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  The Cain Foundation Forum  Discussion Topi...  General  possible BOR in my 11 month old son
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New Post 2/8/2013 12:35 PM
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possible BOR in my 11 month old son 
Hi everyone. My 11month old son was just confirmed with having a ear pit and a lower neck pit. We are going on the 14th to check and see if his kidneys are alright. And going to see if the pits go all the way through. I know the one on his neck does, because occasionally it leaks fluid. When he was born I had assumed it was some type of milk pimple and that he would groe out of it. I was wrong, after 11months of it I decided that I wanted to know what it was. I had googled some things and came across branchial cleft abnormalility. Gotcha. Then I noticed a small neetle like hole at the top of his ear. I googled that 2. Preparticuliar pit (not sure I spelt that right.) Gotcha again. I started to worry. So I set up an appoitment with my peditrician to confirm or deny my suspicions. They were confirmed, and what's worse is the doctor treated me like I was stupid for asking! We got into a heated arguement and she tried to tell me that if anything was wrong they would have caught it before he was born. They didn't catch the fact that he had webbed toes. They didn't catch the fact that he had a ear and neck pit. We ended the appoitment with a referal to a radiology clinic to check on his kidney and thyroid. I'm so upset that they would possibly but his life in danger like that. If they had any suspicion they should have checked him so much sooner. If any other damage is done when we check is it possible for me to sue the hospital he ws born at, and the peditrician for negilance?
New Post 2/8/2013 1:06 PM
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Re: possible BOR in my 11 month old son 

 Hi there,

Thank you for your post. I'm sorry to hear that you have had such a bad experience with this whole saga. For starters BOR Syndrome is quite the task to diagnose. Most Medical Profession know nothing about BORS. This has been my experience as with many others. It cannot really be diagnosed during pregnancy unless you go to the extreme of having an emnio and sending this off to a Research Hospital which can diagnose BORS. There are only a couple who do this mostly in the US and it also can take several weeks/ months to get a result. I also know that many cases don't even pick up the gene mutation even though you can have BORS! There are things you can look for in pregnancy ultrasounds such as small kidneys, malformed shaped ears, cleft palate - all of his can be related. Usually the giveaway when your child is born is the ear & neck pits. Majority of doctors do relate this to BORS. Maybe they knew nothing before of BORS but I find that they research themselves and come up with this syndrome. Your Son needs to have a hearing test and kidney testing. It's about half half I find with people who do have kidney issues to people who don't. Fingers crossed for your little man. In regards to seeing this is only my opinion, I'm not sure you could do much re the hospital but as or the Peditrician and the fact that you went back to her and she was not only rude but shrugged you off in regards to your diagnosis I would definitely be taking that further. That's just me. A mother knows their child. Most Peds know that a mothers intuition is usually correct. 

Please keep in contact with us. Would love to hear from you again. I hope I could help a little.

kindest Regards

Fiona Cain 

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