Kids and teens

Young people with VHL have questions and concerns. Share your experiences dealing with your parents, your brothers and sisters, your friends, school, etc.

Spinal hemangioblastomas located along the nerve root

AEckerman
  • By AEckerman · New reply November 13, 2008
  • 9 replies
  • Recent mris show several hemangioblastomas located in the nerve roots of my 16 year old. I understand that this is a rare location for most VHL spinal tumors. I was told to have her rescanned in 6 -9 ...

Revolution!!!

AlexAnderson
  • By AlexAnderson · New reply October 8, 2008
  • 3 replies
  • Reply, Make me a friend, do whatever you can to let me know that you're in! And when you're in, Tell your friends!!! (Fundraising Ideas Needed ...

Lemonade stand

AlexAnderson
  • By AlexAnderson · New reply October 5, 2008
  • 1 reply
  • Hey, Cancerkid here. You know my lemonade stands that I told you about? Well I have another 9 in may!! My friends in school are sooooooooo great! Instead of one lemonade stand, I had so many volonteers ...

Treatment of optic nerve tumors

AEckerman
  • By AEckerman · New reply September 26, 2008
  • 23 replies
  • Once again, I am on a mission to find the latest information in dealing with optic nerve tumors. My 16 year old daughter, Chloe, has three eye tumors. One on the optic nerve, the other two in the other ...

VHL Children's Hanbook

cmdoyle
  • By cmdoyle · New reply August 23, 2008
  • 3 replies
  • Hello everyone. As you may have read in the current newsletter, VHLFA has been working for a while to create a VHL Children's Handbook. This handbook, similar to the VHL Adult Handbook already in print ...

Teens make a difference!!!

AlexAnderson
  • By AlexAnderson · Posted August 20, 2008
  • 0 replies
  • Hey, I'm the kid on the top right of THIS PAGE!!! That's me, And I say, kids make a difference too! I want to start a revolution, but I can't do it alone! Who's with me ...

ovarian cyst

chewbacca1965
  • By chewbacca1965 · New reply June 12, 2008
  • 16 replies
  • I am wondering, since it is hard to find info online. I have VHL and we all know that children have a 50/50 chance of getting it. my question is, is there a connection between VHL and ovarian cyst. Most ...

childhood screening protocol

davidw
  • By davidw · New reply May 7, 2008
  • 4 replies
  • Nine of my family have V H L my monther is the oldest and my daughter is the youngest. I appear to be finding that getting the appropriate screening for her is a constant up hill battle. She is ten years ...

young children and vhl

kimbre
  • By kimbre · New reply February 10, 2008
  • 5 replies
  • This is a 2 part question. I was just recently diagnosed with VHL and I am getting surgery for my kidney tumors next week. I have 3 boys- 5 years old, 3 years old and 20 months old. Have any of you had ...

PGD - Preimplantation Genetic Diagnosis

DebWestbrook
  • By DebWestbrook · New reply January 19, 2008
  • 8 replies
  • I have VHL and am the first person diagnosed in my family, although we do assume that my father had VHL as he died from Kidney Cancer at the age of 40. My husband and I were exploring having children ...

Genetic testing on kids

christytaylor
  • By christytaylor · New reply December 19, 2007
  • 6 replies
  • If there is anyone out there that would care to share with me, on how the different clinics, tset young children for the VHL? My three kids, have to be in Chapel Hill tomorrow, Dec. 14th, 2007, for their ...

Did you have migraines

leanne3
  • By leanne3 · New reply October 14, 2007
  • 2 replies
  • I have Pheo as do my daughter and my Sister, two neices and a nephew. My two neices and my nephew have developed von hipple . my yougest daugher just started having migraines periodically around six months ...

Award Offered to children with disabilities

joyceg98
  • By joyceg98 · Posted September 25, 2007
  • 0 replies
  • Yes I Can! Award Offered to Children with Disabilities Students with disabilities, ages 2 to 21, who have excelled in various areas are eligible for The Council of Exceptional Children�s Yes I Can! Award ...

Grandson age 13 high blood pressure

Hi_its_suellen
  • By Hi_its_suellen · New reply May 7, 2007
  • 8 replies
  • Hi, I come from a family who has VHL. My grandchildren all had DNA testing, my grandson has VHL and he had a CT scan a few months ago. Last week he had an accident requiring stitches...while in the ER ...

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