Advice for mums with children that ha... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

945 members235 posts

Advice for mums with children that have ADPKD

Mummaof2pkdkids
Mummaof2pkdkids

Hi All,

I’ve been a member here for a year, and not written anything, Not sure why I just did want to accept it I guess. I would like to know if there are any mums out there in this community that have kids with PKD?

I have 4 children and 2 of my girls my youngest children have ADPKD At the time of writing this they are both 7 (not twins! Story for another day!) We found out when my oldest of them 5 at the time was rush into hospital for suspected apedix rupture, to find out she has numerous cysts in both kidneys one of which is 4cm and her little kidneys are only 9cm themselves. It scares me how many cysts they have in both kidneys, each time they go for a scan my anxiety hits the roof! What if there’s more scaring or cysts? How many more can fit in a 9cm kidney? For now their kidney function is fine and their blood pressure is at a good level.

It’s my husbands side that has it and after asking about in the family it’s been a problem for years but no one thought to tell him. He has cysts on his liver too, which the girls specialist has said they will need to be tested for before going on any contraception when they are like 90 and thinking about sex that is! It’s been a long road, the girls have had to make big changes in their life due to this disease: no contact spots at school etc.

I would love to have Someone in the same boat!

8 Replies
oldestnewest

Hi welcome.

I haven't had my kids tested. I was a similar age to your girls when I was diagnosed. As an 8 year old my kidneys were already covered in cysts. But the good news is that it had very little impact on my life. The biggest thing was to make sure I was drinking lots of fluids. I was told that pregnancy might be difficult but I had two healthy pregnancies.

I attended clinic at the hospital once a year (more during pregnancy) and that was about all until I was about 40. Then my function began to drop but it's a slow progressing disease in most people.

Try not to worry too much, it may never become more than an inconvenience for them, some people never have any other symptoms.

Take care

Hi,

I am the mum of a 16 year old who has ADPKD. He was diagnosed two years ago when he had appendicitis. My son also has a lot of cysts in both kidneys and his renal function is fine. We had genetic testing done and his ADPKD is the result of a mutation, so he is the only one in the family who has it.

I am sorry you are stressed and I think it is only normal to feel like that.

My son is British (although we live outside the UK) and we were initially distraught about the diagnosis as there are not paediatric specialist on this disease where we live. The PKD charity was absolutely fabulous giving us support and guidance and we now have an excellent doctor who we contact about this when we have questions.

We are overall optimistic and the condition does not figure prominently on our daily life. As Andek has said, it is a slow progressing disease. Also, there is lots of research going on so we don't know what might happen in 15 or 20 years.

Things that we have changed: We keep a monthly record of my son's blood pressure, do not use salt to cook at all at home and eat very little processed foods, eat red meat only once a week, avoid dark soda drinks and try to make sure that my son drinks lots of water.

My son is a super happy teenager (not very common, I know!) who is living his life normally, has lots of friends and is aware of the ADPKD, but not overly bothered by it. He knows there will be a time when he will have to deal with it, but that is not dominating his present life.

You are not alone, but it is hard to find information targeted at parents of young children.

Many of us find that joining a support group helps. Then you can chat to other people in the same situation, and keep conversations going more easily than here.

The Charity's own group on Facebook is usually rated as excellent.

facebook.com/groups/Parents...

Hi,

I am also belongs to the same group, we have no choice than live with it, my mother died of AKPKD and I am the younger son who is diagnosed of AKPKD & was at the age of 32,I am now 49. During those days medicine facilities were not much & no one used to undergo sonography. I have three sons 19,17 & 12 so far the middle son has cysts on both the kidneys. The son has to bear the pain throughout his life because of the wrong gene.

Presently he has got a medical seat & I advised him to study but nothing much is passed on to him to disturb his career & life.

I understand your pain & what circumstances you are going through. I had the same feel when I was knew about it but years passed & now life is going on.

I have 5 kids and only one so far has been diagnosed with PKD, she is stage 1 but she is scary high blood pressure.

Very sorry to hear but Don't worry... We need to live with it. My 2nd son has same as said earlier with both kidneys cyst at the age of 15 but I never told him yet .. he is now 18 yrs.

I only advise him to drink more water but nowadays kids don't drink too much water they prefer soft drinks instead.

Two of my three children were born with PKD. I’d sadly watched my father die of PKD, so when my unborn baby was diagnosed at the 20 week scan I was grief stricken. I went through the same feelings of fear and anxiety 24/7, even after she was born. I think I missed out on some of the joy of having a first new born baby because I was so frightened. We were having to travel to Great Ormond Street once a week which was an overwhelming experience for us. My daughter was on BP medication from two weeks. Other than cystic kidneys, high BP and a distended tummy, she was a healthy and happy baby. Parental care was nil at GOS and it was only when we moved to Wales after 7 months that the consultant could see my anxiety and distress, she reassured me that my daughter was not dying, her kidney function was fine and she was likely to live for many many years before she may need treatment. That was what I needed to hear and the fear left, and my daughter thrived. Two years later my son was born. Again he’d been diagnosed with PKD at the 20 week scan. He was in a bad way when he was born and was not expected to live, his kidneys were so huge and cystic they’d pushed up into his diaphragm leaving no room for his lungs to develop. That’s a story and a half, and perhaps for another time, but to cut a long story short he survived. My third child was born with healthy kidneys. My two PKD children are now 16 and 14. They have had normal, healthy lives. My daughter is slim and beautiful and unless anyone actually knew about her PKD nobody would ever guess. Her kidney function continues to do well. My son, despite his desperate beginnings has thrived and lives a healthy and vibrant life. He is much smaller than his peers, he tires a little quicker than others perhaps, but his kidney function continues to do well. Their main nephrologist who has seen them since babies is so pleased with them and sees them only once a year. They get all the other usual tests in local clinic once every three months.

What I want to say to you is it’s natural to be frightened. I was initially so scared pretty much all the time, I thought everything was an indicator that she was in renal failure. I hunted the internet, read books trying to find something that would help and save my baby. It’s a natural reaction. But here’s my advice, try to recognise this is an incredibly slow burner. Out of all the genetic diseases, I’d say this is one of the better ones. Quality of life is still good, the long term out look is relatively good because there are options. Work with your consultant, and don’t be afraid to ask questions. They have graphs plotting kidney function and can show how things are progressing. Face it, that’s the best way of dealing with it.

As far as your girls are concerned, you don’t need to wrap them up in cotton wool, but I’d encourage them to drink a ton of water. I stopped having squash, fizzy pop etc in the house. So mine drink only water. They complained about it initially, but don’t even think about it now. They have bottles that they fill and swig from. Water is essential for slowing down cyst growth - in fact it’s very similar to how Tolvaptan works. We have become vegan (wholefood plant based), I limit the amount of refined sugars, we have no Caffeine or alcohol. My kids don’t always follow it and I’m not anal about it because I know that the food I serve them is healthy and good for kidneys. Be proactive, educate yourself and you’ll stop being frightened and anxious.

But be patient with yourself. We all worry sometimes, it’s only natural. You’re not alone, there’s plenty of us going through the same or similar things, so don’t hesitate to ask us any questions or if you just need reassurance. Best of luck x

Hi All,

Thank you all so much for taking the time to reply to me! Just knowing I’m not alone is a amazing feeling! I have mum friends and when we are out they will get fizzy drinks or mc Donald’s for Their children and mine are there with water or a veggie happy meal with a fruit bag.

With it being so pro dominant in my husband’s family I guess I was kind of hoping for someone else to talk too, but it all seems hush hush like all the family members are defective for having it! Which I think has made my way thinking about it worse.

They are under the evelina children’s hospital in London, they are a good hospital, but having support from other mums in the same boat is better if that makes sense.

My older 2 children are just amazing I can’t believe how much they on the ball with it, my eldest girl is 12 and if she notices something like they go to toilet more times than usual she’s on to me about it! Or my son flushes them with water Throughout the day.

My husband has just got over a kidney infection where he was peeing blood for 4 days, which is quite scary but his consultant has said it will happen more and more now he’s over 35 which if I’m honest is ridiculous advice!

I’ve been thinking about making a change to vegetarian or vegan, I hear the benefits of it are wonderful.

I have taken all you have said into account thank you 🙏 x

You may also like...