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my son has VHL

carmel
0 Recommendations

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 and utter helplessness and dont know what to do. I wish his doctor would just scan my son from head to toe then at least we would know one way or another. An when an how do we tell him. Our 5 year old daughter is clear and we have told her when daddy goes for scans it is because daddy has extra lumps and the doctors are making sure they are ok. I dont know what to do.

Sorry I am just having a bad mummy moan.

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Anxiety Surgery Pregnancy

13 replies

inapeoplehouse

Hey, Don't appologize... So many of us have been there.

When I recently received a positive DNA testing on all 3 of my small girls, I was (and still am in agony) I went to the Yahoo group for advice and got many, many helpful comments, I would really encourage you to go back to the yahoo group and check them out, there was alot of good advice there...
http://health.groups.yahoo.com/group/vhlfa/message/10433

Once I accepted the situation myself and was strong enough to handle it myself, I told my girls. I told them each independantly in a method that was understandable to them for their age.

With my middle, the 6 year old, we have always refered to the illness as "sick bugs", so to explain things to her, we asked her if she remembered having her blood taken for the test, she did. We explained that we did that because everybody had a "Sick bug house" in their heads... with mommies illness, the sick bugs come out of their house sometimes and take a trip to places they aren't supposed to... In healthy people, the sick bugs always stay inside their house... I told her the test we did, told us whether her sick bugs would stay in her house, or travbel like mommies. I then told her that her bugs are like mine but that is okay because now that we know, the doctors can watch them and make sure they don't do anything their not allowed to.

She took this really well and asked questions like, "What if all the sick bugs come out at once? Do you die?" I told her that will never happen with her because we are going to watch them really close. She asked why Grandma died of her sick bugs, and we explained that the doctors didn;t know she had them so they didnt watch them and they got into mischief...

The other night while putting her to bed, she asked why I can't have anymore babies. I explained that with my sick bugs, I don't want to pass them to my babies now that I know I have them, She asked why I had her then and I told her I didn't know I had them when I had her. She waited a moment and said "Well, I'm glad you did.... even if I do have the bugs" It was one of those heart breaking moments that made everything peaceful for a moment.

My oldest, at 11 was much more difficult.. She took it harder but was still very understanding... She cried and said she was scared to go through what I have and we told her that may or may not happen but that she has the advantage of earlier monitoring and future technology. She is also being very good about it.....

The baby is 18 months and as everyone said on the Yahoo group, she will just be raised with it. Knowing she has it will just be a thing as she goes through screening and such. We are very lucky as I have always kept the kids informed at every corner of my journey and we have always been very honest and most of all, very brave.... I want them to know that if they ever do have to go through it all, it's ok.... We live with VHL not die with it.

Anyways, I am not sure if that will help.... All the best.. I am only a year into my own diagnosis and 2 months into that of my children and it is an amazingly difficult thing to cope with.
All the best

carmel

I thank you from the bottom of my heart. Your words have helpt an have given me some great ideas on how to tell my son. Please know that my thoughts are with you and your daughters.

XXTNGF1990XX

i have one word to say to your explination you gave your daughters, BRAVO!!! that is a great way of putting it. i too have had to explain to my girls why they were getting tested for VHL and it sure didnt come out that easy and simple as yours did. A job well done.

inapeoplehouse

Thank you although, I am not sure it is a wonder explination!!! I had fears and still do of her developing this huge fear of "the bugs" afterall... how creep are bugs???

The one thing we did at her counsellors office is we had her draw the bugs, to better understand how she processed it.. Luckily, she made them silly looking so we could laugh about them... I think that would be part of it too... Drawing silly bugs to identify the source.

There are no perfect explinations... It is scarey no matter what. With my oldest we had to explain that even though it feels nasty and unfair... At least we don'tt have to give ourselves numerous shots a day like diabetic children, or wear a helmet and not participate in normal activities like someone born mentally challenged. Yes we have an illness but we are lucky to know we have it and be able to screen for it.... and then closed with the favorite, "Besides, you may never get sick like mommy" line.

*sigh*

marie3

I've been diagnosed only 2-3 years. My 5 year old has been diagnosed about 1 1/2 years. When my son was first diagnosed, I was having anxiety attacks all the time. Not a day passed that I didn't think of VHL. My Internist wanted to put me on anti-depressants. I refused. Good friends (yes "FRIENDS", even though I haven't met many of you) helped me work through my fears and anxiety. I was told that it takes a few years till you're able to deal with the fact that you, or loved ones, have VHL. And I believe it's true. It's like your coping mechanism gets turned on. Now, I don't have anxiety attacks very often. Once in a great, great while. We have VHL, we get screened, and we do what we have to do to stay healthy. I decided not to have any more children : for one, my son is my miracle child-- for two, I'm afraid that pregnancy will bring out more symptoms--and three, I'm afraid to pass on the VHL gene again. When my son has to go to the Geneticist and have some routine screenings he'll ask , " Why am I going to the doctor? Am I sick?" Or "Why do we have to pee in the bottle, and not daddy?" I tell him that he and mommy have to make extra sure that we're not sick. And for now that's all I can tell him. Some day I'll have to explain things in more detail but I think this is all he can understand for now. Parenting is never easy on any level. Life is never that easy, for anyone, with or without VHL.

tray64

hi marie,i am new on here,and just read what you wrote about having more children.i am having an argument with my son at the moment about having more children.i dont think he should but that upset him when i said that.his reply to me was so mum you think because i have vhl that i do not have a right to be here.what could i say too that.he does have a point he does have a right to be here.he said if his next child has vhl then there is treatment available.he has planned his next child which will be in another 3yrs or so yet.but he may change his mind who knows new treatment may be available by then.i have mixed emotions about it at the moment.he also said what if his 3 kids have vhl does it mean that they can not have there own children,so i see his point there aswell.this will leave his family finished wont it.im new to this vhl so i dont know if there is any help he will be offered with fertility,you see i have a friend who had 2 children born with a disability they sadly both died,but she got help with her 3rd baby from fertility experts and now has a perfectly healthy daughter now.so its a question i will be putting to the doctors.my son has lost his sight due to a brain tumor it was left too long befor the doctors would believe there was anything wrong with him,they said it was stress.but asyou can see it wasnt.he now has 3 tumors in his kidneys which will be treated once they grow.and he is being monitered by doctors,so he will now be safe thank god.we have been through some tough times believe me,but things have calmed down a bit now.it feels like having a breather for a change.you stay strong marie you will get through things just take it day by day.from tracey

joyceg98

The decision to have a child is a tremendously personal one, between your son and his wife.

Some years back I did a series of articles on the childbearing choices various people had made. We got a lot of positive feedback on it. People have to choose for themselves, but at least this gives them a glimpse of the variety of choices others have made.

http://www.vhl.org/newsletter/vhl1998/98aachld.htm

Be careful how much you "argue" with your son about it. You can say what you need to say, but you don't get a vote.

Best wishes,
Joyce

tiffash23

I am 25 years old and have been diagnosed with VHL when I was 20 years old. I never thought once that I wouldn't have children. I now have a healthy 13 month old son who is my inspiration to go on with everyday of my life. I love him more than I love anything else in the world. If you truly are thinking about not having children because of VHL please think twice. The technology today is unreal and by knowing that you have VHL you are able to take precautions. Children aren't for everyone but please don't feel like you can't have children because of VHL. YOU CAN!!!
I DID!!!

Tiffany Asher

melanie5

Thank you for your comment, your 11 yr old....I just found out my 13 yr old daughter is sick, she is missing the gene completely. We are going to the childrens hospital on Tuesday at which time she will be told. I am so scared and don't know what to do or what happens next, feel completely lost and out of control.

All the support I can get is so very much appreciated.
Thank you everyone for your discussions, comments and blogs, most helpful.

Another Mum in agony.

Bernadette_Bailey

Dear Mom of a diagnosed son,

My symptoms started when I was 5 and I had my first surgery that year though I am 49 & just learning what's wrong. Personally, I knew I was differnt somehow, and I felt like a wierdo for many years, and it affected my self esteem. If he becomes very ill then you may share that he may have extra health issues like some are bad at math, we all have our challenges, but do not make him feel like the odd man out, you know? Besides we all react to the disease differently and we do not know what progress may soon be made!! For sure!! So chin up and remember you and he are better off knowing than not knowing. Now you can find the right doctors. And what a wonderful website this is. When you are weak- come here, B.Bailey,RN

davidw

Hy there my name is Karen and i have V H L i was diagnosed when my daughter was one years old. She was tested at four for the condition and she alos has V H L. I know what you mean about your heart breaking and sometimes it still feels like it is. Myself and my husband has found the following helpful with our daughter as she has been growing up she is now ten. Tumours we call spots, cysts we call bubbles as that is what they look like in a scan. Blood pressure is the doctors seeing how fast your blood is flowing through your viens. V H L is special blood and that is how we explain the condition. My daughter can now relate a spot to the word tumour but is not scared by the word. We have always been truthful when a member of my family is going into hospital or if they become un-well. I have also took my daughter with me to see myself get my annual screening done and this helped emensly. She seen bloods being taking and we had a compition to see who could fill the urine bottles the least and they won a prize she also seen my jelly on the belly scan ultra sound. My daughter has not had much screening just her eyes and her blood pressure but she appears to be at ease with the process as she has been with me on many occasions. I hope this helps and wish you all the best.
Karen

diaryofageneticdefec

Hi

I've just recently become a mum, I've know that i've probably had VHL all my life, my dad has it and his mum had it. Next month i go to Great Olmond Street to have her tested for VHL and i pray she is free. But if she isn't then i plan you just be very matter of fact about it. i agree with the post that said VHL shouldn't stop you having children. I think knowing and not making a big deal out of it is a good method. CHildren are smart and they respond to honesty. The disease is too unpredictable to be able to say this will or won't happen but i intend to let Ayla know that what ever happens she will be looked after and she has hundreds of people who love her and will help out.
Medical science is advancing all the time, from my granny who died not even knowing she had a tumour in her head to Ayla my daughter getting a test that will tell us. By the time she is in her 20's (the most likely time for a tumour to be apparent and needing treatment) there will most likely be a nonevasisve method of getting rid of it.
i went into work yesterday (i'm on maternity leave) and my boss has been dealing with the death of his mother and then a pupil at our school. He said he admired me because he said that it awas because of my expereinces of VHL that i am the amazing person i am, and in part i agree with him. I was able to be some comfort to him.
VHL takes away a lot but being a person with it of effected by it makes you more of a person.
I've had and have a number of tumours and i am a very healthy proud mum.
Feeling very positive today.
i'll check back in on an off day.

ReneeMichelle

I also have a son with VHL. Noah is 10 years old. Because I have VHL, I had Noah, and his little brother Michael, tested when they were babies. One has VHL, and one doesn't. Noah has always known that he has VHL, like Mommy. Kids are very accepting. If you treat this information in a matter-of-fact way, they will too. I cope with my VHL, and manage it, and try to stay positive as much as possible. That said, I think it is also fine to be angry or sad about having VHL. My son has had four tumours (three surgeries) and each time was Gut-wrenching for our family and very hard on him. But we tell him, and ourselves, that we will get through this.

As for not having children because of the risk of passing on VHL ... Wow. My opinion is that no one but the husband and wife should even voice an opinion!! I have VHL, and I think my life is worthwhile. I am a bright, caring, productive person and I contribute to this world in a positive way. My son, Noah, is the most gentle, thoughtful, kind boy you could meet. He has tested as gifted, and he plays the piano and competes in Chess tournaments, bowls and swims. He is a joy and a gift to everyone who knows him. My younger son, Michael, is sensitive, creative and out-going, and bold and brave. He takes dancing and plays hockey, and has a zest for life that you can't miss. I will never regret having these children. They are wonderful people and they have a lot to offer. With VHL and without.

I had to comment, because I have had people question my decision to have children, and I am still hurt and stunned that anyone would dare. Also, I should say that I respect the decision of people who choose not to have children. I can certainly understand why they might make that choice. Because, if I didn't have VHL I would have MORE children. Like 5 or 6! Because I ADORE the two that I have. So in a way, I have made both choices. I chose to have children and then I chose not to have more (I should say "We" because of course my husband got a vote too!) for reasons that are complex. Both decisions were very personal. Ours and ours alone.

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