Our news are bad ....
suspected necrotizing leukoencephaloelitis (NLE) possible Necrotizing meningoencephalomyelitis (NME)
They did find extra fluids.
Neurologist said that this is worst case of GME (aka general GME) , and .... we do not know how long she will live - a few months or maximum a couple years.
I have not read about it yet, but doctor said that I should be still optimistic.
she was given new medication, including prednisolon, but they increased doses A LOT. Polina is 6.7 pounds only.
the list of medication:
1. prednisolon 3mg/ml, dose increse to 1ml for 5 days twice daily, then reduce to 0.5 91.5mgtwice daily for 3 weeks, then .5 once a day, then .5 ml every other day.
What I do worry that she is much better after prednisolon, EVEN more active then used to be. IMO, dose already probably high for her, why MORE????
2. Clindamycin. 25 mg/ml. Twice 3ml. Antibiotic. 3 weeks only
3. Doxycycline. 10mg/ml. Twice 3ml. Antibiotic. 3 weeks only
4. Zonisamide. 25mg. Twice one pill. |