Sunday, April 30, 2023

04/30/2023 #6 ION363 Dose... FINALLY

 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.



Wednesday, April 26, 2023

04/26/2023 More Bloodwork

 04/26/2023

Back to Dunbar Medical for more blood work, via LabCorp. ALT levels now down to 229!






Friday, April 14, 2023

04/14/2023 Dosing Postponed... AGAIN

 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!



Wednesday, April 5, 2023

04/05/2023 Dosing Postponed

 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)!