Physical Therapy, Occuptional Therapy, Speech Therapy, Zavesca and Cyclodextrin Infusions (IT & IV) are how we are going to help Chase battle Niemann Pick C.
This is a lot of work for our family and we know it would not be possible if Grandma Donna had not moved in with us to help. We were lucky enough to have bought a big-ol' fixer upper in VT that has a fully finished lower level with a walk out. Grandma has her space but is always thankfully in ours after and before work, cleaning, cooking and helping care for Chase and Cameron.
What's happening with Chase right now?
Chase's first dose of Zavesca (a drug for Gaucher Disease prescribed off-label for NPC) was given on October 12th. He has been experiencing the tummy issues that are a known side effect. Some days its just easier to toss the onesies out! We cautiously report that Chase has been babbling and talking more. On 10/25 his pedi notices this as well. .
On October 4th Chase arrived in Maryland for a visit to the National Institute for Health. We spent a week establishing baseline testing. One thing that we looked at was Spinal Fluid to examine biomarkers for NPC.Beucase we had this testing done prior to putting Chase on Zavesca or attempting anything else we have a true stick to measure progress by. This is essential to research for Niemann Pick Disease. Chase is a participant in the National Heritage Study run by Dr. Denny Porter and RN Nicole Yanjanin.
Chase got ankle boot braces today 11/15 to help with his stance. He has been too weak to support himself for quite some time. He stood unassisted today, holding on to a toy, for the first time in months. The braces will help correct a flat foot and turnout cuased by Chase adjusting his body as neurologic symptoms began. The hope is he may be able to walk.
11/16 A collaborative care conference was held this morning with 7 members of Chase's team to discuss PT, OT & Speech Therapy. He received his flu shot and caught up on his vaccines.
The Tonsils have been put on hold for a chronic respiratory infection, a frustrating Catch 22. His mediport install has been moved to 12/20 and a Bronchioscope will be done on 12/14.
Chase is enrolled in Children with Special Health Needs in the State of Vermont. He has an Early Intervention Team as well as a team of Doctors supporting all parts of his development. He sees a Physical Therapist, Occupational Therapist and a Speech Therapist. They come to our home to help him in his own environment. Clockwise from Upper Left : Scottie (PT), Rebecca (OT), Jessica (Speech), Mark (Director), Janet (Medical SW), Dr. Alicia Veit (Pediatrician) Chase, Mom & Dad
Bottom photo: Jessica & Chase doing speech therapy with bubbles
Chase takes Zavesca once per day. The pill is so awful tasting that it induces vomiting. (We tried it, its the worst thing ever.) To get him to take it we open the capsule up and sprinkle it in shakes and meals throughout the day. If we mess up and he tastes it he refuses whatever it was we tried to hide it in for days. Its been a challenge. However, we think it is paying off. Children with NPC lose speech and have difficulty looking up without tossing their heads back a tad to compensate. Chase has begun babbling a lot and simply looked up the other day when asked to smile for the camera.
Chase got braces for his feet and ankles on Monday 11/15. This picture was taken11/16. He has not been able to stand without wobbling and collapsing instantly in months. Dad is supporting his back in this photo but what is significant is that he is able to stand and even hold a remote control at the same time.