I am sorry to hear your daughter has PKD.

I don't think anyone can predict how her disease will progress. And it is still possible that her abdominal pain and headaches are due to stress. That of course isn't a great comfort because you don't want your child to deal with those things. But the cysts may not be causing any problems as of yet. I had tons of cysts when I was diagnosed at 19 and didn't have any PKD complications til after I turned 40. I doubt the headaches are PKD related. The only time I have heard of PKD related headaches is when they are the "worst in the world" sort that signal a brain aneurysm.

It can be tough to sort out what is caused by PKD and what is not. And if your child is not feeling well I understand wanting to get to the bottom of it. But I would be careful not to attach the blame to PKD too quickly at this point. Is her blood pressure normal? Do you know what her function is? (creatinine) Are the cysts large and impeding on any other organs? If her function is normal and her cysts are small, then it is very likely that her pain isn't PKD related. What does the doctor think?

Not knowing is terribly hard. I would try very hard not to panic your daughter. If she is under stress this could make it worse. Although sometimes children take news better than adults! When I found out I had PKD it really didn't bother me at all. I knew it wouldn't affect me most likely til I was in my 40's or 50's and I felt that was ages away and I hardly thought about it.

Once again, I am very sorry you are going through this. I hope some of the other parents of kids with PKD are able to give you some solid advice. In the meantime, I am wishing for all the best for you and your daughter.

Hello,
Sometimes now I wonder if some of the health problems I had as a child and young person were related to the PKD. I wasn't diagnosed until I was 28. By that time I had many cysts and stones.
The diagnosis was made when the doctor was trying to find the cause of my severe back pain. The problem showed up on the X rays. So they did an IVP and ultrasound.
As a child I had recurrent pain in my left side which was never properly investigated. I sometimes had severe cramping pain in my abdomen. As a teenager I had recurrent severe headaches. I had X rays of my head but not of my body. No cause was found. I also became anaemic and had to take iron tablets. No cause for this was found.
Lately I have wondered if any of this was due to my kidney condition. Maybe I too had cysts from an early age, possibly stones too. I will probably never know.
I have a son who is 22. He has not been investigated and doesn't want to be at the moment. Like me he too has other health problems - a tendency towards joint pains and arthritis (which my father and mother both had). He had to give up ice-skating when he was about 10 or 12 because of the pain in his feet and ankles. He has sometimes been in severe pain just with walking and standing. He has also suffered from depression since he was about 14. (I was diagnosed with bi-polar disorder in 2003 and my father was diagnosed with this condition too. My son's father was diagnosed with epilepsy just after we were married. He was also diagnosed with schizophrenia after our marriage fell apart when my son was a baby. My husband's father is also schizophrenic.) This became severe when he was 15 to 17 and he is still battling with it.
On top of this he is on his own with me, having to put up with me being ill for much of his life and having no support whatsoever from his father.
Lately I have hated the degree of stress that he was being put under by seeing me so ill and knowing that he himself could develop this condition some day or may indeed already have it. The whole thing had me feeling terribly depressed.
So I can understand how you can feel bad at, as it were, inflicting an illness on your child. I felt horrendous. First of all I had the PKD and arthritis, later followed by the bi-polar disorder AND I had married someone who turned out to have epilepsy and schizophrenia. All of these are quite devastating illnesses in their different ways and a tendency towards some of them has already been seen to have been passed down to my son. He also had a possible episode of epilepsy when he was 9. However, in the end there is nothing I can do to change this situation.
So I think the best thing is to love your child and support them as much as you can. None of us knows what lies ahead. Even people without hereditary illnesses may not fare well. My elder brother, who never seemed to have any health problems, was diagnosed with a massive brain tumour and spent over a year in hospital and then about 10 years in a wheelchair until he finally deteriorated and died last year. His wife had already been diagnosed with hodgkins disease and, after a long hard struggle, she had already died some years before my brother. Their son was just 12 when both his parents were in hospital critically ill. Now he is left without his parents. So he has already had a major amount to deal with. So, even without genetically inherited illness there are all sorts of illnesses and trauma, physical and emotional, that can happen to a person in this life.
Sorry for rambling on at such length but I am just trying to say that you must not blame yourself for your child's condition. Also your child may orow up to lead a long and happy life without any particular problems from this condition. So do remember that. It is important to keep things in perspective and not let the illness dominate your mind. It may eventually cause devastation but there is no need to let it do this now.
I hope that something that I have said here is helpful to somebody and I also hope it does not cause any offense to anyone. These are just some of my thoughts on the matter.
Today is ours for living.
Best wishes to everyone and thank you again to all of you who have encouraged me in the past year since I joined this group, You have all helped me so much. Thank you.
Patricia.

ok TK, take a deep breath and relax. remember, you had PKD when you were 10 and you are still around and still functioning. most of all don't deprive your daughter of the fun of growing up because you have unfounded fears of what might happen. she is a normal child and has to be treated as one, unless medical conditions are so severe that it is impossible.
as with any child, she should follow a healthy diet with plenty of water. PKD is not required for that. her diet should be low in salt, but so should most children.
there is real hope that Tolvaptan or another medication to be developed in the future will slow or stop the growth of cysts. there may be no reason at all for your daughter to ever progress to kidney failure.
now, take another deep breath and give your daughter the biggest hug you can. as for telling her, you can mention that she has the same condition you have and that she has to protect her kidneys, no bungee jumping, plenty of water and easy on salt. also mention that there is lots of hope in the future that she may never have any problems with it. do this in a light, easy way that won't frighten her.
keep us informed of her progress.

My daughter was diagnosed at age 7 and started medication for high blood pressure at age 9. She also used to suffer from headaches which were caused by the high blood pressure.

She is 14 now and her kidney function is still very good, almost perfect in fact. I think that most kids tend to complain of stomach aches when they are younger. I know both of my kids did and neither of them complains of kidney pain now.

My son is 21, he was diagnosed at 3 and has just started taking high blood pressure meds now. His kidney function is also still good. I myself was diagnosed at age 11 and have only started to lose significant function the last 2 years beginning at age 39.

Easy Unfortunately, your daughter has PKD, but unless there is something I dont know, there is absolutely no reason to think she will progress any faster, actually, she may progress very slowly, no one knows.
At such a young age, chances are her pain is not coming from PKD (IMO), but of course, check with your doctors.
Dont fall into your minds trap, Ive been there. Make no comparison between the size and amounts of cysts found in your daughter with any case that you read here in the DS, because not 2 cases are alike. Do not compare, AND DO NOT EXTRAPOLATE, Ive been there, it could drive you nuts, and you will get nowhere with the numbers and results.
Make sure you do the proper care for her, teach her what is good and bad for her, drink her water, etc.
My prognosis for your 10 year old girl?
1. She will be fine for a long time, remember PKD is usually a slow progression (condition, as I have chosen to call it). And for many people, it doesnt affect them at all. So she may even be fine forever.
2. With the medical advances being studied, she will most probably benefit from some type of medicine that will help her.
Mathematically speaking, the odds are way in her favor.
Keep the faith, and enjoy your daughter.
PKDAD