Impulse control - safety and sanity

[BeeMom]

If anyone has some impulse control you can spare, may I please have it?

I cannot supervise Bee 24 hours a day, and I cannot leave her g-tube without a dressing, but she is tearing it into pieces and in the last 24 hours, has clogged her g-tube by stuffing it full and shoved pieces of foam up her nose (and God knows where else).

She has been escaping from the house and wandering, and her obsession with water is becoming all consuming. 3 hours of sleep a night is wearing on me a little, too - and this is despite high melatonin doses and 3 sedating medications. It is supposed to be getting better as she gets older, but it is most definitely getting worse.

Frontal lobe damage SUCKS!

[whenwilligetsomesleep]

How old is she Beemom? Could she use a bed tent or 'safe space' to sleep in so you don't need to worry about night wondering?

[ouryve]

How is she getting out of the house? Any chance of changing your external door locks to mortice locks and making sure that all of your windows are lockable? Also, it might be worth investigating alarms for escape routes - you can get simple ones that go off like the ones on shop entrances if a door is opened.

[BeeMom]

whenwill she is in a safety bed - she can't escape at night, but that is the time she rips up her gastrostomy tube pad and either jams it into the tube or into her nose (or just shreds it).

ouryve She gets out through the doors - my dear husband thought it was cute to teach her how to open a deadbolt a couple of years ago. I was less than happy, and of course, that was something she picked up easily and unteaching something is impossible... I think we need to definitely alarm the doors.

I wish we could afford to fence the garden, as one of her favourite things to do is swing. I installed a swing in my workshop so that she could swing inside, but she still feels compelled to wander. She was outside yesterday WITH A FRIEND and suddenly got up and walked away - we found her 4 houses over sitting in the middle of the driveway inspecting a rock. Foolish me, I had just nipped inside to hit the loo.

She used to be on a sizeable dose of risperidone, but it did nothing (we knew for sure when it was d/ced and there was no change) and then her doc in London tried her on ritalin (which another doc immediately vetoed because she has mastocytosis). The ritalin helped when the dose was active, but when it wore off, it seemed like she had to cram a whole day's worth of impulse into the time between meds and bed (this was when she still slept) and she was a SERIOUS risk to herself. I don't know what to do, but when other parents of kids with special needs comment on how she keeps me on my toes, I know she is really over the top, and we need to do something. I will try the behaviour specialist again (although they haven't been able to help yet, it seems defiance and aggression are their baileywick - and while she is over the top impulsive, she is cute and engaging) and talk to the Paed, but I am barely coping right now.

I have to work - and I work from home. With her not sleeping, I can't get any work done - I can't be in the shop and DEFINITELY can't fire up my torch with her behaving as she is right now - and no work = no income.

I know... clone myself!!!

[whenwilligetsomesleep]

Hope someone else has some ideas to help. It's not much fun having to turn your home into Fort Knox. Xx

[ouryve]

If you're willing to continue with using medication to help control her impulsiveness, there are non-stimulant meds which might help, so long as they aren't contra-indicated for her. DS1 does well on atomoxetine (and we know it works because he's had a massive growth spurt and we were tearing our hair out with him before his dose was increased to match!) I don't know if guanfacine is licensed where you are, but that's another which has a lot less bounceback.

We have to keep our external doors locked, without the keys in, or else DS2 just takes himself out, given half a chance. We also have to gate him in the living room, or else every bottle in the kitchen and bathroom would be on the floor, minus its contents. I don't get a lot done with the boys around, so no suggestions there, I'm afraid :(

[MumuDeLulu]

Smith and nephew have a dressings product advice service staffed by the loveliest people imaginable.

Am guessing that some of the products may be less tube-clogging than others. They may even be able to think of a more-difficult-to-shred option.

[JsOtherHalf]

Would some all in one pjs help limit the risk of getting to the tube? Something like these? www.disabled-clothing.co.uk/racketys-zippetys-pyjamas-r152-p-418.html

[JsOtherHalf]

Or this seems better: www.disabled-clothing.co.uk/racketys-harrys-r151-p-419.html