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Genetic testing on kids

christytaylor
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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 Genetic Testing for the VHL. I was just wondering, like I said how they test the children for this disease. Please if someone could write back an answer that would ease my mind some. Any comments or etc. will be appreciated a lot.
More Then anything, for those of us who have this VHL disease, let's just continue to hope and pray that not just my three kids, but anyone out in the world today, with kids, that they just be free and blessed of not having this disease!!
Please just pray for my family at this time!!!!
Thanks,
Christy Taylor

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6 replies

tracey

hi christy,i pray that your kids do not have this terrible condition.my son has it and we have 2 have his 3 kids tested in march next year so i know how scarred you must be feeling right now.i do not have the condition myself but i may as well have because i live each day with pain having to watch my son go through it all.and believe me hes been through a tough time lately.hes blind now which doesnt help matters for him.hope gods on your side when you have those little ones tested,will keep you in my prayers kind regards tracey.

christytaylor

Tracy,
Thanks a lot for your comments. I took them this morning at 10:00am, to the chldrens hospital in Chapel Hill, for their test to be done there. The genetic doctor told m, with the holidays here, I should look to hear from them bye telephone in about 4 weeks, if it wasn't with the holidays, it would only take about 2 weeks or so. Does you husband have this disease, is this how your son has it? Take care Tracy and please more than anything, keep my family in your prayer.
Thanks,
Christy Taylor

marie3

Hi Christy,

I was diagnosed through NIH. They drew my blood and sent it to The Children's Hospital in Philadelphia. Once I was diagnosed positive for the VHL mutation I had my son tested. His pediatrician drew his blood, packaged it properly, and sent it to The Children's Hospital in Philadelphia (he tested positive for VHL). We contacted the same, exact doctor (in Philly) who processed my blood and she told us exactly, step by step, what to do and how to ship my son's blood. My sister also had her blood drawn here in Chicago, and had it shipped to Philadelphia (she tested negative). Test results took approximately 8-10 weeks. It felt like 8-10 years. I felt like my life was in Limbo.

Even though my son (now 6 years old) has VHL, life is normal. He is asymptomatic---for now. And I say "for now" not to be negative, but realistic. I keep myself educated on VHL. I ask many, many, many questions. Sometimes the same question over and over just to see if the answer has changed. If problems arise, we will deal with them. This is a great group here. They helped me alot.

I will keep your family in my thoughts. Hope all turns out well. Be strong!

Sincerely,
Marie

grovermax

Christy,
Hang in there. My husband has VHL that comes from his maternal grandfather if not previous generations. He was genetically tested about 8 years ago and tested positive. I tested all three of my daughters from their umbilical cord blood at birth. Two have the genetic mutation, but are asymptomatic. In fact my experience on the testing is very similar to Marie's.

Thought it's tough sometimes, I find it's better to cope by being informed and proactive with screening and annual monitoring (routine blood/urine tests). Organizations like this one where you learn you are not alone also help a great deal.

Marie,
I totally agree and identify with asking questions to make sure the answer is the same! I also make sure that any doctors (outside of NIH) that my husband and kids deal with are at least familiar with VHL and care enough to know more about it.

Best to the both of your familes,
Cheryl
This way The more

christytaylor

Marie,
Thank you so much for your comment on the genetic testing for my three kids. I have prepared myself the best way that I possible can, with the 14 years of dealing with VHL that I have personally. I pray that neither one of them will have this disease but it's all up to the Good Lord and what he wants, that really all I can do is just Pray and trust in him to protect and look after all of us with the VHL disease and any kids or children who my be at risk of having it.
Thanks again,
Christy Taylor

christytaylor

Cheryl,
That for your comments on the VHL testing, I took my kids this past Friday, My husband and I took them to Chapel Hill, to the childrens hospital and they did they testing there. They told me due to the time of the year and the Christams holiday that I should expect to hear from them sometime in January, first of Febuary. I've been praying so now all I can do is trust in God that theses three kids will not have this terrible disease.
Thanks again,
Christy Taylor

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