While we were researching and preparing for my first round of IVIG, I found a therapeutic play kit for children with Primary Immune Deficiency. The makers of the play kit happened to be Baxter, the manufacturers of GammaGuard, which is also the infusion I received. Stiff Person is rare - only around 1 in 1 million are diagnosed. The actual occurrence might be higher, especially since most doctors have had to look it up when I've mentioned it. I have had to find resources where I can, and PID is much more common.
Anyways, I figured that the kit would be a good idea for Emma. She has been with me for blood draws and has been more curious than anything. The prospect of her seeing me tied up to an IV drip and not feeling so hot bothered me, though. I would rather her feel prepared and understand how Mommy's treatments work.
Here's what Baxter has to say about the kit:
"This one-of-a-kind resource helps families learn to cope with the medical environment through therapeutic play. The kit contains Igi V., the Therapeutic Play Doll, a storybook for children, a guide for parents, real medical equipment, and Igi V’s Medical Records Activity Journal in a convenient bag for easy travel.
Developed for Baxter by Certified Child Life Specialist Adina Bodolay and a family living with PI, this new resource can help families:
- Learn strategies to cope with the medical environment
- Gain a better understanding of medical procedures including IV starts, CT scans, and blood draws
- Express thoughts and feelings about living with primary immunodeficiency
- Educate siblings, children or grandchildren of adult PI patients, as well as children with PI"
The kit came in the mail today. It includes Igi V, the play therapy doll. Also included are books for the parents and children on IVIG therapy, and a kit with real medical supplies. (Needle, tubing, bandages, you name it.) I'll have to read up before I bring up out the doll, but I think that she'll enjoy it.
The only downside is that because they are real medical supplies, the child must be supervised at all times. Baxter could have created a blunt needle that went into an open "vein". Oh well - the kit was free and it is much appreciated. It also bothers me a little that they have plenty of money to send free books, infusion tracking packs, and play therapy kits...all because the cost of the medicine is outrageous. One infusion costs around $12,000, depending on your weight, diagnosis, and location.
When we bust Igi V out to play with, I'll make sure to get some pictures. :)