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Child with VHL

twebb0506
0 Recommendations

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 major anxiety and is very difficult for her to have any tests or treatments for VHL. Most of the tests she has she has to be sedated or put to sleep. Any other parents that have stories similar to mine I really would love to talk with you. This consumes me!!!

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Anxiety Pain

5 replies

lifeandhope

My girls are 3 and 5 so we are not where you are yet. However, we watched my father suffer and die from VHL nine months ago, and that has been hard on me as well as my older daughter. My girls are a little too young to understand the intricacies of VHL so they do not have anxiety issues yet, but I know they are coming. My Dad had and I have a lot of anxiety because of VHL. All of that to say, I don't know what you are going through, but you and your daughter are not alone in your VHL battle. Get support here at this site; it helps me to read others' experiences just to know I'm not alone or crazy for my anxious emotions. Perhaps remind your daughter that her experience is not destined to be the same as her father's; I have to tell myself that all the time because VHL really caused a lot of pain and suffering in my sweet Daddy. I have to remember I won't necessarily die like that. I'm so sorry for you and your daughter. Bless you guys.

joyceg98

My son had the same issue. His father died when he was six. When he was diagnosed, he and his best friend who had also known his Dad were petrified.

This is one of the things we address in the Kids' Handbook. Any of us who have watched an older relative with a nasty trip with VHL have images that are hard to erase.

As LifeAndHope mentions, try to remember that each person's experience is unique. Your daughter's experience will not necessarily follow her father's. And besides, times have changed. We know a lot more now about managing VHL.

Older relatives were often diagnosed late, or treated less well during the early years of their disease. If he had had the kinds of monitoring and treatment that are available today, it would likely have made a big difference for him too.

Please assure her that you are going to work hard with her to make sure that you find things early -- as you have -- and that you will find her the best possible treatment. Sometimes the best treatment is no treatment at all (as possibly with her kidneys). But now that you know there is something brewing there you will keep a close eye on it. It will be important for her to participate in regular testing so that you and your doctors can safeguard her, and choose the right moment to act when it becomes necessary.

And most of all, you need her to help keep her body strong, her immune system working at peak efficiency, so that her own self-repair mechanism is doing its best job for her. Hope, strength, and working together with you and this community are your best first-line of defense. Really.

All best wishes,
Joyce

sfit

I have a 7yo daughter with VHL. As a father who has been living with VHL for 25yrs. (since I was 10) I understand what it is like to be a child with VHL and have a child with VHL, it is scary to say the least. My wife continualy reminds me that I have to be a strong example for my daughter and to stay positive so she sees that as her example, not the scary side. I to beleive as Joyce does (se above comment) keeping your child healthy and active will play a tremeandous role in how well she lives with this diseas. Stay educated and seek out specialist in the feild, getting those tests done every 6 mo. so as to catch things before they get dangerous. My daughter has also presented with an eye lession which is not treatable due to location(optic nerve) we have found the lession to remain stable by restricting sugar intake and maintaining a healthy diet. There is no scientific data to support that as far as we know. We have found that through trial and error. You are doing a great thing by seeking out advice and talking about this remember to stay strong and positive as how we react as parents often translates to how our children react. My daughter and son both have eye appts. today as a matter of fact and we have turned it in to a fun and reward based experience which has helped tremendously. You can live with VHL so can your daughter.

Positive Thoughts,
Shain

twebb0506

Thank You so much for sharing your story with me. It does help to hear others stories and what others have done to overcome this. You are very kind and I am truly sorry for the loss of your Father. T

twebb0506

I thank you for your encouraging words and advise. I hope things go well for your childrens eye exams. If you don't mind sharing with me, I would like to know how their appts go. God Bless, T

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