SpinachHands
Senior Member
- Messages
- 101
- Location
- United Kingdom
They are 100% bedbound, and have done no activity in two months now. It's been a month since I was able to brush their teeth, and I was last able to change their pyjamas over a month ago. Apart from that they do absolutely nothing- I feed them liquid food through a straw, they use a bedpan and bed urinal with my assistance. They can just about roll over unassisted. They barely say more than a handful of words a day, and only open their eyes or take their sleep mask off if they need to press a call button for me.
But still, every single day they are wiped out by PEM. Usually it starts about 6-8 hours after waking up, but sometimes it's from the moment they wake up, and never goes away until they sleep.
They're getting consistent calories through the day, and usually sleep 6-8 hours. They're currently taking vitamin D twice a day, CoQ10 (100mg), B12, Omega 3, Magnesium and LDN (now up to 0.5mg). I've got NADH, D-Ribose, and L Carnitin being delivered soon to start taking too. I have a thyroid and antibody blood finger prick test that they can do as soon as they have a good morning, as well as a rapid iron test and a rapid vitamin D test that we'll also try.
I just can't figure out what it is that's causing the PEM, they could do this if it wasn't for that, but as it is they are really really struggling. I will take any and all suggestions or theories.
(Also I know I've posted a lot recently, I'm just really at the end of my rope and desperate for help, I appreciate each and every one of you that has helped so far. Even if I don't have the energy to reply I still read and take on board every comment)
But still, every single day they are wiped out by PEM. Usually it starts about 6-8 hours after waking up, but sometimes it's from the moment they wake up, and never goes away until they sleep.
They're getting consistent calories through the day, and usually sleep 6-8 hours. They're currently taking vitamin D twice a day, CoQ10 (100mg), B12, Omega 3, Magnesium and LDN (now up to 0.5mg). I've got NADH, D-Ribose, and L Carnitin being delivered soon to start taking too. I have a thyroid and antibody blood finger prick test that they can do as soon as they have a good morning, as well as a rapid iron test and a rapid vitamin D test that we'll also try.
I just can't figure out what it is that's causing the PEM, they could do this if it wasn't for that, but as it is they are really really struggling. I will take any and all suggestions or theories.
(Also I know I've posted a lot recently, I'm just really at the end of my rope and desperate for help, I appreciate each and every one of you that has helped so far. Even if I don't have the energy to reply I still read and take on board every comment)