Narrowminded
Extremely helpful member
- Joined
- Apr 30, 2016
- Messages
- 2,830
- Reason
- Lost a loved one
- Diagnosis
- 07/2007
- Country
- US
- State
- PA
- City
- Pittsburgh
Hi all,
I am not a Dr. and I don’t play one on TV. I’m just a CALS who pays very close attention to what meds my PALS is on and how they affect him. I want to relate something I’ve learned so that you may be aware of a possible side effect of this medication.
Brian has been on Robinul for something like 5 years, with the dose increasing over that time. For the most part it has been a huge help with his mucous overflow.
Over the past 6 months or so, it hasn’t seemed to be doing much good and I hesitated to again increase the dose. According to his physician, 8mg/day is the max. Brian was on 6.
At Mother’s Day, he started having some issues. His SATS going down and being very hard to bring up, even with a lot of O2. (For those that don’t know, he’s been vented almost 8 years). His BP will go up and his HR will also increase.
This issue seemed to come and go. Sometimes he would get very dry and I would remove the Robinul as no need. I noticed after removing it, his SATS would then go back to normal very quickly and the O2 could be reduced quite quickly with out losing any situation.
Over the past 2 weeks we have again had this issue and my poor kids struggled mightily while I got a few days of respite away. When I got back I cut the Robinul, as soon as 24 hours of it being out of his system happened, the O2 shot to normal and he is now back off of the 5L they had him on just trying to get him close to normal.
We did increase meds of anxiety during that time, but nothing was changing with the oxygen saturation. This made him have feelings of air hunger and just shot the anxiety higher.
Since this was the second time removal of Robinul has affected his oxygen level I just wanted others to be aware that this is a possible side effect. For us it took years of being on it to show.
Take it for what it is worth and always consult with your physician if you have any concerns. I am just relating what happened to us.
Hugs
I am not a Dr. and I don’t play one on TV. I’m just a CALS who pays very close attention to what meds my PALS is on and how they affect him. I want to relate something I’ve learned so that you may be aware of a possible side effect of this medication.
Brian has been on Robinul for something like 5 years, with the dose increasing over that time. For the most part it has been a huge help with his mucous overflow.
Over the past 6 months or so, it hasn’t seemed to be doing much good and I hesitated to again increase the dose. According to his physician, 8mg/day is the max. Brian was on 6.
At Mother’s Day, he started having some issues. His SATS going down and being very hard to bring up, even with a lot of O2. (For those that don’t know, he’s been vented almost 8 years). His BP will go up and his HR will also increase.
This issue seemed to come and go. Sometimes he would get very dry and I would remove the Robinul as no need. I noticed after removing it, his SATS would then go back to normal very quickly and the O2 could be reduced quite quickly with out losing any situation.
Over the past 2 weeks we have again had this issue and my poor kids struggled mightily while I got a few days of respite away. When I got back I cut the Robinul, as soon as 24 hours of it being out of his system happened, the O2 shot to normal and he is now back off of the 5L they had him on just trying to get him close to normal.
We did increase meds of anxiety during that time, but nothing was changing with the oxygen saturation. This made him have feelings of air hunger and just shot the anxiety higher.
Since this was the second time removal of Robinul has affected his oxygen level I just wanted others to be aware that this is a possible side effect. For us it took years of being on it to show.
Take it for what it is worth and always consult with your physician if you have any concerns. I am just relating what happened to us.
Hugs