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11/23 Propionic Appointment Result

November 23rd I had my last Propionic Academia appointment down at Children’s Hospital of Philadelphia. Overall my laps came back better than they have over the past few visit’s. My ammonia level was at a 17 which is really good compared to my last few visits where it was in the 50’s.

Most of my other levels came back good although there was something that came back high. I don’t recalled what it was but they actually reduced my Propimex 2 which is surprising but I view as a good thing. My weight was one 132 which the doctors said was good but I shouldn’t lose anymore.

We also discussed a upcoming drug study where I would go down every weeks for 10 visits or more and have a infusion. I would have to stay overnight each visit. The drug is not proven but could improve some or all symptoms of PA. Of course as with any unproven drug there could be side effects as it hasn’t been tested on humans. It’s something to think about for sure.

Overall the appointment went well. I haven’t had a ammonia flair up since July and I’m on a current streak of 35 days in row so I’m doing something right!

Love and light everyone ❤️

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