CONSTANTLY. I mean like all day long. He takes a deep breath, protrudes out his belly and holds it for as long as he can. Then exhales and does it again. All day long. You can read more about this here.
Anyway, his pediatrician is at a loss as to what to do about this. We’ve ruled out most things medical and we all feel that it’s most likely behavioral.
But just for the hell of it, the pediatrician referred us to a neurologist who specializes in Retts Syndrome. No, no one thinks that the king has Retts, but kids with Retts are known to hold their breath alot, to the point of passing out. (My son has passed out for a few seconds a few times)
Anyway, we live in the NYC Metro area so many of the doctors that we are referred to are some of the best doctors in their field and we should be honored to have an appointment with them and be in their presence. (can you note my sarcasm)
And we’ve some of these high profile docs before, many have awful bedside manner and usually send us on a wild goose chase of MRIs or something.
But we’d figured we’d go see this doc, see what she had to say, and if she recommended anything we’d hesitate before doing something that involved really bothering the king (like having to knock him out for some test).
So my wife calls to make the appointment and to stress how severe our kiddo is and how we can’t wait in the waiting room for more than 15 minutes (like she does with all docs). The woman on the phone says fine but I’m gonna email you 3 forms you need to fill out before I can even schedule your appointment. One is for all our info: names, address, phone, insurance info and the other is a patient history form.
Oh no the mother f–king patient history form!! Another patient history form.
I print out the 14(!) page form and look at all the usual normal questions. When did he crawl, when did he walk, etc, etc, and then come all the painful questions. What was the pregnancy like, did you get a epidural at birth (yes), did he have any antibiotics right after birth (yes cuz they thought he had an infection), did he have alot of ear infections as a kid (yes), was he on antibiotics for the ear infections (yes, amoxicillin). Meanwhile no one has ever said that any of this has anything to do with autism, but you start freaking out, why are they not asking, what are they not telling me. Was I supposed to refuse antibiotics at the hospital after birth? How was I supposed to know that?
And then the form goes on to ask more about your ask child. When did he start talking & when did he regress? Does he do this? Does he do that? And this part makes me realize how far behind even in the ASD world my kid is.
Then they usually ask for a complete food diary for a week and buried in there are always some new red flags. In this form lots of questions about dairy intake and how much calcium you think your child gets on a daily basis. Why are they asking this? Should he be getting more calcium or less?
And then they always want to know what kind of services your child gets. Give us a weekly breakdown of services & therapies in school & out of school. Why does a medical dr need to know this? How is this gonna help her help him with his holding breath issues.
So we must’ve filled out forms like this over a dozen times over the past 6+ years and it’s always painful for the wife and me and we put it off until the 11th hour. I’ve said I should just write up my own history form and just send that, but there’s always new questions and they always want it in their format for their records.
So at the 11th hour, 3-4 days before the appointment we will stay up til 1am and complete the form and email it to the doctor. And then we get to the appointment and get in to the doctors office and the doctor, the expert in his field, is obviously too busy to read that document that we spent hours working on… so he proceeds to start asking us the same f–king questions! in the office! with my guy bouncing off the walls! “What was your delivery like?” It’s all in your f–king notes! And what does that have to do with today. Maybe that info, keeping the data of all the kids who had amoxicillin after birth will help some future generation, but while my kid is here in this room, evaluate him, check him out and tell us if you can help us.
“Well I don’t think it’s _____ but let’s do a ______ just to make sure…” is almost always what comes out of it.
That’s all I’ve got. I’m gonna end it here… just know that the wife and I will be slowly making our way through another one of these history forms this weekend so I can email it to the doctor’s office on Monday so they can NEVER read it…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).