Hello, I have two little boys with severe hemophilia. My seven year old has recently experienced a few muscle bleeds that has ended up putting him in the hospital for about 4 to 5 days. I find it hard once we realize he has a bleed , to keep him off of it. For us putting him into the hospital has helped. The first one he had went on for 8 days before he was put in. This last one was 4 days and then he was admitted. I felt we jumped on this one quicker and the hospital stay wasn't quite as long. I would love to hear your experience with musc le bleeds and any input you have.
Thank you
DeAnn
I am not sure if this will help or not since this is an old post.
ReplyDeleteFrom my experience, just icing a bleed n the muscle can slow or stop it. My parents gave me hand held games or books to read and made me stay on the couch to treat the injury. At a young age you should be teaching the boys that fun can wait. They need to learn to choose factor over fun. It is hard being young and not wanting to set out. I remember crying over missing many activities.
It someone ever misses and activity, try to create a new one at home.
Set the boys down and together explan to them that they need to take care of their bodies to heal faster. Let them know that if they are willing to give up activities that are physical for slower ones, then they will be rewarded. Create a list of activities with them they want to do on the days they make to sit out of playing. Let them cut up the list and put it in a jar. Then on the days they are not allowed to play, let them choose activities from the jar. it may be baking cookies with mom or watching birds at the zoo.
Also, have a rewards jar. Let them have a sticker for each week they take care of their selves first. Then when they get 3 or 4 weeks of good choices, they get to pick a reward from the jar.
Muscle bleeds should not last that long. I have the same factor problems your some do and do not have a muscle bleed last more than a day. i would say your boys are very active to keep a bleed going that long. Try cutting back to more indoor book reading activities. Or have them write and illustrate their own books. Have them put on puppet shows for the family and friends about their hemophilia so they can learn more about it. These are less active but still challenging enough to keep their attention.
Good luck.
Thank you for your blog. I know it's been awhile since the last muscle bleed and that's a good thing. They are starting to understand that they need to take it easy and when they feel anything starting to hurt they let me know.
ReplyDelete