sarahsunshine
Well-known member
After the past 2 frustrating (infuriating?) months of trying to get Skyler's INR stable, we finally managed to get it above 2.5 for the second time since the end of January! The thing is that his dose is extremely high, and that worries me. As a recap, Syler has 2 On-X valves and a graft of his ascending Aorta. Skyler's been on warfarin since he was 4 months old, and dad has been self-testing since taht time. We've been self regulating since 2006. Prior to surgery (Nov 2011) he was on 8/8.5 mg alternating. That kept his INR at 2.8 +/- 0.3 .
Since his surgery Skyler (12yo) is much more active and has TONS more blood flow (increase from 17mm St.Jude to 25mm On-X in Mitral location), he's gained weight (7 pounds), but he hasn't grown much in height. Also, we have had a bunch of trouble with his mother not following recommended doses that his dad tells her to, Skyler missing about 1 dose/week when under her care, and Biomom accidentally gave Skyler 4mg too little for 2 weeks (gave him 2mg instead of 4mg pills). All this has made regulation of dose very difficult over the past 2 months since Skyler is with us one week, and with his mom for 1 week. We finally asked the INR clinic to intervene and tell Biomom what dose to give in the hope that she will likely listen to them if she doesn't listen to Biodad. After forgetting a dose early last week, he was put on 9mg for the rest of the week and his INR went all the way up to 1.8 from 1.7!
Since Sunday night, however, Skyler is with us for the week, and for the past 3 days we gave Skyler 11 mg/day. After testing again last night, he was at 2.7! Although it is probably still increasing if he stays on that dose, the fact that he's finally above 2.5 (and even 2.0) is cause for celebration! We have since decided to decrease to 10mg for the rest of the week to see if 10mg will keep his INR stable, increase, or decrease by Sunday. If it decreases, we'll increase to 10.5, if it increases again, we will decrease to 9.5. I doubt it will increase, and think that 10mg is likely about the right dose.
So here is my question, how many people are on 10mg or higher? This seems like an awful lot to me (70mg/week on a less than 75lb kid) and I am concerned about affects to bone development.
Since his surgery Skyler (12yo) is much more active and has TONS more blood flow (increase from 17mm St.Jude to 25mm On-X in Mitral location), he's gained weight (7 pounds), but he hasn't grown much in height. Also, we have had a bunch of trouble with his mother not following recommended doses that his dad tells her to, Skyler missing about 1 dose/week when under her care, and Biomom accidentally gave Skyler 4mg too little for 2 weeks (gave him 2mg instead of 4mg pills). All this has made regulation of dose very difficult over the past 2 months since Skyler is with us one week, and with his mom for 1 week. We finally asked the INR clinic to intervene and tell Biomom what dose to give in the hope that she will likely listen to them if she doesn't listen to Biodad. After forgetting a dose early last week, he was put on 9mg for the rest of the week and his INR went all the way up to 1.8 from 1.7!
Since Sunday night, however, Skyler is with us for the week, and for the past 3 days we gave Skyler 11 mg/day. After testing again last night, he was at 2.7! Although it is probably still increasing if he stays on that dose, the fact that he's finally above 2.5 (and even 2.0) is cause for celebration! We have since decided to decrease to 10mg for the rest of the week to see if 10mg will keep his INR stable, increase, or decrease by Sunday. If it decreases, we'll increase to 10.5, if it increases again, we will decrease to 9.5. I doubt it will increase, and think that 10mg is likely about the right dose.
So here is my question, how many people are on 10mg or higher? This seems like an awful lot to me (70mg/week on a less than 75lb kid) and I am concerned about affects to bone development.
