04/30/2023
Off to Ohio State for Jacobs 6th dosing of Ion363 (Jacifusen), over 4 months since his previous dose. His weight is now 137 pounds or 62.3 kg. The dosing was perfect, no issue!
Dosing side effects would include a headache for the next several days.
04/26/2023
Back to Dunbar Medical for more blood work, via LabCorp. ALT levels now down to 229!
04/14/2023
Dr. Kolb called to push Jacob's next dosing out to May 1st! Huis liver ALT levels are still entirely too high and the sponsor is concerned. They fear ion363 may be, at least partially, to blame for these elevated levels.
Since two of our previous lab results from Marshall Health had been compromised, I took Jacob to Dunbar Medical to allow LABCORP to perform the bloodwork. This strategy paid off, because the ALT levels were down to 245... a 123 point drop since his blood work two weeks ago!
Another answered prayer!
04/05/2023
Our upcoming dosing, scheduled for April 10th, was postponed til April 17th, due to Jacob's elevated liver enzymes. We stopped the drug, Riluzole, back in March, but his numbers are still very high. On this day, April 5th, his readings were 368 (ALT)!
03/22/2023
Back to Ohio State University – Wexner Medical Center, in Columbus. We saw hematologist, Dr. Archarya. Jacobs ALT liver enzyme levels were now up to 244. Normal ALT levels should be around 30 to 40. Certainly not 244 which was borderline cirrhosis.
03/10/2023
Jacob's breathing had dropped dangerously low and he required non-invasive ventilation. This is a ventilator that he was able to wear at night, much like a CPAP. The astral ventilator is amazing and Jacob loves it!
03/01/2023
Jacob's bloodwork has been showing indications of a fatty liver, and very high liver enzyme numbers. Today we had an appointment in Columbus for a liver ultrasound and additional bloodwork. Ionis is concerned about the liver numbers. We are convinced it's from the drug, Riluzole, and not the clinical trial.
