We’ve re-upped. I’ve made contact with our new supplier*, given him the readies**, and my daughter is shooting-up*** again.
*been to the chemists
**handed over a GP’s prescription
***having a daily injection of growth hormone
(Do you ever think you might have watched Breaking Bad and The Wire a little too fervently? No? Just me, then).
(Do you ever think you might have watched Breaking Bad and The Wire a little too fervently? No? Just me, then).
She was on growth hormone for just over a decade from around the age of around five. Although it was slightly more uncharted territory when she was little, it’s since become widely accepted to be beneficial for people with Prader-Willi Syndrome, and there’s some solid research to back this up. It helped my girl's body composition, strengthened her muscles, improved her motor function, gained her some height (before her spinal fusion put the brakes on this) and increased her energy levels and alertness.
But, a couple of years ago, my daughter's endochrinologist took a decision to stop the drug. I have no idea how I sleepwalked through that. I took my eye off the ball. Hell, I took my eye off the ball, left the field of play, showered and went home to Netflix and chill. My usual squeaky-wheel stubbornness was inexplicably oiled over. Enough of the euphemisms: I allowed a poor decision to be made and didn’t challenge it as I should have.
However, my niggling doubts about the course of action - or rather course of inaction - got nigglier, and my wheel started squeaking again. After a series of discussions* with her endochrinologist (*‘discussions’, ‘pleadings’ pick a word), and after a test which proved that she did have growth hormone deficiency, my girl is back on Genotropin.
My daughter has absolutely no anxiety about being jabbed in the thigh with a needle every night. She did have a slight wobbly ‘6 on the Panic Richter Scale’ episode in the GP’s surgery when she found out that we no longer need a big dial-up plastic pen thingie to load a cartridge with her entire week’s dose into and that each of her doses now comes in its own throwaway syringe. (No, I don’t know why this was so important to her, but it was finally solved by referring to the syringes as ‘cool little mini pen thingies’).
So under supervision, before bed tonight, she pushed the plunger on her cool little mini pen thingie. And as the liquid flowed into her, the relief flooded into me.
Talking Heads - Drugs
Mom told me that (insulin) syringes hurt more than pens. The syringes needles are also bigger and much more visible than pen's. For me, it's the likeliest explanation for her panic attack and her anxiety, combined with the change she dislikes so much.
ReplyDeleteEven without PWS, I'd had been very anxious about such a change. Learning a new process of injecting with a new device.
The explanation for her anxiety is actually much simpler than expected.
How d you feel about this explanation ?
It makes sense, Giulia. It definitely isn't anything to do with the needles, or any issue with pain - she has absolutely no fear of injections, and her high pain threshhold means she doesn't seem to feel a thing! I think it was just the usual anxiety about change. She had in her head what it would look like, and she couldn't picture or adjust to the new version easily. Now she's seen the syringes - sorry 'mini-pens'! - and used them, she's fine and dandy. The disposable syringes are much simpler and easier to use than the old pen, where you had to 'dial up' each daily dose, so they're actually a great improvement. She's happy, so I'm happy.
DeleteI had growth hormone injections as a child and would give my parents the runaround every night and create blue murder. I'm glad that after the initial wobble she's confident to inject herself, something I only managed to do once! But I suppose that's where a high pain threshold can be beneficial!
ReplyDeleteAch,don't beat yourself up about "taking your eye off the ball",or whatever you want to call it.It's a matter of trusting docs in their specialised field to know more than you do.Not always a foregone conclusion.One doesn't really like to suggest to them that maybe you have read up on this and followed research more thoroughly than they have.But they're busy people and they also have their "pet" fields,so can be woefully lacking.Glad your niggling brain got the matter resolved.My girl has stayed on the GH,but came to it late.We had a problem during transition of health services ,from child to adult.WE were expected to access all the departments via our GP then.But nobody said so.And things got dropped that physio were keeping an eye on-like her piedro boots.Now ,my girl has got an ankle that turns under again and seems to be walking on the side of her foot.And it's painful.Grrrrr.There is so much that you ,as parents,have to be aware of,and following up-my diary has always been full of appointments and dosages and "pick up prescriptions" notes.What I find frustrating is when my girl goes to respite and every time the district nurses waste some GH cartridges ,learning to use it.I did try to get together to run through it,but was told they were too busy to meet-and how hard can it be? Obviously that last question was answered when they phoned me up in my hospital bed to ask me to run through the changing of cartridges.At £46 a throw,the NHS cannot afford these ladies. lol X
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