New Med: Arginine

[rainsplats]

Is anyone else on Arginine or R-gene 10?

They recently put Seraph on it. They told me it was a vitamin, but it is not. They didn't tell me about any of the possible complications. The test to see if she even needs it (which requires an IV and several blood draws over time) is only right 70% of the time....and it can mess w/ your potassium levels. Ugh.

I just want to know if any one else has been on it....and if they've had any good or bad experiences with it. She's been having more reflux trouble since they started it, too.

[MatthewsMom]

Matthew has been on Arginine a whole bunch in his life. After his OHS last October, he was on it until Feb for low chloride due to heavy diuretics. As long as it was an IV med, everything was fine. I mean, he did have fluctuations in his labs that required altering of Arginine as well as his diuretics, but nothing terrible happened. He was also on it in the NICU (he was there for 3.5 months as a preemie), and it has been suggested to me that Arginine could be the reason behind his excessive weight gain. (Who knew...a heart kid with EXCESSIVE weight gain!) Anyway, he did get REALLY chunky (obese in fact), but he has slimmed down. He still is chubby though and he still has problems with excessive weight gain, whether due to fluid retention, hypothyroidism (which he has), Arginine, or some other thing, we may never know.

However, when Matthew was switched to oral Arginine to come home, things were DISASTEROUS! He seemed to be such a fussy baby. We hadn't known any different, since he had been in the hospital most of his life. He didn't ever take naps, he cried and threw up ALL the time and there was NOTHING I could do to calm him, even as his stay at home mother! It was a nightmare. In February, our cardiologist had us stop the arginine and diuretics (and reglan and erythromycin for reflux) all together and our lives changed completely. All of a sudden, he was happy all day long, he took two good naps everyday, he never fussed, we have all kinds of fun together, and...he quit eating. He has not eaten since. We think he was eating only for comfort, and when the need for comfort stopped, he didn't see any reason to eat. We have been told that having arginine in your stomach is like drinking salt water and makes you feel really sick. And all that time we had been increasing his dose (per our pediatrician, who really probably should not have been involved in the whole thing - we should have only worked through cardiology on that one!) until he was getting 30mL per day! Poor baby!

As far as blood draws go, our cardiologist was never in favor of checking as often as our pediatrician wanted us to. We had a standing order for a BMP for a LONG time and we were instructed to go to PCMC to check it once a week, and many times we had to go more often than that because the sample "hemolyzed" and we had to make sure that the potassium wasn't really as bad as it appeared (which it never was). For that reason, we never let them do heel pokes because that causes the sample to hemolyze more often. So, the IV team had to come to the lab to draw his blood at least once a week. Yeah, this is no vitamin!

Anyway, I guess the point is that we never had any serious trouble with IV arginine, Matthew's potassium was always within reasonable levels and such, but the oral arginine for us was a big mistake. And it is possible that it contributed to Matthew's weight problems. I'm not sure what else they should have/could have done in our case, but we avoid oral arginine like the plague now.

[rainsplats]

thank you.

Seraph has a cardiology appointment monday. Hopefully I can get him to take her off it. I'm not sure why, but the R-gene just makes me uncomfortable.