14/10/2026
Been up since midnight how on earth does this kid have SO MUCH ENERGY 😵💫😵💫🫠
So a little update to report back from her EEG hospital stay and brain MRI.
First thing : we trialed a new med that we think was working for Rian but in typical Rian ways she developed a nasty drug rash from it sooo we are no longer trialing it….
EEG : Not great but that’s the norm for her : basically it means the brain’s electrical activity is slower and less organized than what neurologists typically expect to see during wakefulness. Some more info on her EEG coming up in another post….😵💫
she was up the full 30+ hours for it and again in typical Rian fashion she didn’t do what I needed her to do to see if some of these new movements are seizure related…
MRI : well it’s never good when the head of the CDKL5 Center of Excellence says Rian breaks a lot of the rules of CDKL5 and she presents differently than a lot of the other patients with her diagnosis . Long story short it goes hand in hand with her EEG findings . From comparison to Rian’s MRI a year and a half ago : she has progressive cerebellum atrophy - part of her brain is shrinking faster than normal and unfortunately we do not know if it is degenerative… more on that to come . Her neurologist said to us that this is seen with kids who are having uncontrollable seizures daily and that she has never seen this with a child who has her seizures for the most part under control … her neuro is honest with us - and transparent and for a doctor of her expertise and knowledge - my child has stumped her again . Rian is in her own entity….
Kid … you are killing me over here …
So for now and as long as we can we will continue to enjoy these laughs , smiles , schmooshy face hugs and kisses . Rian’s been doing so great in her therapies and we will continue to celebrate her little victories ❤️
Danielle McCann the little norwegian candle co