It seems very weird to be wanting a surgery to come soon but in this case, we do! Byron's teacher let us know that he can no longer be in school without an aid. He is being disrespectful, disruptive and in her words "He is not learning anything, He is not retaining anything." This is classic ESES regression.
For so long we didn't see regression with Byron's ESES, but now that he is also having clinical seizures at night as well, his poor overworked brain can no longer handle it.
We have introduced CBD oil into his daily medication regime, which seems to be helping a bit with attention. We are using Charlotte's Web, Advanced Formula. We give him 1ml in the AM and 1.5 ml in the PM. Each .6 ml has 50 mg Hemp oil. Each dose is about 90 minutes from his other medications.
This CBD oil costs about $250 per bottle, not covered by insurance, but at this point it's worth it. Speaking of medication costs, if we didn't have insurance, the new medication he is on - Onfi - is $1,375 per month.
Byron is on Medicaid due to the extent of his disability and it is because we live in New York State that it pays for most everything.
My iPad created this little musical slide show for me this morning. It reminds me of what a sweet boy he is!