September 22, 2022. Feeling hip

After the AVN hip pain scare, we decided to preemptively start Alyssa on hyperbaric chamber. Hyperbaric chamber is an oxygen saturated pressurized tent, more commonly known to treat divers with “the bends”. Fortunately, brother’s martial arts instructor got one this past year and is renting out sessions. She will need to do about 80-100 one-hour sessions, thrice a week. Oddly, now her other hip is starting to hurt, so we are following up with that. Her orthopedic surgeon still doesn’t know what it is, as both AVN or impingement are possibilities. We are to follow up again in 2 months.

We considered several options, as her proteins are still creeping up.

• Don’t do anything and see what happens to her urine protein.
• Increase her prednisone to the lowest level that keeps her urine protein low.
• Treat her with the anti-complement drug eculizumab. This would require about a one hour infusion every two weeks for about a year.
• A less standard therapy would be to treat her with the anti-B lymphocyte drug Rituximab. It would be given as 4 weekly infusions over a month. The infusions take several hours.

Then Iowa nephrologist office called and said she may be eligible to the join the C3G trial next year. This trial medication actually addresses C3G complement, which is the source of her problem.

So we are blessed with options. At this point, we choose to continue to wait and watch, and hope to start her on the trial in 2023.

She had gotten sick last month, and was borderline feverish on and off for a couple weeks, with a wet cough. She tested negative for COVID (3 times), strept, flu, and RSV. So it must’ve been some kind of cold. It was tiring for her, and she is glad to be over it. It was a good reminder for her that getting sick sucks, and it’s hard for her body to deal with infections. I also had some hand injury recently, so her little brother stepped up in helping us out at home as we recovered. They just returned to school. She’s very happy. Brother was not so excited, but is warming up to school.