Mog's muscle spasms cause her pain and discomfort and mean she can't sit in a chair but has to lie down as her middle won't bend. Lying down causes increased risk of aspirating secretions and then increased risk of chest infections. Spasms are treated with diazepam. Diazepam relaxes the muscles, meaning fewer spasms, more floppiness, and more sleep. More sleep with more floppiness means less coughing and more secretions building up in the lungs. More secretions mean more chance of infection. They also mean more sleepiness. Solution? Remove the diazepam. But withdrawing the diazepam causes increased muscle tone, which causes further muscle spasms...
Having too many secretions and being doped to the eyeballs results in being sent home from school. Being sent home from school means having to walk with me to pick up Little Fish. It is sleeting. Being overly floppy means needing to be slightly reclined in order to not flop one's head down and obstruct. Which means inhaling sleet. Which means increased risk of chest infections. Etcetera.
So, in an attempt to control the totally uncontrollable, a friend and I have come up with a new concept. We'd like to suggest all ceilings should be coated in velcro. My choice would then be to throw all soft toys, odd socks, spare blankets,
cats and other fluffy things up there thus giving me beautifully clear and shiny floors and the brief illusion of a clean house. She'd prefer to stick her children up there - which would also have the clean house effect going nicely.
I think it's a winner, how about you?
Tia
7 comments:
Apologies if this is a daft question, but why doesn't Mog's middle bend?
Alicia was very tight and had spasms so bad she could not move her legs and her arms were like chicken wings and difficult to get away from her body. Plus her shoulders were almost up by her ears. Her muscles were so tight her arms are shorter than normal. We were giving her baclophen which did nothing as we couldn't get to a therapeutic dose without increasing seizures and then diazepam which helped some but had the effect syou mentioned. She is now on dantrolene sodium and it has been wonderful for relaxing those arms and legs and she has enjoyed showing us how she can even wiggle a bit. It does not cause sleepliness. It is an older drug and not used as much because there are so many newer ones and you do have to test liver functions on occassion. It has worked so well I almost contemplated shaving under her arms Sunday! I had to suggest this med to the doctor!
When Mog is in spasm, her middle doesn't bend because the muscles in her back are stronger than the muscles in her front (same as most of us), so they pull tighter. This has the effect of causing her to arch backwards; her arms fold up tight, her back arches and twists slightly, and her legs lock out straight. It's just not possible to bend her once she's in that position without causing her a lot of pain; you have to try to break the spasm somehow first. Sometimes it eases itself, sometimes a hand massage and a bit of Norah Jones will do it, and sometimes she needs medication in order to override whatever's sending the "pull, Pull, PULL!" message to the muscles.
Dantrolene - we had a paediatrician appointment today and that actually came up as an alternative. He's reluctant to try it due to the liver problems it can cause; his reasoning was that she's on a number of drugs which are metabolised through the liver, and if anything did interfere with that she'd really be in trouble.
The plan is not to stop the diazepam altogether, but to let it get out of her system and then try a lower dose, gradually withdrawing the baclofen at the same time.
Good luck with the drug holiday approach, Tia and Mog - I really hope it works for Mog (I got onto a combination of diazepam and dodgy for the liver anti-spasmodics before I was 20 - not good as it leaves you with nowhere much to go except various operations/ITB).
What a novel idea! I would love to have velcro ceilings!! Yippee. I think I'll order one tonight.
Michelle & girls
What "fun" working on the drug coctail. Praying you will find a solution.
Velcro ceilings - wonderful idea. Personally, in your case, I think I'd invite the last doctor who was such a pain home and stick HIM on the ceiling - make him watch what is going on and then maybe he'd be a bit more helpful ;o)
Hugs & Prayers!!
hope you are finding a solution with her meds even as i type this. it's a lot of work finding the balance, isn't it?
as for those ceilings, my sister will be first in line to purchase- and i'm certain she'd often want to throw her kids up there too :O)
Post a Comment