Reply To: Granny seeks help for Mentally disabled and deaf adult/child with CIDP

December 21, 2018 at 11:43 pm

I hope I’m doing this correctly. In response to Electra, thank you for your input. One never knows exactly what to say to another person’s distress.

I’m aware of weighted blankets. An acquaintance has made several for autistic children she has met but I hadn’t thought about one for Jason. I sometimes forget his intellectual age because he is a 6’2″, 180 lb guy. He does have a favorite comforter plus a couple of stuffed animals that we hope will be helpful during his infusions. I like your play-do suggestion and I think it is worth a try although a bit tricky since his hands are “fisted” with full use of only his thumbs and first fingers. I’m in the process of loading videos and slide shows of family and pets onto his Nabi tablet. If there is sufficient space I will download a u-tube of wrestling match. His Nabi already has videos of Monster Jam and remote control car races. These are his favorites for entertainment. Crossed fingers they are sufficient distraction during his infusions.

Today I spoke with a knowledgeable gentleman who pretty much validated the doctor’s diagnosis of CIPD. Hubby and I were wondering/hoping if there were a chance that the doctor was wrong. Limited insurance approval arrived today. It appears that we will soon join the “IVIG infusion world”. Now to find a means of communicating to Jason what is about to transpire. I wonder if there is a video of the IVIG procedure available. I’ll ask the organization and search on-line. This may or may not be helpful. If you or anyone has any suggestions we welcome them.

Thanks again for responding to our inquiry. You don’t know how much it meant to find your message in my mail box. You’re a jewel.