tuberous sclerosis complex anyone? not sure i can take much more

[Lovely Momma]

weve been going through the diagnosis process with my DS3 who they believe is having seizures (dx: juvi myoclonic epilepsy) but they recently pointed out his birthmark (aka ash leaf) that glows under woods lamp evaluation. We have an appointment with genetics this upcoming wednesday (Which is also LO birthday) we already know he has ehlers danlos syndrome like his brothers and finding this news out is devastating.. My second son has Familial Mediterranean Fever.. DS3 has been on an apnea monitor for months due to irregular heart rate (goes dangerously low), stops breathing in his sleep, they think his unusual behavior is small seizures... im not sure i can take another insane diagnosis i know nothing about does anyone have experience with this, TSC?!


Eta: we saw genetics and he was diagnosed with fmf and eds like his big brother. The seizures are likely causes by inflammation in the brain (fmf causes inflammation) and we were instructed to start colcrys which should resolve low hr breath holding/apnea and seizures. I'm so relieved it's a condition I know!! He believes the woods lamp evaluation are skin lesions that may be a marker for the genetic condition/mutation the kids have as ds2 birthmarks also "glow"

[lotstolearn]

I work in genetics so don't have experience with a child with it but certainly know the medical aspects of it. Has your child had an echo?

[Lovely Momma]

yes, hes had an echo which was unremarkable. structurally his heart looks fine (murmur, but whatever its just noise) he does have major irregularity in his heart rate but they havnt really done anything about it besides constant rechecks (quarterly)
.

[Lovely Momma]

We have an update