Sodium channel blockers - anybody familiar?

[DizzyGirls]

Is anyone familiar with sodium channel blockers?  My daughter's PCP thinks that her sodium channels are remaining open too long and are thereby causing sympathetic hyperexcitability.  He's been doing his homework.  I know there are calcium channel blockers and potassium channel blockers, but is anyone familiar with the sodium channel blocker?

[sue1234]

I'm not familiar with this, but would love for you to continue posting on any findings your doctor has, as in treatments and if they work.  I love it when a doctor thinks outside the box!

 

[SarahA33]

hi DG! There's a syndrome, Wolff-Parkindon white, It's a pre-excitatory syndrome. My guess is they'd have picked this up on the EKG's by now but you may want to check out when you have a sec. Have you tested her calcium recently? Those can impair sodium channels, too. All the best to you and the girls!

https://ghr.nlm.nih.gov/gene/SCN9A#conditions

[DizzyGirls]

Hi Sarah!

Thanks for the thought!  I did actually run this by our neurologist who had ordered the girls' whole exome sequencing and he said that there was no variation in the SCN9A gene.  What we are finding out very recently, is that she most likely has craniocervical instability and/or Chiari malformation.  She is most likely looking at surgery.  She can hardly hold her head up and it's causing some really bad effects.  Our pain doctor had a colleague who is a neurosurgeon and he walked us through to get an appointment with her on Wednesday.  We think, anyway, that her nerves that come through the spinal canal are all being impinged upon, thus the huge variety of autonomic and other neurological problems.  She's a real mess.  Thanks for your thoughts, though!!