So it's been a while since we wrote. After looking at around 5 different pharmacies to find the liquid magic, we found out it will be impossible. So we thankfully found that the hospital pharmacy had 12 pills left on their shelves. That will last us until tomorrow, (we picked it up 2 weeks ago) when we see J's regular physician. I also asked on a FB site with other parents who have similar sleep issues what they use. It's to bad that none of them seem to have children over the age of 4 and are just starting with different medicated issues. No help there.
I did read about the lavender oil. There is a lady in our church ward that sells this stuff. So I asked her about it and purchased some. (ouch!). Does it work? It doesn't put J to sleep, but it does calm him down. The first night, he wasn't to happy about getting crap rubbed on his feet, so the 2nd night we tried the back and the base of the neck...yah, that didn't go over well either. So the 3rd night we went back to the feet and he actually let me rub it this time. I did mist some on his pillow. Again, it DIDN'T put him to sleep like everyone said it would, but it did calm him down.
With taking him off his main nighttime magic pill, (he is getting 2 instead of 4 to help it last until we see the doctor tomorrow) we have seen some similar signs like we did back in 2008 when he contracted NMS or dystonia. This was when he went off of one drug and onto another. Not good. It's just a good thing we see a doctor tomorrow.
As for the stoma, we have had to use the red rubber now 2x and it's getting smaller. What's new though, right?! UGH!
No comments:
Post a Comment