Tuesday, May 1, 2012

Learning about your special needs child!

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When Rory was inutero, doctors had no idea what was wrong with her leg.  Doctors informed us that our daughter had everything from down syndrome to brittle bone diseases.  When we heard that she may have CFD, I had no idea what that was and had to read everything I could about it.  I used a resource called Pubmed, and I wanted to share this website with other moms out there that could be in the same boat as me.  I strongly believe one of the best things  you can do for your special needs child is to educate yourself about their condition!

This website was created by the National Library of Medicine and it includes millions of citations from medical journals.  When I was looking up information on CFD, I wanted the cold hard facts from doctors that specialized in her condition.  I ended up finding many answers to my questions using this website.  

A side note, regarding this website, is that these articles are scholarly medical journals they can be difficult to read.  Some of the articles will want you to pay for the citation.  To avoid paying for the articles, I wrote down the citation and called a college library and a medical library to see if they had the journal articles available.  Often times if you search in Pubmed on the college’s computers you have access to the articles because the college will pay to subscribe to the journals online.  In my experience, college and medical librarians are extremely helpful. 

Once at this site, you can type in anything you want in the search bar.  When you begin typing, Pubmed will try to autofill what you are searching (which is good for me since spelling is not my strong point).  Underneath the search bar, there is a “limits” link, if you click on that you can limit what you are search for by publication date and also if you want a free full text article. 

One thing I love about this website is the "my NCBI"- at the top right hand corner.  The account is completely free, and if you enter an email address you can get emailed when a new article has been published about your topic.  For example, when I searched for Congenital Femoral Discrepancy, after my search results popped up I clicked under “Save Search.”  It will ask if you would like to get email updates and how frequent you would like to be emailed.  Now, every time someone publishes a new article on Congenital Femoral Discrepancy it will email me.

As I stated above, these are medical scholarly articles, so they are NOT easy reads you can whip out in the 10 minutes you have after your kids go to sleep and before you crash on your pillow at night!  However, every little bit of information helps, even if you only read the article's abstract.  I have even been known to highlight articles and write questions in the margin so when we do see Rory’s doctor I have all the questions.

Like I said before, I feel like being informed is one of the best things you can do to for you and your special needs child.  Please feel free to visit our website and email me with any questions you may have about the site!  And remember... NEVER be afraid to ask your doctor questions!  

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