- Biopsy of his bruising was done on 9/24. Results came back negative. This rules out the vasculitis. This is a definite relief.
- On 9/28 he began having leg tremors. Anytime he lifts his heel off the floor, his legs shake uncontrollably. They are saying that this is because of the myoclonus. It's hard to see him have this new symptom, and in the future, if it gets worse we can do medications to ease the symptoms.
- We saw Rheumatology today and she thinks that we need to revisit the Asialo-GM1 results. (If you remember, this was the result that came back "equivocal". His immunoglobin G levels were low and it doesn't make since that his GM1 results were 49. She thinks it is likely that his GM1 value is actually higher. This means we are still on the path trying to figure out which autoimmune neuropathy disease he might have. Both neurology and rheumatology saw him together today and they just don't know. None of the "puzzle pieces" are fitting together and they don't give us a clear picture of his diagnosis. I am sure is just as confusing for you as it for me to read all of this medical jargon. They suggested that once Mayo Clinic reaches out to me, that I let them know that his IgG-IgM was 49 and that his total IgG was in the 400s. And, maybe Mayo can shed some light. I plan on reaching out to Mayo this week to follow up.
- IVIG should have worked by now. No improvement is noted yet. We will continue the IVIG for 6 months, as CHOP recommended, and hope that it starts working.
- We saw nephrology today, and they were pleased with his blood pressure and his weight loss. Another positive for the day.
- He had an echo today to ensure things are ok with his heart. His two blood pressure meds are controlling his blood pressure, but his heart rate is still high.
Braeden has felt crappy for the last few weeks. They blame the IVIG and being off steroids.
In other news, most will agree that puppies are the best medicine. Especially cute ones like Ms. Daisy Penelope who will be joining our family around the 20th of this month. (Finally another girl in the house!!)
Thanks for all the prayers and love as we continue to chug along.
#BraedenBrave
#MrUnlucky
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