Is it the diet? The meds? The syndrome?

Monday saw us in the pediatric neurologiy department of Sha'arei Zedek Hospital to bring Haya to the doctor and the dietician - with a medical student observing us. 

We related how sleepy and often "zombie-ish" Haya has been and how her assisted walking has deteriorated. 

Before her Status Epilepticus hospitalization episode in March, she could walk 45-60 minutes. Usually, these days she can't even cope with a half an hour of it. At that point she begins either trembling, seizing or slumping over. 

We all agreed that the cause of her deterioration - despite the dramatic drop in daily seizures - could be due to any one of several causes: the Keto diet which we started during that last hospitalization; the medications; or just the progression of her syndrome. 

The neurologist, though, was doubtful that the diet is the culprit since it isn't known to have this detrimental effect.

Nevertheless, the dietician did propose a few changes to it which she thought might improve Haya's functioning. One is raising her MCT oil dose to eliminate Haya's extreme constipation. The second is increasing the percentage of carbohydrates in her Keto meals since her Ketone levels have been satisfactory. (Yay for that thin silver lining!)

Somehow, thank heavens, Haya's floating and calm in the pool have remained unaffected by her general downturn. That gives me a huge boost. 

Here she is the very moment her body slid into the water; no need for her to acclimate; just immediate calm.