Yes, PWS is a spectrum disorder and symptoms vary in severity and occurrence among individuals. While there are many similarities in individuals with PWS, there are also many differences and many degrees in the severity of symptoms (some mild, some severe). Some babies require oxygen, some don’t, some babies/kids/adults have sleep apnea, some don’t, some kids walk at 18 months, others don’t walk until they’re 4 years old, some kids really struggle with behavior issues, others don’t, some are major food seekers, others not so much. Some kids with PWS are more prone to seizures, and many have other disorders they are diagnosed with on top of PWS, such as OCD, autism and speech disorders.
I honestly don’t know where Clover is on the spectrum. I do feel like her low muscle tone is on the severe side. However, she is very smart and witty. She does have sleep apnea, but it seems to be improving as she continues to get stronger. We have been fortunate to not have to deal with seizures (yet), but Clover does seem to have some OCD tendencies where she will get “stuck” on something….usually playing with a tag on a blanket or a piece of string, etc. She could sit there for over an hour just zoning out playing with a tag in her fingers….and if I try to take it away, she throws a fit. I’ve heard similar stories with other young PWS kids. There have been times I have been worried about her behavior, but it’s hard to tell if it’s a typical toddler tantrum, or something more. I try not to read into things too much, but that is definitely easier said than done.
For many symptoms, we just won’t know how they will affect Clover until they present themselves…or not. I don’t know if she’ll be a food seeker. I’m not sure how she will do in school. I don’t know when she will hit the “hunger” phase. For now, I just try to give her all that she needs to be able to reach her full potential and hope (and pray really hard) for the best!!
No comments:
Post a Comment