Comments on: Will the real VACTERL doctor please stand up? http://family.kentuckystudio.com/2007/10/24/will-the-real-vacterl-doctor-please-stand-up/ Just another WordPress weblog Fri, 06 Jan 2012 07:36:19 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Ben Roberts http://family.kentuckystudio.com/2007/10/24/will-the-real-vacterl-doctor-please-stand-up/comment-page-1/#comment-633 Ben Roberts Sat, 26 Apr 2008 15:01:00 +0000 http://kentuckystudio.com/family2/2007/10/24/will-the-real-vacterl-doctor-please-stand-up/#comment-633 I know exactly what you are going through. My son struggles with VACTERL as well. After spending most of the summer in the hospital because of a botched spinal cord detethering, we decided it was important to have a team of doctors instead of individual specialist. <br/><br/>Thankfully, our Urologist belonged to a practice that specializes in Spina Bifida. They have a Spina Bifida Clinic several times a year.<br/><br/>While VACTERL is not Spina Bifida, there are many striking similarities. Now instead of spending our lives schlepping our son from specialist to specialist, he goes to a clinic twice a year and sees all the specialist within a 4 hour timeframe (8 if we have tests beforehand). AND THE SPECIALIST TALK TO EACH OTHER!!!<br/><br/>It is by no means a perfect solution, but it did make our life more bearable.<br/><br/>Ben<br/><br/>http://benjamin67.wordpress.com/ I know exactly what you are going through. My son struggles with VACTERL as well. After spending most of the summer in the hospital because of a botched spinal cord detethering, we decided it was important to have a team of doctors instead of individual specialist.

Thankfully, our Urologist belonged to a practice that specializes in Spina Bifida. They have a Spina Bifida Clinic several times a year.

While VACTERL is not Spina Bifida, there are many striking similarities. Now instead of spending our lives schlepping our son from specialist to specialist, he goes to a clinic twice a year and sees all the specialist within a 4 hour timeframe (8 if we have tests beforehand). AND THE SPECIALIST TALK TO EACH OTHER!!!

It is by no means a perfect solution, but it did make our life more bearable.

Ben

http://benjamin67.wordpress.com/

]]> By: theshyone http://family.kentuckystudio.com/2007/10/24/will-the-real-vacterl-doctor-please-stand-up/comment-page-1/#comment-311 theshyone Fri, 26 Oct 2007 20:12:00 +0000 http://kentuckystudio.com/family2/2007/10/24/will-the-real-vacterl-doctor-please-stand-up/#comment-311 I am sad to say that for any injury there is no one but the patient themselves, or the parent in your case, that is the facilitoar of all. The bouncing is endless and the lack of communication between specialists abysmal. <br/><br/>HUGS I am sad to say that for any injury there is no one but the patient themselves, or the parent in your case, that is the facilitoar of all. The bouncing is endless and the lack of communication between specialists abysmal.

HUGS

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