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Parenting issues
Having kids? Informing your kids? Helping manage your children's health? Parents share experiences and support one another here.
Tumor growth in young children
- By BriannaB · New reply October 23, 2009
- 8 replies
- My husband has VHL and has had 4 Brain operations to remove them. We are awaiting test results on our two children. Because of it DNA testing it takes way longer then your standard blood test, so were ...
What Mom Would/n't Have Done
- By beccaloo · Posted October 21, 2009
- 0 replies
- IDK if this is a parenting issue, per se, but it seemed to fit best... I was diagnosed in '01 and was able to pretty much follow the line of VHL through my family backward, from me to mom (and her brother ...
Pre Implantation Genetic Diagnosis for VHL
- By Vhl_pgd_girl · New reply September 22, 2009
- 11 replies
- Hi Has anyone else out there had PGD to prevent VHL passing on? I'm due to start in a few months and an old fear is rearing its ugly head as I have recently opened the flood gates to find other people ...
PGD or No PGD - Are you happy with your decision?
- By split2991 · New reply September 8, 2009
- 5 replies
- Hi, I'm married to a wonderful man with VHL and we are embarking upon our decision process for having children - the question is not if, but how. I have always thought I would have a child the natural ...
Genetics
- By pheox3 · New reply July 13, 2009
- 5 replies
- My brother met with a genetics specialist yesterday. She told him that if he didn't have the VHL gene, then his children would never have to worry about having it either, neither would their children ...
Group Discussion
- By ZeshanAhmad · New reply June 21, 2009
- 1 reply
- i want to talk for the group discussion any one willing to conversate ...
What Is It Like to Be a Parent w/VHL?
- By beccaloo · New reply March 5, 2009
- 3 replies
- I'm 33yrs old and I was diagnosed w/VHL in 2001. After several hospital stays and surgeries, I've been sort of on cruise control these last 6-7yrs, monitoring my cysts, tumors, kidneys, spine, etc. For ...
Having children, CVS test in early pregnancy
- By _RSH- · New reply March 3, 2009
- 5 replies
- Hi, I'm 33 years old and was diagnosed with VHL 20 years ago, as I was growing up I never intented to have children because I did not want to pass on the disease. But I am please to say I now have a very ...
i thought i was alone
- By kez02m · New reply February 26, 2009
- 6 replies
- i live in australia and i thought i was alone but after reading your blogs i have learnt alot and that i'am not alone. Until recently i was lead to believe that children dont have as many problems until ...
confused
- By batley · New reply November 10, 2008
- 12 replies
- ive read some things on here about people bein tested for vhl and it commin back no vhl but they do have it , im confused , i have vhl and my daughter my son come back with a no but do i really beleave ...
my son has VHL
- By carmel · New reply March 6, 2008
- 13 replies
- Hi there my 3 year old son was diognosed genetically when he was 1 1/2 and I feel as though my heart is breaking ever since then. My husband has VHL and is badly affected. I have a feeling of complete ...
Can anyone out there answer this?
- By alyssa06 · New reply February 28, 2008
- 5 replies
- Just a quick question. I have heard of some people describing that they have these distinct birth marks that are associated with VHL. I myself have two small birth marks that lack pigmentation. I was ...
Hatfields and the Mc Coys vhl family connection
- By pizza · New reply August 29, 2007
- 6 replies
- Interesting article I just read on Yahoo news under the health section. Discusses the connection of VHL with the famous Mc Coy family and explains about vhl. Click on Yahoo news and go to the health section ...
Children, MRIs and Sedation
- By marie3 · New reply March 4, 2007
- 7 replies
- My 5 year old is having lower GI issues. A specialist recommended he have an MRI of his abdomen and pelvis to rule out blockages and tumors. I called Radiology to get information. The Prescreening Nurse ...
