Friday, October 28, 2011

Every Autism Parent's Nemesis... "Oh no! Not the mother f---ing patient history form!!"









(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 Kyle 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, Kyle's 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, Kyles dr referred us to a neurologist who specializes in Retts Syndrome. No, no one thinks that Kyle has Retts, but kids with Retts are known to hold their breath alot, to the point of passing out. (Kyle 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 Kyle (like having to knock him out for some test).

So my wife calls to make the appointment and to stress how severe Kyle 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 Kyle 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 Kyle 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 amoxycillin 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...

:-)

THE END




-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!





18 comments:

  1. I hate those forms too! What bugs me even more is that I have 4 kids, ages 8-16, and with all the crazy they do now how on earth can I remember the exact month this one talked or that one's tics started? We are usually referred from one doctor to the next (or move and have copies of records transfered) so why is it that they don't have everything we filled out before.

    I also start panicking reading some questions when I realize I was so distracted by child #1's Tourettes & Asperger's that I didn't even realize #3 didn't really talk until he was 3. Was the fact that I was horrible sick during my second pregnancy a warning sign of child #2's Craniosynostosis?? Is child #4's over chattiness really just a girl thing or is it another symptom of the OCD she shares with brother #2??

    I jumped through 6 months of hopes a year ago to have my oldest son tested for Marfans only to have the doctor say he's probably just a gangly teen and to come back in a year if I'm still worried. Really?? A simple blood test was all I'm asking to be sure its safe for him to participate in sports or that he isn't at risk for a heart defect that could cause death in his 20's if meds aren't started soon. Sorry to have bothered you doc.

    Frustrating that they think we are disrupting their schedule with unimportant issues when its really us being inconvenienced. But, since I have yet to be wrong on my pre-diagnosis assumptions, I'm going to keep annoying them and bring my children in when I believe something isn't right.
    -Crazy Chel

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  2. Most of the Questions that are asked, are the Answers that aren't even used in the Final Analysis. So why are they asked in the First Place?

    The Answers that get evaluated are ofen the Questions that SHOULD have Been Asked in the First Place!

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  3. No mother f---ing way. Yes, to EVERY SINGLE THING you said here.

    -from an anonymous mom of toddler twin boys on the spectrum

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  4. I am right there with you on these effin forms!!!! Lol

    Kate wells

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  5. I agree those f-cking forms drive me insane....i dont even get mine emailed to me i have to fill it out in the office...I guess thats wichita ks for you.

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  6. Those forms anger me. I've filled them out for two ASD girls for so many years (one is 18 and one is 14) and I'm still filling out forms. I just mailed in a packet that would rival the paperwork of mortgaging a home. What really angers me is the fact that after all these years, I'm pretty sure the docs don't even read them. I've even mailed them out 6 months in advance, plenty of time for a doctor to read up on them, one would believe. But no, it becomes quickly obvious the doctor has read almost nothing as they sit and ask me questions. I know other parents who reveal the same agonizing process happen to them as well. So WHY put us throught this combative paper trail hell? It just never ends. Like I said, 18 and I'm still filling this stuff out.

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  7. Unfortunately, it is the same for everyone who requires medical attention. My "doctor" yells at me saying I did not fill prescriptions ( hello? If you prescribed it..... I filled it!). They need to get their heads out of their asses and breathe the same air we do.

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  8. I just got the admission forms for my son's school. Same forms every year, same questions. He's in summer school there right now - surely they can see what's changed since I filled out the ream of paper for the past two years.

    My son is almost 17 - I've been doing this crap since he was six. God forbid who's gonna fill in the gaps when he goes to a doctor as an adult.

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  9. I so hate the intake forms one trick we have learned is to get them mailed to us ahead of time. Maybe this is the case with you, not sure. Our daughter was tested for all kinds of things that can look like autism but we are dealing with autism. Retts was one thing tested. Anyway noticed the other day she is starting to hold her breath....I know with her it is behavior. She often has strange phases I'm hoping just a phase. She has not done it to the point of passing out. I think she is just exploring this new thing she can do. I will let you know if she keeps doing it then my guess if she is this may be a sensory feeling they like. SCARY!

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  10. Our dentist was updating their files one year and the hygenist handed me a packet to fill out. I told them everything was the same, nothing changed and the girl just smiled and pushed the forms at me. I dug my heels in like a stubborn mule and told her to dig up my son's file and go from there. Absolutely no need to make parents go through that mess more than once. It's just laziness on their part. Gawd!

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  11. Autism Daddy - You are SO right on on every topic, including this one! I have two sons with ASD -26 years old and 13 years old. I know I should have all of this on an organized spreadsheet, but do I? Yeah, right. I take my best guess, knowing they were both WAY behind the norm, which is what I think they are looking for anyway. It is so interesting that with almost every parent I talk to in the autism world - their ASD kids had many many ear infections...

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  12. You are so very right!! At least they email them to you when most of us have to fill them out while at the doctors office. Mind you being there with your ASD child and filling out the forms is a recipe for disaster. In my experience we have damn near been kicked out of the place as people are looking at us funny or saying smart a** comments.

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  13. So true! I go into a funk after every one of these forms. People tell me I should apply for this or that funding etc but sometimes I have to weigh up the possible amount of money against the pain of filling in those forms.

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  14. I have a son 12yrs old with severe to moderate Autisum and he did this for a while and i can remember when i was a child not autistic just a brat i guess but i would sometimes hold my breath and she would push on my nose it worked, not sayoing it will but it's an easy thing to try. oh we also did this with my son it worked to but we had to do it everytime we seen him hold his breath he eventualy quit i sencerly hopes this helps.

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    Replies
    1. My cousin used to hold his breath until he passed out all the time, and the docs said not to worry about it because he'd start breathing again as soon as he passed out. That doc said it was an attention getting thing, but I'm not sure about that. My cousin has his share of issues.

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  15. I scan in the form they mail me, and save a blank copy and a filled out copy on my computer. Every time I get a form with different questions, I make a new form. I turn that in instead of the ones they give me, the same for my pain questionnaires with the body image where you have to mark what hurts. So far, the offices have liked my versions better than theirs.

    I've also found that, for yourself or any child that takes medication....make a wallet card. Name, birthdate, emergency contacts, drugs taking daily, drugs taken occasionally, supplements taking, medicine allergies and sensitivities, blood type (if you know it), conditions the person is currently being treated for. I've found that if I say I can't take a medication, they want to know what my exact reaction was, even if I emailed the doctor while I was breaking out in hives. So with drug allergies and sensitivities, I list the reaction to them. At the bottom of the paper, put "last updated October 17, 2014" and keep it updated monthly. If nothing has changed, great, all you need to do is change the date. It's great when you have an unexpected appointment and can't remember if this child is taking 72mg or was the the other one? Or did we switch off that med? Cause you can never remember the details when you are put on the spot and under stress. Of course, mine is more like a full sheet of paper than a card, but you can fold it pretty small and it's really valuable to have on hand.

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  16. I agree those"specialists" make my blood boil too. No time for mere mortals geeesh!

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