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!
