As I mentioned in my last post, on June 26th we had to rush Anja to the emergency room. Lisa and Anja’s doctor were concerned about an odd symptom. Anja was having strange arm movements on the right side. She wasn’t aware they were happening, but they were constant and interfered with her ability to do most anything with that hand.
That night in the ER was traumatic, to say the least. Anja had to endure multiple blood draws, IVs, a lumbar puncture (spinal tap) as well as a drug that played with her mental state, confusing and terrifying her. After about 8 hours in the ER, Anja was admitted so they could try to figure out what was causing these movements.
The next week was full of testing. CT scans, X-Rays, multiple MRIs, and many others were run, examined and often run again. Children’s Hospital was amazing. We had literal teams of doctors coming into our room to talk to us and examine Anja. What was impressive to me was the fact that these doctors didn’t just walk in, get what they needed, then walk out. They stayed, answered our questions, and spent quality time with us and our daughter. Amazing.
Our experience felt eerily like an episode of House. It seemed like every test either came up with nothing when they expected something, or it came up with something when they expected nothing! The movements on her right side are something called Sydenham’s Chorea. This is something that is often a key symptom of Acute Rheumatic Fever (ARF). This is very rare in the US and is considered a third-world disease. The odd thing is that Anja has never had a strep infection which is the cause of ARF.
They ran the first MRI just to rule out anything neurological. But of course, since they were expecting to see nothing… One of the most startling moments of our hospital stay is when the Neurology team came in to tell us that the MRI revealed “spots” on the brain and that they would need to run additional tests. As of right now, we believe that these spots on the brain are lesions that remain as a result of micro-strokes that Anja has experienced. This is a bit alarming as ARF typically has no neurological involvement.
Her heart, on the other hand, shows the classic signs of ARF. The cardiology team was able to verify that there has been permanent damage to the heart that has resulted in one of her valves being compromised. Fortunately we caught this early enough that immediate valve or heart replacement is not necessary. If Anja hadn’t manifested the Sydenham’s Chorea, within six months she could have went into heart failure. God is good!
Although we still have more questions than answers, Anja is now home! Her symptoms remain, although they have become more subtle. One of the more challenging symptoms would the behavioral issues. But knowing that these issues are a symptom helps us be more patient. This too shall pass! How can you pray? I’m glad you asked.
Pray that the damage that has been done to Anja’s heart will stop as a result of treatment. Although this is a condition that will require life-long attention and medication, if we can stop the heart damage, no surgery will be necessary. We will be seeing a cardiologist in a few months to see how the heart is doing. They are optimistic, as are we. If her heart stays the same, we’ll just need to continue medication and see the cardiologist every six months to check on things. If it declines, surgery is the likely response.
We will also be seeing a neurologist again to follow up on the unexpected micro-strokes. Pray that testing will reveal no new lesions, and we can walk away from this mystery unsolved, but no longer in danger.
Finally, pray for Lisa (and me). We need to find peace in this storm. Thank you for all your kind words, cards and emails. You are a blessing to us!
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