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.
2 ambulance rides later and we ended up back in Riley last night due to him having seizures again.. theyve upped his medicine and hopefully we go home tonight.. been a long couple of days.
SWS is a complex thing which I have included a link that explains more. I also created a blog to better document our journey as it is a very complicated one. Eli is strong and is doing great, but it is very emotionally taxing on mom and dad. We have a great support system, but medical bills definitely add up. Insurance helps A TON, but doesn't cover it all. Which definitely doesn't help anything to try and figure that out on top of everything else that as been thrown at us.
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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