Eli has sturge Weber syndrome explained here; https://www.healthline.com/health/sturge-weber-syndrome#symptoms. Here is a blog post that gives more details of our journey; https://v4.simplesite.com/#/pages/440945449.
Have had follow ups with each of our specialists.
Eyes are still looking good (no sign of glaucoma yet).
Dermatology says we have to be 6 month seizure free before they will start treatments to lighten the stain. Also waiting to see if insurance will cover anything for that as some may say it is cosmetic.
Neurology is having us try to get him off 1 of his meds in hopes he will stay seizure free on his other seizure med, but chances are he will need another one down the road. Crossing fingers all continues to go well, but will go back in January for more follow-ups.
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