Newly diagnosed teenager

[Pip766]

Hi, I’m new here and am desperate for advice as so far Ive found no one to help me. My son has just turned 17 and we have just discovered that he was born with a small kidney and a large cyst on the other one. And has CKD stage 2 and high blood pressure. Doctors have told him to have a low salt and low protein diet. However although I am careful what I cook him at home now he’s still eating lots of salty food when out. If I remind him he becomes aggressive and says when he leaves home he’s not going to watch his diet or worry about his blood pressure tablet. Due to his age I don’t know how to get help, to help him accept his diagnoses and look after himself . It’s really worrying me as he may go to university next year. I would be really great full of any advice.

[LindsayLou]

Good morning. very similar to your story; the difference is my son is 14 and we are father in at kidney failure. we had no signs or symptoms till it was this far his blood pressure is being controlled by medication and he is on dialysis. if your son is not this far make him aware that this is where it will head. the sad thing is you can only educate to a certain degree with him heing almost 18. I would ask his doctors and care team to be forthcoming with what his treatment plan is and why

[Mimi310 in reply to LindsayLou]

Hi. How is your son going today ?

[Asrothia]

My son was also just diagnosed at age 17 with stage 4. He has cysts, enlarged kidneys, dual collection system, and possibly C3G. We didn't know until he had a nose bleed at school and the nurse took his blood pressure and it was through the roof. He spent 3 weeks in the NICU. The doctors told us that the worst time was the teenage years because they tend to not take their meds regularly. These are the years where our kids are gaining more autonomy and more control of their lives. A serious diagnosis takes that autonomy and control away. I can understand why your son is defiant. I agree with LindsayLou and speak with his care team. Is there a way he can have more control in his treatment?

[Lifealysis]

Here is my advice if I was dealing with this.

"Tough Love" This is a typical thought process of a teenager, (how would I know? Because I was there and I started Dialysis when I was 17) We feel invincible at this age, we also want more than anything to just feel normal, like our friends! That means he's going to want to eat and do things his friends are doing! Including high sodium foods and not taking blood pressure pills! These are very important to save what kidney function he has left! This is exactly why the Doctor did this!

Though I didn't get the warning your son is getting! I would of ended up on Dialysis anyway.

Take him to a Dialysis center inside a Hospital setting so he can see what patients have to go through. (you should speak with a Doctor to set this up, they should have no problem helping you with this) Why a Hospital setting? Because you want to set the tone for the worst possible scenario. You want to show him what could be his future, and how to help possibly prevent it! You need to strike a little fear inside him, so he knows what type of life he may be facing! But he also has the option to stay clear from this type of life as long as possible, if he just manages his health and understand the whole situation! Understanding is the big word here, it's very difficult to get young people to understand what's in front of them sometimes.

Those are two very important areas to manage when dealing with Kidney failure. Blood Pressure and Sodium. You know that, the Doctors know that, now you just need to help him understand how important it is!

You also have to try and understand where he's coming from, but tell him like it is, "If you keep doing anything you want, this is going to happen, but if you do this, it's possible to prevent it from happening!".

Something else about teenagers, you have to be diligent. Almost to the point of nagging, but you don't want to nag, because then it will go in one ear and out the other. You want to help them understand. When they get a better understanding, and a positive reminder, it helps a great deal.