I realize I talked about attending the Lowe Syndrome conference in my last post, however, I also attended a session regarding the growth hormone and what we’ve decided to do after going to that session. As a parent of a special needs child, you want to get as much knowledge as you can absorb in the three days you are there. What options do you have when caring for a child with Lowe Syndrome and will they benefit my child?
To be specific, one of the sessions I attended during the conference was about the benefits of the growth hormone. Boys with Lowe Syndrome are typically smaller and don’t grow as fast as other boys. I would love Noah to be the age appropriate height of other boys his age. Noah turned four this past July but to look at him, he looks no bigger than a two year old. People are often surprised at his age but understand once I explain. Growth and LS boys vary but the majority of the boys are smaller. There are a few boys who are tall and then there are some that are the age of 21 and look 10.
This is what I came away with regarding the growth hormone. It’s completely up to the parent to make that choice because sometimes it works and sometimes it doesn’t. One of Noah’s doctors actually advised us against it. In her opinion, not enough research has yet been done to see if the growth hormone for a Lowe Syndrome boy is a good idea. Noah also has scoliosis so we have to factor that in as well. There’s back and forth on that too. In some cases I’ve read it made the scoliosis worse and in others, the back got straighter and less curved when given the growth hormone. However, it’s just not always guaranteed that it will work. It depends on each and every child and how they react to the growth hormone when given to them.
The biggest thing I want is for Noah to be as happy and healthy as possible. That’s what matters to me. Noah is a very happy boy. I don’t think he’ll personally care whether he’s taller or not so again, it’s really something I think my husband and I will ultimately decide for him. As it stands now, we are not considering it as an option. He’s our happy, little “big” man and that way he’ll stay. It could be something we’ll revisit in the future but for now, we are all happy the way Noah is and we don’t want to want to try and change him for the unknown.
I’m not telling other parents NOT to consider the growth hormone for their child. I think it’s something you have to figure out on your own, get some expert advice, talk to your doctor and weigh ALL the options to make that decision. Go with your gut and do what you feel is best for your child.