Lu’s fall and the knee fracture may not necessarily be connected to her subsequent symptoms, but it seems like the starting point of the health concerns and doctor visit merry go round we have gotten trapped on. She fell on December 27. Her eye crossed January 6. The third issue began on January 15.
Three months.
Three months and we have been to specialist after specialist, missing school and canceling work and scrambling our schedules. We have dropped everything and run into the city, seeking the best medical opinions and hoping each time for a prognosis. A treatment plan. A return to normal.
Last week we went to a new pediatric urologist in Westchester for a second opinion. I was never satisfied with the first urologist’s diagnosis. She was dismissive and condescending and, as it turns out, WRONG. The new urologist actually ran some tests and physically examined Lu and found something that may not be the entire answer to Mystery Symptom, but is *certainly* a contributing factor. NOT something that first doc’s behavior modification list addressed at all.
We have a new protocol – a treatment and next steps, at least a direction. And we have a neuro-opthalmologist appointment this week and a pediatric neurologist next week and we are just still on our Specialist Visit Merry-Go-Round – this new small piece of the puzzle is not the end, nor a cure all. Still no ideas how the eye fits in. I am a bit mollified at having some new ideas though – New Urologist took the time to LISTEN.
I have such rage at First Urologist. She diagnosed Lu before she walked into the room and did not so much as ask her a single question. She ran no tests and did no physical exam. We could have had this information MONTHS AGO. Months. I don’t know what to do with this yet and my focus is on continuing caring for Lu and getting her back to normal. But my anger is there.
So Progress Report:
- The leg is nearly fully healed. She has no crutches or brace and is back to dance classes. One more follow up with the ortho early summer, but no real concerns here.
- Her eye is the same. The neurologist thought it looked maybe slightly worse at the last visit, but nothing major. MRI found fluid on her spinal cord and lesions on her pineal gland, but it is questionable if/how those are related and neither is anything that there is an intervention for at the moment.
- Third Symptom: Feeling somewhat optimistic that New Urologist and hope her plan will find a solution.
- Cole’s meds are still off kilter – hoping to have the time and energy to focus on switching him to the new option over April break. And further hoping the new med is the right choice for him and is helpful. He has been struggling and stressed.
