Advice for Children Going into Kideny Failure

[reg28enia]

We have been told that this will be the year that my 10 year old will go into kidney failure. He has a disease called nephrotic syndrome, that he has had since he was 3. Normally children do not lose their kidney function from this disease, but he did not respond to the steroid meds. He has been on the meds used to keep people from rejecting their transplants and they will work for a while then stop. He leaks protein and that has damaged hid kidney's over the years. We are in the hospital often to remove the extra fluid buildup by IV med and albumin. He is on a major fluid restriction and no added salt diet. My question is Does any one have advice I need to know before Dialysis? The Dr's only tell you want they think you need to know. What do I need to know?

[Sara]

I wish I could offer some personal experience (my husband is the one on dialysis) but I think a good step is to read all the threads on this board.  There is a huge wealth of information here.

[Fox_nc]

I agree that you should do as much research as you can, and by all means, ask your doctors every question you can think of.  The only thing with dialysis is that it's a different experience for every patient.  Attend what sessions they will allow you and pay attention to everything.  Take notes!  Learn the language.  This site is a great place to do just that.  Ok - that's from the adult who started hemo again last week.  Now from a former child patient of kidney failure, hemo, PD and a transplant - as a parent, be there for your child.  Be his advocate.  You know your child best and as he starts any new treatment you will be the best temperature gage for what is going on.  Even if you are lucky and have a wonderful pediatric staff, there will always be some who thinks they know your child better than you do.  They may even try and tell you how he feels.  Just know that he is your child any you will always know him better.  On a smaller note - don't make a big deal about the diet restrictions.  Try not to point it out too much outside the family (it can be embarrassing to not be like others)  Oh and above all else - don't lose your sense of humor  . . . remember no matter what else happens, medically, he's still a 10 year old boy :-)  I'm sure that answers nothing, but hope it helps.

[angieskidney]

Nephrotic syndrome is different than what I experienced but I will say my part as I was sick since birth and they finally discovered what was wrong when I was 9. For me I was lethargic for the first 16 years old my life. I don't know if your son is lethargic but I remember I felt like I was an outcast and then when I got my transplant at the age of 16 I felt like my family didn't accept me still. The thing was they were used to me being sick and sticking to them like glue. I finally had energy and just wanted to be a normal kid. I went out and made friends and my mom kicked me out because she wasn't used to this new energetic self.

As for starting dialysis, I would say PD is best but I hated how repetitive it is. I say PD is better because since it is done more often the diet isn't as restrictive. And being a kid, kids don't like to have to restrict their diet. They want to fit in.

Kids are very adaptable and he will adjust with what ever is thrown his way. Just make sure you always make him feel like there is nothing wrong with him. That he is not less of a person because of his illness. These are things I wish my parents had known. Also don't just tell him to take his meds but explain the repercussions for not taking them. Let him know that HE is in CONTROL of his OWN care.

[Rerun]

Yes PD for a child is best.  Just make sure he takes control of his illness.  He will need to.  I also suggest some time before jumping into a transplant.  I know you want to save him from the struggles of dialysis, but just like anything you won't appreciate it unless you work for it. I know this must be hard for a parent, but remember it is not your fault.  Things just happen.

[Fox_nc]

I agree Angie - I mainly did PD overnight and liked that I wasn't as restricted as the hemo kids I knew.  Plus since it was at home, in my room, I didn't have to share.  When I was on hemo for a short time, I had to be at the hospital 3 times a week and work everything (including my mom's work schedule) around it.  But with the PD, I was able to "act" more like I was normal.  My family was real good about making me feel normal, it was the rest of the world that looked at me a little funny  

One other thing I would recommend Reg28enia, is if you can, get him involved in some outside the hospital activity with other renal kids.  I was able to attend camp when I was 15 and on PD and it really helped seeing other kids, like me, outside the hospital.

[livecam]

I only have one tiny bit to add.  Kids get transplants much quicker than adults in the U.S.  That is because they are prioritized by age.  Please get him listed as soon as possible so dialysis can be kept to a minimum.  Good luck!

[stauffenberg]

You don't mention how your child has fared developmentally so far with the nephrotic syndrome.  But since being on dialysis can permanently stunt the growth and intellectual development of a child, make sure he gets a transplant as quickly as possible.  The wait should not be as long as it is for adults, because the medical system recognizes the urgency of children getting a transplant soon.

[AlasdairUK]

When I went on to PD I was able to go to school and remain a fairly active life. It also helps a kid grow better than if he was on HD as you are removing toxins more often. Fluid restriction are often less restrictive. 

Full knowledge of what is happening should be given at all times as this helps understand why you take certain drugs and what might happen if you don't. As a 15 year old for me I was not to worried about things that could happen when I was 50 as this seems such a long way off to a young person. He needs to be aware that kidney failure is a disease that he will have to manage for the rest of his life. 

I agree with postings before, just be there for your son and be supportive. He is 10 years and must still be treated as such.

Alasdair.

[angieskidney]

I only have one tiny bit to add.  Kids get transplants much quicker than adults in the U.S.  That is because they are prioritized by age.  Please get him listed as soon as possible so dialysis can be kept to a minimum.  Good luck!

Hmmm.. I wonder if that is true in Canada as well because I got my first transplant at the age of 16 in a children's hospital in only 2 months time of me being on CAPD.

You don't mention how your child has fared developmentally so far with the nephrotic syndrome. But since being on dialysis can permanently stunt the growth and intellectual development of a child, make sure he gets a transplant as quickly as possible. The wait should not be as long as it is for adults, because the medical system recognizes the urgency of children getting a transplant soon.

About damned time!! In the 70's and 80's they didn't yet recognize that but I sure as damn well experienced that!! I am tired of having to explain to people how I didn't start living "outside of the bubble" until after the first 16 years of my life and because of it I am not as socially adept. It is not so bad now ... as I finally have adapted but damn! At first I had the hardest time! People scared me! I just could NOT fit in no matter how hard I tried 

When I went on to PD I was able to go to school and remain a fairly active life. It also helps a kid grow better than if he was on HD as you are removing toxins more often. Fluid restriction are often less restrictive.

Lucky! My principal made me go home and refused to let me do my PD at the school. She had given me an old locker room with a broken vent on the door and at that time dialysis had more risk and had to be done in a very steril environment. All she said was, "take it or leave it" as if we didn't HAVE to be that picky. "Gee okay Miss Oulette! Peritonitis is fun so don't worry!" 

Full knowledge of what is happening should be given at all times as this helps understand why you take certain drugs and what might happen if you don't. As a 15 year old for me I was not to worried about things that could happen when I was 50 as this seems such a long way off to a young person. He needs to be aware that kidney failure is a disease that he will have to manage for the rest of his life.

Yes, I didn't realize all the side effects I would go through and because of that I did not accept them but instead I refused to take them! Who wants to be a fat 16 year old girl? I know for boys it is not so bad .. the facial hair might even make him popular