Tuesday, September 10, 2013

CAN'T ANYBODY IN MY FAMILY JUST GET FUCKING MANFLU?

First my wife dies of an infection that was, quite literally, a one-in-a-million occurrence.

Then my mother, after a ten year battle with three different types of cancer, finally falls victim to GANT, a type of cancerous tumour so rare there had been less than 50 recorded cases in the US when she was diagnosed, and that delay in diagnosis was a significant factor in her inability to combat it. (Yesterday would have been her 72nd birthday. So it goes.)

More recently, my father is diagnosed with Primary Progressive Aphasia, a somewhat obscure form of lobar degeneration resulting in a loss of linguistic ability and semantic dementia.

About four months ago, our youngest son started throwing up. Twenty, thirty, sometimes more than forty times a day. Every day. From the moment he woke up to the moment he fell asleep. He hasn't been able to go to school. He can't swim at the beach or the pool the way he loves to. We can't plan a trip of more than half an hour's duration without making sure we have a supply of sick bags handy. For four months we battered our heads against doctors, specialists, emergency rooms, constant referrals to hospitals that took one look at him and sent him home with a shrug and a command to keep him hydrated until a specialist could look at him....

Last Wednesday night, Luscious and I snapped. We packed two overnight bags and, as soon as he woke on Thursday morning, Luscious drove him to Princess Margaret Hospital, the children's hospital in Perth, where she plonked herself down in the waiting room and refused to move while the staff watched his sick bag fill up. When it was so full it burst, what do you know? They admitted him.

This is what it takes to get action from the health system in my State. The butt-covering only stops when they can't ignore the vomit dripping onto their carpet.

24 hours later, we had a diagnosis.

He's suffering from Rumination Syndrome, a condition with no known cure but an 85% of positive response to treatment. In short, his body has tricked itself into regurgitating food for further digestion, and all we can do is attempt to train the associated swallowing and breathing muscles back to 'normal' behaviours in the hope that muscular reflex will limit the occurrence of the regurgitation. It could take months, possibly years, and there's a good chance he'll never be free of it completely. We've an idea about some of the potential triggers, and we're combating them as much as we can, but that's little consolation when we have to change his sheets twice a night because he's thrown up on them, and his home-schooling takes place between vomiting attacks and medication for the constant burning in his throat and gut.

This is a kid who was almost not born at all-- he almost miscarried on several occasions-- and then was born so cross-eyed he needed corrective surgery to stop him going blind before he was five. He's had more surgery at eight than I have at almost 43, spent more time in hospital than I ever have, whose calmness in the face of needles, MRIs, and invasive procedures is so pronounced that nurses comment on in it in genuine wonder, and the reason is simply that he's so damn used to it that it's as normal to him as picking up a book.

Just for once, couldn't he get a good old-fashioned manflu?




6 comments:

Stephen Ormsby said...

He's an incredible young man, with equally incredible parents. I'm proud to knwo you.

Monique from Write Note Reviews said...

Such a powerful blog post, Lee. I'm sorry to hear it's been such a hard slog for all of you to get help. Your little man is a fighter and that comes from having two strong and committed parents. So glad you at least have a starting point now.

Greg Chapman said...

Such tragedy in your life Lee, but there's plenty of hope too now that your boy has a diagnosis. I wish you all the best.

Brian M said...

Such a sad post, Lee. The little fella's in my prayers.

Tim Marsh said...

I wonder if an adult were to give a blood sample while feeling fine, then after exposure to an emotional stimuli strong enough to illicit a regurgitation response, gave a second sample; that maybe a change in blood chemistry might reveal a protein or other physiological instruction.

If so, I wonder if this instruction maybe present for those with Rumination Syndrome?

Lee Battersby said...

Tim, it's an interesting concept. I know little about the medical science involved, but it would be fascinating to see what results, if any, came about.