@Lndnew, oh those ‘is this your first baby’ comments! I’m sorry to hear how challenging it was. Don’t be afraid to seek some counselling about it. I know it really traumatised me (along with some other events that happened regarding doctors during my pregnancy) and it took me 6y to be ready to go through it again. Not because of my lovely ds and the pregnancy/birth or anything itself, but just an overwhelming fear of the medical system and how much I’d had to fight.
I asked a lot about the antibiotics too. Parents in general are often told with healthy babies that doctors overprescribe antibiotics and they aren’t a good idea to be one all the time etc. However, with PUV babies, it really is best and the safer option to protect them from further damage.
We found Co-Amoxiclav caused sickness several times a week, so I kept a diary and the doctor then changed this back to trimethoprim. It was originally changed due to a trimethoprim resistant infection, so the right choice at the time, but long term didn’t work out as the sickness meant time off nursery (Toddler) etc. as you could never be sure what was a bug and what was antibiotic until after.
I also asked why they didn’t use the type of antibiotic prophylaxis that they used to treat the type of infections he got (pseudomonas infections). They explained it was purely to prevent the most common types of infections being added into the mix and causing damage on top of the PUV effects.
It took my DS until he was about 6/7y to stop antibiotics daily. We did notice he caught everything going round and couldn’t be certain it was the antibiotics, but gave him a high pre and probiotic diet for gut health to help boost immunity in case. We carried this on a good while after stopping antibiotics to give him the best chance of immunity through diet and he no longer catches everything. The doctors thought it was probably the antibiotics, but also said that some children just do catch everything going without them.
Ds definitely took longer to potty train, but I just made it something he could do in his own time and he was able to manage before school. I also bought him ‘training pants’ so if he didn’t quite make it in time, he’d have something absorbent on. He was always very private, so I had a little zippy bag for him with fresh pants and wipes and a wet bag, so if he had an accident at school or didn’t make it in time, he could change himself quietly and not have to be embarrassed by asking for anything. He practiced sorting himself at home, so he was confident he could do it. One other thing one doctor mentioned is to treat any constipation very quickly as it can push on the scarring.
I definitely think it can be much better as they grow and your ds will take it all in his stride. I’ve found that by about 7y, ds didn’t have so many toilet issues and so now we’re just crossing our fingers as we approach the teens!