Hal was accepted into the ceftriaxone trial and started it in October 2010. We think he is on the real drug, because he developed gallbladder "sludge", a side affect of ceftriaxone, after 6 weeks on the drug.
He has been on the trial for 5 months, and has continued to progress and weaken rapidly. Not encouraging.
Would work well, I expect, if the PALS actually had Lyme disease or some other infection that responds to ceftriaxone, and was misdiagnosed. . .but the hoped for mechanism - lowering glutamate - doesn't seem to help Hal. And again, there might be different forms of ALS, and some might respond to the ceftriaxone.
Hal thinks he will withdraw from the study when when he has the trache.
In terms of lifestyle changes - we have to cover the central line with plastic and waterproof tape when he is showering. He cannot submerge himself in water. We need to be regular about the times for the drug administration. We need to keep the syringes frozen. I need to be able to change the dressing and connector to the line every week. Administering the drug and doing the dressing change requires a very clean environment - way different from caring for a g-tube. Traveling is challenging. (The study protocol does permit a couple of days off for doing things if it is only periodically, though. ANd you still need to flush the line with saline)
It is not so difficult to comply with the study restrictions now, because Hal is restricted more by his weakness than by the study. But at first it did keep him from doing things he wanted to and could still have done - like swimming, showering independently, and traveling.
