My son Joe showed up to his 7yo well-checkup with a fairly advanced urinary tract infection. Good thing they check that stuff, because he hadn't complained of any problems; and as he was pretty much independent in that area, I hadn't noticed any.
Long story short: After a few rounds of antibiotics, several months, a few sonograms, many follow-up visits and a lot of palaver, there was still blood in his urine. They then decided to do this test, which involved taking an x-ray of his bladder while full, and then he had to pee while they x-rayed the process in real time -to ensure all was working OK. The techs were two gentlemen of mature years; -nice men, but given to lots of platitudes and false joviality (is that a word? it is now). "We're just going to take a picture of your bladder, Joe. This won't hurt a bit".
Here was the problem: The bladder had to be full of s special x-rayable fluid. To get it in there... well, it wasn't ingested. They used a local anesthetic, but Joe still said it hurt. His concerns (and mine) were poo-pooed by the Overly Jovial Men. This was before I knew we have Ehlers-Danlos Syndrome Type III. It is well documented that Lidocaine doesn't work too well on us. Poor Joe.
So they filled up his little bladder, took a few pictures, and then they wanted him to pee lying down. This insulted Joe's Autistic sensibilities hugely. He was a BOY! He didn't pee lying down like a baby! Thankfully the while contraption tilted, so they uprighted him while still on it, which freaked him out a bit (more). I can still see him standing on that table, naked, all 48lbs of him, shivering, goosebumply, and pale blue; trying to hold it together enough so that he could pee and get out of there. He did and I was proud of him.
The test was normal.
A few days later (I'm not kidding!), we went on vacation to the Jersey shore. On the very first night, Joe fell onto his head. I knew immediately by the scream that he was really hurt. The ER poo-pooed our concerns (they were closing!) and sent us home with he usual instructions: wake him every few hours and come back if he is unresponsive or starts vomiting -but only after they re-open at 10am (nice).
The next morning, there was obviously something quite wrong. He was completely white, refused to eat or drink and complained of a headache. On the way to the ER (10 minutes) he screamed at the slightest bump or pothole and threw up twice.
He needed a head CT. He had actually been doing really well with the whole hospital thing until an overly-cheery young female tech announced that she was "just going to "take a picture of his brain"
Shit.
I don't know quite what he thought this might entail, but this was less than a week after the bladder thing, and I can only imagine his thoughts.
Joe lost it. He completely and utterly lost it.
He went into full "fight" mode, throwing Ninja punches and kicks (aimed to miss) that he had seen on the telly in her direction. She ended up backed against a wall, helpless. She was NOT amused.
So Joe was sent to the ER proper, put in a gown and left with me to try and calm down a bit. They wanted to sedate him for the CT scan, but there was a question as to whether he would allow them to run an IV without a fight. Given his stress level, I didn't think it was likely, so I gave them permission to restrain him if needed.
Restraining USUALLY means swaddled in a blanket and sat on (not really) by several nurses. Imagine my horror when a tall and tattooed young gentleman, built like a brick outhouse, with the muscles on his muscles bulging out of his scrubs, walked down the ER and asked me, "where is the the kid who needs to be restrained?" I gulped and pointed to Joe. I mean, honest to God! Talk about overkill! I think one of this guys arms would have outweighed Joe. He could have restrained him with one thumb! I explained to Captain Meaty -as I had to all the nurses- that Joe is Autistic and to take their cues from me. Thankfully, they listened. In fact they were really, really good.
It turned out that Captain Meaty was actually a complete marshmallow. He bonded with Joe over Spiderman and Pokemon. The nurse explained to Joe -in detail- how they were going to run the IV and Joe allowed them to do it. He didn't need to be restrained.
In fact, Joe was responding so well to this guy -now renamed Mr Marshmallow, that we decided to try the CT scan without sedation. Mr Marshmallow went into the room with him, stayed with him, and talked him though the whole thing. Joe stayed still, they got the pictures first time and we were all done. The CT scan was clear, thank goodness.
So now you know why Joe doesn't like x-rays.
In contrast, Grace had her first x-ray (chest) conducted with maximum niceness and minimum drama in a private after-hours pediatrician's office, which is still called "the skeleton doctor" In Grace parlance. She is always happy to go back there.
"Which doctor are we going to see?"
"The skeleton doctor"
"Yay!"
First impressions last.
Poor Joe! I hate those tests where they make you have to have a full bladder. And then to be a small boy having his bladder filled by catheter without pain relief! No wonder he was traumatized and doesn't trust x-rays at all.
Posted by: yanub | April 01, 2009 at 02:18 AM
I'm so impressed at Joe's eventual willingness to cooperate with all those strangers and all the tests. My Ashley freaks if we just approach the hospital ER, and must definitely be sedated. Unfortnuately, even the swaddling and nurse sitting are not enough to restrain her. She's one strong kiddo :)
Posted by: Deborah | April 01, 2009 at 12:48 PM
OMG, poor Joe! How humiliating AND painful! :( Poor guy - no wonder he'd be terrified! I would be, too! In fact, I think I'm traumatised on his behalf! (Never said I wasn't tipping on the egde of some Spectrumness myself;) ).
But YAY for Mr Mea... I mean Marshmallow! How cool!
My son once hit the corner of a coffee table at a friends house. With his forehead, right between the eyes. They lived out of town, in a little 'boonie' community, where they have only a doc on call. She put a butterfly bandage over the gouge, thinking that would do the trick. I drove home and went right to the real ER at the hospital where they definitely wanted to put in stitches. Boy Child, however, was mightily freaked out by this point and very tired, not to mention having taken quite a whack to his *face*, which had to hurt. He didn't like the sound of 'stitches' sewing him together, so started to struggle. They brought in another doc, young, tall and sturdy, but not a gym-rat type. Anyway, they just pinned the poor little guy, despite my wishes to try and calm him a bit, and sewed him shut... while I uselessly tried to talk to him... and the blood ran into his eyes. EW.
Then, thankfully, it was done quite fast, and they let him go - while he still struggled and they said "Hey, bud! You're ok and done! Wanna popsicle?" He was all "Popsicle?!" That helped. Too bad doctors get-er-done didn't suggest that BEFORE the holding down part. :(
He wasn't too traumatised by that. It was a similar situation where the wanted to do a general anesthetic for dental work and he decided last minute he did NOT like the look of that gas mask... or the 'overly nice' docs and nurses who were not about to let me talk to him for a few minutes to calm him. Nooo, they said 'Mum! Help! And proceeded to hold him to they could get the IV in instead and I was trying to hold him, but soothe him and promised I'd be there when he woke...
Shit. I went outside and cried my face off. I hoped he wouldn't remember it.
When he came to later, I was there for him while he cried his way outta the anesthetic and took him home. A while later he said, tremulously, "Mommy? Why did you help them hold me down?" and I could have died in horror for him. :(
He was terrified of dentists from then on and it was only due to the ceiling TVs and headphones my dentist has (she's so great! VERY talented and skilled) that he could even get through a check-up.
Finally, he's gotten older and some years ago he was able to get a filling done after being told either the regular dentist did it or he'd get to 'go to sleep like before' to have it done. Smart boy chose to do it and he made it! Still hates it (well, who the heck likes mouth needles?!) but it's always angered me at the insesitivity shown by these professionals... and I wished I knew you then (of course, our kids are different ages, but you know); you definitely gave me some great ideas, like having a hand-out sheet explaining for medico types!
OK, sorry, done with super-comment and crying at those memories. Who was more traumatised, I sometimes wonder?!
Posted by: Lisa Moon | April 01, 2009 at 02:12 PM
Wow, that bladder test sounds really awful. And I worry that my Apple could easily have something like a UTI without telling me. The kid doesn't even know when she's hungry or thirsty. She just eats all the time and drinks when I make her.
I think I'm a little bit in love with Mr. Marshmallow. How wonderful to have found someone that worked so well with Joe! How sad that it wasn't that way for his bladder x-ray, or at least someone local to you that you could have the benefit of seeing the next time Joe needs an x-ray.
And what you mentioned about lidocaine and EDS -- I did not know that. But I know that every dentist that has ever paid attention has been shocked at how much it takes to numb me (and the ones who don't pay attention, well, I suffered through some very painful procedures).
Posted by: Quirky Mom | April 01, 2009 at 02:12 PM
Yanub,
Yes that experience was a bad one for Joe. We had the x-ray yesterday and he was amazed at how simple and uncomplicated a normal x-ray actually was! He got the all-clear BTW -no surprise there...
Deborah,
Yes, I was lucky in that Joe improved a lot with this stuff as he got older. Also we now have The Letter that we give to people beforehand, which makes a huge difference to how they perceive and treat him.
Lisa,
Yep. I think often the moms are more effected by this stuff, although yesterday Joe did demonstrate that he remembered that bladder x-ray very well.
QM,
It's kind of an occupational hazard with our kids that they can have something and not know/notice/tell. Grace once stood in a scalding bath. I grabbed her out just as she was about to sit. She didn't feel that it was too hot. With my kids, this improved vastly with time and OT.
I forgot to mention at the end, Mr Marshmallow told me that his mom works with Autistic kids. I guess that is why they sent him and not a different muscleman.
yep Lidocaine and EDS
http://www.ehlersdanlos.ca/localanaes.htm
also there is a study taking place in Holland.
http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1097
Europe -especially Northern Europe is a good place to look for EDS studies and data.
Posted by: One Sick Mother | April 02, 2009 at 08:36 PM