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  The Cain Foundation Forum  Discussion Topi...  Personal Storie...  questions about BOR syndrome
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New Post 5/26/2013 2:10 AM
  loriranee
1 posts
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questions about BOR syndrome 

 Hello..My son is currently being evaluated for BOR syndrome..however I have a few questions for those who have alot of knowledge and experience with this syndrome. I have researched the symptoms and I notice that kids with BOR can have cysts in the neck..my question is can they also have cysts elsewhere in the body with this syndrome? So far the Dr. ordered a kidney ultrasound,a full body x-ray and bloodwork of course..A few months ago we found out that my son who is 13 has a unicameral bone cyst in his heel..He has a great deal of pain and discomfort from it and also complains of his other foot and achilles tendon hurting. He saw an ortho Dr. and the Dr.wanted genetic testing done before we considered the possibility of surgery to have cyst removed. Now that is on hold again,because when we met with genetic dr. she said our son also has a short heart murmer,so next is getting an appointment with cardiologist. The Dr.ordered the full body x-ray to check for other cysts he may have in his body as well..not sure if the xray will show for cysts,because we only found the one in his heel through an MRI. My son also suffers from mild to moderate bilateral sensorineural hearing loss and has needed hearing aids for 6 yrs..I am trying to get as much information as I can at this time and was curious about symptoms and characteristics for this syndrome. Any information would be greatly appreciated! thank You :) God bless...

 
New Post 6/1/2017 10:34 AM
  Mamamar
6 posts
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Re: questions about BOR syndrome 

 I had one neck cyst removed at age 1 since it was discharging a bit. The other one went unnoticed until my teens when I noticed it would sweat more in one tiny spot. I am 36 and have never had any other cysts in my body. 

How are things going with your son, I'd love an update. Can you share more about the specific kind of neck cyst he has/had?

 
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