Our amazing neurologist called yesterday morning and while he had not personally seen the scan yet, he had spoken to the radiologist and there is something there. #NOTATUMOR, but there IS extra fluid on her spinal cord – pretty much all over, from her neck down to the lower spine. He has referred us to a pediatric neurosurgeon, NOT because he necessarily believes that this will require a surgical intervention, but for another set of informed eyes and a better plan for managing/monitoring/treating moving forward. We will also be bringing these scans when we go to our appointment with the second urologist as this fluid is likely causing some of those symptoms. It is unclear how the eye-crossing fits into all this, but at least part of her issues have a more clear cause. (Me: So is this the reason for everything? This is causing the eye and the [redacted for privacy]?! Neuro: Slow your roll. I’m not really sure how this would impact her eyes.)
To be clear, I was NOT hoping for something to be wrong with my child, but on the flip side, if these scans had been totally clear, then what? The next diagnostic testing they were discussing was a lumbar puncture, and I didn’t really want to put her through that… After over two months of no answers and no plan and a LOT of anxiety, I desperately needed some sort of information. Finding something that seems relatively benign and could be the root of at least some of this was the best possible news.
I’m not crazy! There is a possible reason! We have an answer! We have SOMETHING.
Especially after the appointment with the initial urologist who was completely dismissive and somewhat condescending, this is a much-needed confidence boost. I *know* my child. There is something going on here, and hopefully we will soon have a plan for how to address it.
People have asked if it okay to share these posts – YES. The reason I’m posting here is because SO many people love and care about Lu that it became a daunting task to update everyone individually. Facebook has chronology issues and not everyone is on there, so this is just a quick way to keep people in the loop. I cannot even tell you how grateful I am for your thoughts and prayers and well-wishes. The comments and texts got me through the very long day on Thursday – I feel everyone’s support and really can’t express how much we appreciate it – so this is NOT me telling anyone to be afraid to contact me. Please don’t stop! Just posting here keeps everyone on somewhat the same page.
Dr.Abbottt at Montefiore Hospjtal in the Bronx is excellent. He has been my neurosurgeon for the past 15 years. In case you did not know, I was diagnosed with Hydrocephalus since I was 18 months old. I am here as a resource if you need me.
Thank you so much!
Our family gets how overwhelming and scary this type of situation is. Please know we are all thinking of Lu and the family. We know a lot of people working/living in different arenas of the pediatric field so reach out any time and I can put feelers out.