- Joined
- Apr 26, 2012
- Messages
- 6,338
So, C has been doing really great.
We had the normal FC(48) back last month
No symptoms what so ever
He has been on the go all summer
From camping to beach blah blah blah
He also worked the first part of the summer
Earlier this week he asked to spend the night off
It was the night before his MTX dose so I told him he had to be home
by 6pm the next day to take his dose.
He proceeds to tell me that he has a bottle of MTX in the car
(just in case)
Bells go off, there are only two bottles the home one and one he travels with(he's lost his 2nd pill box in a year) the one he traveled to the beach with should be empty since he should've taken it the previous week at the beach.
So I call him on it and he sheepishly admits that he hasn't taken his MTX for two weeks, three now. The day of and sometimes the day after it gives him D, or that is the connection he has made. It doesn't happen every time but not a one off apparently either. So he decided to stop it and now no more D, he says.
We had a long talk about compliancy and that he couldn't stop any med without first coming and talking with me and then the GI and that even in doing that it may not result in a med being stopped. He agreed to start back taking the MTX in front of me.
I put a call in to the GI nurse and explained the situation and asked if there was a protocol for starting back after missing these doses. She asked had he had any CD symptoms since coming off the MTX, I said no. She said the Dr's notes indicated after the last visit that the GI wanted to soon start to wean off the MTX(not sure that he meant all the way off) so she was going to discuss it with him and get back to me.
Ughh...C is such a "if I take this then this should happen" kind of kid which has made the folic acid and vitamin D a constant battle of "let me watch you take them", since he doesn't "see" a result(like I have a headache so I take Tylenol then no headache) but he has been so compliant with the MTX.
I want my bubble back and a bottle of wine/whine please:tinfoil:
We had the normal FC(48) back last month
No symptoms what so ever
He has been on the go all summer
From camping to beach blah blah blah
He also worked the first part of the summer
Earlier this week he asked to spend the night off
It was the night before his MTX dose so I told him he had to be home
by 6pm the next day to take his dose.
He proceeds to tell me that he has a bottle of MTX in the car
(just in case)
Bells go off, there are only two bottles the home one and one he travels with(he's lost his 2nd pill box in a year) the one he traveled to the beach with should be empty since he should've taken it the previous week at the beach.
So I call him on it and he sheepishly admits that he hasn't taken his MTX for two weeks, three now. The day of and sometimes the day after it gives him D, or that is the connection he has made. It doesn't happen every time but not a one off apparently either. So he decided to stop it and now no more D, he says.
We had a long talk about compliancy and that he couldn't stop any med without first coming and talking with me and then the GI and that even in doing that it may not result in a med being stopped. He agreed to start back taking the MTX in front of me.
I put a call in to the GI nurse and explained the situation and asked if there was a protocol for starting back after missing these doses. She asked had he had any CD symptoms since coming off the MTX, I said no. She said the Dr's notes indicated after the last visit that the GI wanted to soon start to wean off the MTX(not sure that he meant all the way off) so she was going to discuss it with him and get back to me.
Ughh...C is such a "if I take this then this should happen" kind of kid which has made the folic acid and vitamin D a constant battle of "let me watch you take them", since he doesn't "see" a result(like I have a headache so I take Tylenol then no headache) but he has been so compliant with the MTX.
I want my bubble back and a bottle of wine/whine please:tinfoil: