Comments on: The Diagnosis http://www.5minutesforspecialneeds.com/949/the-diagnosis/ Support. Insight. Inspiration Thu, 11 Mar 2010 22:27:22 -0500 hourly 1 By: Barbara http://www.5minutesforspecialneeds.com/949/the-diagnosis/#comment-54485 Barbara Sun, 08 Feb 2009 02:29:39 +0000 http://www.5minutesforspecialneeds.com/?p=949#comment-54485 My thanks, too, for sharing your story - so well. I encourage others to go to your blog, too, to see the photo of your lovely daughter. While many can relate to your experience with Dr-Poor-Communicator, many can take hope in the treatment options that are not only life-saving but life-enhancing. My thanks, too, for sharing your story – so well. I encourage others to go to your blog, too, to see the photo of your lovely daughter. While many can relate to your experience with Dr-Poor-Communicator, many can take hope in the treatment options that are not only life-saving but life-enhancing.

]]> By: Heidi @ GGIP http://www.5minutesforspecialneeds.com/949/the-diagnosis/#comment-54109 Heidi @ GGIP Sat, 07 Feb 2009 13:44:05 +0000 http://www.5minutesforspecialneeds.com/?p=949#comment-54109 Wow. You have written this so well that I can almost feel how you felt when you first heard of neurofibromatosis. That is just exactly how it goes. The doctor says something and it isn't even like english at first, but then soon you know much more than you ever wanted to know about the condition. Wow. You have written this so well that I can almost feel how you felt when you first heard of neurofibromatosis. That is just exactly how it goes. The doctor says something and it isn't even like english at first, but then soon you know much more than you ever wanted to know about the condition.

]]> By: starrlife http://www.5minutesforspecialneeds.com/949/the-diagnosis/#comment-54102 starrlife Sat, 07 Feb 2009 13:39:36 +0000 http://www.5minutesforspecialneeds.com/?p=949#comment-54102 What a tragic story and well written- wrung my heart out. I can see Mom sitting in the car holding her child,:( That Dr was just so incredibly sensitive (sarcasm). What a tragic story and well written- wrung my heart out. I can see Mom sitting in the car holding her child,:( That Dr was just so incredibly sensitive (sarcasm).

]]> By: Babyamore (Trish) http://www.5minutesforspecialneeds.com/949/the-diagnosis/#comment-53794 Babyamore (Trish) Sat, 07 Feb 2009 05:13:12 +0000 http://www.5minutesforspecialneeds.com/?p=949#comment-53794 Wow - I am interested (sadly) to hear others NF stories. I have NF1 too so does my son (2), I only connected the 'dots' when I was about 23 after my then 2 yr old cousin had an optic glioma removed.She is now 23 and is fine. I saw a newsletter on their table. My grandfather had it, two of my uncles , my aunt and mother. Through out numerous medical treatments no one Dr had connected the dots that we all had NF1. My sister has it too. I Australia they do not routinely scan for any tumours - they wait till there is a need to ? Wow – I am interested (sadly) to hear others NF stories.

I have NF1 too so does my son (2), I only connected the 'dots' when I was about 23 after my then 2 yr old cousin had an optic glioma removed.She is now 23 and is fine.

I saw a newsletter on their table.

My grandfather had it, two of my uncles , my aunt and mother.

Through out numerous medical treatments no one Dr had connected the dots that we all had NF1.

My sister has it too.
I Australia they do not routinely scan for any tumours – they wait till there is a need to ?

]]> By: Lisa http://www.5minutesforspecialneeds.com/949/the-diagnosis/#comment-53750 Lisa Sat, 07 Feb 2009 04:07:19 +0000 http://www.5minutesforspecialneeds.com/?p=949#comment-53750 I know what you feel so well. 2 of my older boys have Nerofibromatosis (NF) my oldest son has had 2 spinal surgeries due to NF on his spine . I have it, my sister has it really bad. She was unlucky for some of her tumors to turn in cancer, by the grace of God it was found and she is doing well. My family runs marathons for a group that raises money for research for NF. This site is a WEALTH of information on NF. Take the time to check it out you will be glad you did. Childrens Tumor foundation. WWW.ctf.org I know what you feel so well. 2 of my older boys have Nerofibromatosis (NF) my oldest son has had 2 spinal surgeries due to NF on his spine . I have it, my sister has it really bad. She was unlucky for some of her tumors to turn in cancer, by the grace of God it was found and she is doing well.

My family runs marathons for a group that raises money for research for NF. This site is a WEALTH of information on NF. Take the time to check it out you will be glad you did.
Childrens Tumor foundation.
http://WWW.ctf.org

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