So Kaylie has been diagnosed with Chiari for one month and twenty days. Every day I either look at something new about Chiari, or reread something about it. A lot of research, and listening to people's opinions can go on in a month and twenty days. When your child gets diagnosed with a rare condition, you read all the well known sites... like the Mayo Clinic, Mayfield Clinic, ASAP, Conquer Chiari, and other well know hospital/university sites. They all say seek a specialist with experience for this condition. Then there are all the support groups. Sometimes I think they are great, because I don't feel alone in, that my child is experiencing a certain symptom... or I get feed back on how others have handled issues, or school activities. But sometimes they can be extremely overwhelming. You have all these parents from all over the United States, even from other countries, just trying to figure out what neurosurgeon they should take their child to. There are a lot of opinions given out on doctors. Almost to the point it makes it hard to read... because you then start questioning your choices. I listen, read it all, and take it in... and look them all up. I can almost tell you by name who is in what state that people talk most about. But all that doesn't mean anything. You, as the parent are the only one that makes this choice. I have said this on my support page of this blog... to do your own research, this is just mine. How one doctor may be right for one person, doesn't mean they are right for another. In general I think they are all good, some yes, better than others... but I do not think there is "one" expert... or the "best". I know I have used that word, "best" many times... in, "I want to find the best doctor for Kaylie".... every parent wants that. And the only time I think you can use that word in this situation... is when you know that doctor is best for you. Your heart tells you. Your gut tells you. All your hard work finding them, tells you. I think most parents narrow it down to a top two or three doctors, in our case...two. We will see both of them, and then go with what are heart tells us. And that's when it will be the BEST for Kaylie.
If I have any parents out there reading this blog from my groups... all I can say is I would take with a grain of salt. Read the info, but find out for yourself. And to not let anyone tell you, who you should or should not be seeing as your child's doctor. You know your child, and what is right for them...and that's all that matters.
Wednesday, May 16, 2012
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