Seeking any info: Our son was recently diagnosed with kidney disease

[BlueGuitar123]

Hi,

I'm a parent who is looking for possible answers or similar situations out there. Our 16-year-old son was diagnosed with kidney disease in March 2024. We've been trying to find medication and treatment to help with it.

This all started in January 2024, when our son was complaining about back pain and feeling bloated. We really didn't have any symptoms before this. We discovered that his kidneys weren't working properly after a urine test that showed high levels of protein. The proteinuria sent us to our local children's hospital where we spent the next week getting tests, a biopsy, and treatment.

At first, the doctors thought it could be FSGS, but that was ruled out after the biopsy results. We then did genetic testing, as the doctors thought it could be Alport syndrome. So, we waited for weeks for the results, and they came back negative.

So, now we've been trying medications to see if we can find something that works.

- We started with lisinopril, and upped the dosage. But, we stopped because of the coughing side effects.

- We then started losartan, and are currently on this, at the highest dosage.

-We added farxiga, and are working up in the dosage with that.

Overall, these medications haven't proven effective in lowering the proteinuria. My son gets infusions of lasix about every week just to get the fluid from out of his body. He also plays baseball when he can, between infusions.

Up to this point, he has been a very healthy child, playing many sports and is in great physical condition. As all parents do, we're trying to find answers to anything, and we're trying to find a possible solution to our son's condition. At this point, once we max out the dosage of these medications, we will have to look at other options for this.

As of now, we have a diagnosis of thin basement layer kidney disease.

Also as many parents do, we feel that we just haven't been on the right path from the start. And I know that its natural to doubt the path when things aren't working. But, it's been three months of trying to find answers, and I'm at the point where I need to start searching for solutions here on the internet and within communities like this.

Thanks for reading, and any help would be so greatly appreciated!

[MatrixMatriarch]

Has he seen a nephrologist yet?

[BlueGuitar123 in reply to MatrixMatriarch]

Yes, he has. We've seen a team of nephrologists.

[MatrixMatriarch in reply to BlueGuitar123]

Got it, I wish I had any answers but I am hoping you find some soon. I’m sorry your family is experiencing this.

[BlueGuitar123 in reply to MatrixMatriarch]

Thank you for that. It means a lot to hear that.

[BearMama0321]

Hi there,

My 5yo son was diagnosed with CKD at 20 months old. He was born with two healthy kidneys but the consensus is that he had an untreated uti (despite us taking him to many, many doctors and ER visits for high fevers/inconsolable crying as an infant, no one checked his urine and I didn’t know to ask… I trusted the doctors!) that, due to him also have ureteral reflux, reached his kidneys and essentially destroyed his right kidney. He’s on lisinopril (and has a persistent hoarse voice; I never made the connection but will ask now!), Calcitriol, antibiotic and miralax to help with constipation. He had surgery to help with the urine reflux.

His case seems much more straightforward than your son’s but I remember the terror and countless questions, the self-blame (still have that, though it’s better), the disbelief in the first year or so of navigating his diagnosis. I can’t help from a clinical perspective, but emotionally… yeah. You’re in a club no one would choose to be in, but I try to remind myself that many types of kidney disease are manageable. It’s not a death sentence (I thought it was at first!) though yes, it will change so many things for him and you.

Anyway, here to offer support and solidarity. As a parent there’s nothing we wouldn’t do for our kids; I’d take my son’s kidney disease on myself in a heartbeat, no hesitation, if it meant he could not have to deal with it.

I will share that once the doctors figured out what’s going on, he’s been stable except for two hospitalizations for kidney infections (which were terrifying! He can’t stand to lose any function beyond what he already has; thankfully he didn’t). It just took a while to sort everything out. And while we have no clue what the future holds (which provokes a lot of anxiety, for sure, but I’m coping…), we just try to focus on what he can do today.

Sending the very best to you both. Feel free to direct message me.

[BlueGuitar123]

Thank you so much for sharing your story. I've felt a lot of the things you've shared... seeing him unwell and the uncertainty is the hardest at this point. We're continuing our journey and trying to narrow down the possible solutions. Thanks for sharing that, and thanks for the solidarity. Every day is a gift and we're trying to live that.