Building up Reinforcements for Ryan

Ryan had a follow up with his specialist at Waikato Hospital last week. He is following a strict ketogenic diet where he can only eat 2x a day, he has very strong will power not to deviate from what is allowed. It is obvious coming so close to death from seizures has strengthened Ryans mind so he really has the will power to keep at it.

He's still getting used to going to hospital every 4 weeks for 2 days of infusions but these along with the ketogenic diet have greatly decreased seizure burden.

His specialist is changing the infusions to 3 weekly, the goal is to try to ensure immunoglobulin levels stay higher in his body to prevent the clusters of seizures he has at week 5 when they've worn off. It takes about a week for levels to rise so the treatment window is getting tweaked. Ryan has gained weight & strength. He isnt attending school regularly but has been in socially to be around students & things are being put in place to try and help him attend his school ball. Having battled refractory epilepsy since age 12 Ryan has missed out on so much which has caused social isolation while peers around him gain further independence. We would love to see more opportunities for him to meet people and be included in things as people have been scared of his seizures. Thank you to everyone who donates blood because it is the donor immunoglobulins providing treatment to Ryan every 3 weeks to correct his immune system problems which lead to seizures which dont respond to medications.