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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.
Child with VHL
- By twebb0506 · New reply September 16, 2009
- 5 replies
- My 12 year old daughter has VHL and has had multiple laser surgeries to remove a tumor from her eye. She has also watched her Father suffer and pass away from VHL. Passed a year ago July 16th. She has ...
When to tell your children about VHL
- By ballroomdancer · New reply September 13, 2009
- 8 replies
- What approaches have other parents used when they felt it was the right time to tell their children about VHL disease? What age do you think is appropriate for a child to know about their parent's medical ...
ultrasound screening for children
- By marie3 · New reply August 12, 2009
- 9 replies
- Joyce, You mentioned in the discussion about Crohns disease that ultrasounds are not a good method for detecting tumors in the abdomen, yet in the VHL handbook it is recommended annually for ages 11-19 ...
PGD - Preimplantation Genetic Diagnosis
- By DebWestbrook · New reply May 14, 2009
- 12 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 ...
young children and vhl
- By kimbre · New reply April 26, 2009
- 13 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 ...
Treatment of optic nerve tumors
- By AEckerman · New reply April 9, 2009
- 27 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 ...
Children Illustrators Needed for VHL Kid's Book!
- By Melissa4 · Posted February 21, 2009
- 0 replies
- Hello Parents & Kids, My name is Melissa Kruger, the editor-in-chief of the VHL Handbook: Kid's Edition. I still need several illustrators for our handbook (kids with VHL ages 5 to 18). Please refer to ...
Revolution!!!
- By AlexAnderson · New reply December 21, 2008
- 7 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 ...
Spinal hemangioblastomas located along the nerve root
- 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 ...
VHL Children's Hanbook
- 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 ...
ovarian cyst
- 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
- 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 ...
Genetic testing on kids
- 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
- 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
- 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
- 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 ...
