LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
My son is 4 and has been on Kanuma since January. He has a port and receives the treatment every other wednesday. We are from Indiana so we did 6 months in indy at the children's hospital, but now have just been cleared for home health. We call our infusions Port Party day. The first 2 months I made it a party and had balloons, presents and cake for him while he was receiving his infusion. I did not want him to dread it, and it be a fight to go since it is a life long thing. Now we don't make it a big party but he does have toys that he can only play with during port party. We requested that he had the same nurse at each infusion, and that seemed to help him feel very comfortable. Talk with the infusion room before you start and ask what you can expect or what your allowed to do (how many people can be with you, if you can have a private room to start, etc). It is extremely scary at first but soon it will become a regular part of your life. Good luck!