Hello, posting here for traffic.
My little one was hospitalised with an infection at 6 weeks old and we have since had tests and they have found grade 4 reflux on one side, grade 2 on the other.
The kidney attached to the grade 4 is scarred and shrunk.
She still has 100% function. One is doing 30%, the other doing 70%.
We have been referred to another hospital for a review of treatment plan (I assume they want to do surgery as have referred to the bigger specialist hospital in the region).
I still have not had a proper conversation with consultant. What should I be asking? Should I be pushing for this to be resolved asap?
She is now on prophylactic antibiotics. Could she still be damaging her kidneys just through virtue of them filling even if she doesn’t have an infection.
In the early days when we were waiting for the tests I said she seemed like she was in a lot of pain. These would come in attacks, so indistinguishable from colic really. But as soon as she had any strength she has always been pushing and fighting. Kicking legs. Doing downward dog in bed. Literally from 2 months old. They said she wouldn’t be in pain. But now with the diagnosis and I have the vocab to google. Kidney attacks from damage are incredibly painful according to google. I think this might still be happening.
Any advice or experiences with this would be greatly appreciated. She has just turned 7 months now and all this fighting has made her so strong she is pulling up and nearly walking. This is not normal imo.