Advice - NMDAR subtle acute presentation
My child had blood tests on Friday to start investigation for NMDAR encephalitis. She has had major symptoms on and off for 3 years following a fall at school. She’s young and also has a reproductive malformation that’s linked to this condition.
I can’t get ED or our paediatrician to see it though. She isn’t deathly unwell yet. We presented to ED last week and got sent home, then saw our paediatrician who said get a blood test and if it’s positive, then we’ll get a lumbar puncture.
She’s got so many symptoms but could also do an amazing art work in the paediatricians waiting room, passed the basic neurologic screen in ED and the initial blood tests (just basic full blood exam and inflammatory makers) are absolutely perfect. The anti-NMDAR and anti-VGKC antibodies blood test will take 3 weeks for results.
I’m closely monitoring her for further deterioration and keeping track of her symptoms - she’s developed nausea, neck soreness, occasional confusion (she couldn’t name the states of our country/got very jumbled), irritability, fatigue etc, but it’s subtle. I can see it, but it’s easily dismissed by others.
What should I do? I’m willing to go back to ED and push harder for them to take this presentation seriously, but also strongly suspect we’ll just be dismissed and discharged. We have been keeping the paediatricians rooms up to date and asked them to please consider getting the lumbar puncture earlier, but it involves admission to the tertiary hospital and I suspect there may be some underlying politics/paediatrician doesn’t want to action it without solid evidence from the blood tests/doesn’t believe us.
Does anyone here have any suggestions? We’ve ridden out acute stages of this condition before, not knowing what it was. I’m weighing up going back to ED and just trying again.