Hi,
Our daughter, now just passed 3 years, has been having UTI since she was first diagonsed with SWCAH 2 weeks after birth. One important thing to note here is that she could come down with a fever that just would not go away even after giving her the paracethemol doses as recommended. Of course, along with this is her triple dose of her hydrocortisone.
We were so very fortunate that our Peads Endo who specialises in CAH referred our gal to her student, a Peads. on a Sunday evening ! He in turn took a very aggresive approach, banging her with antibiotics ( 3rd generation ) intravenous first and at the same time did a blood test. He was right ! Our gal's UTI had lead to septicsemia ! We could have lost her if not for that quick and alsolutely correct decision of the Peads.
She then went for a corrective surgery of her urinary tract. Unfortunately, it didnt work and till now she is still on antibiotics ( profelectic ). We have been told and have confirmed that this antibiotics is ok even till she reaches 10 years or so.
A month ago, we "tested " her UTI by stopping her antibiotics. Unfortunately, her urine culture results were not too encouraging. Her urine culture results , which we did once every 3 days, showed bacteria growth of about 30,000 - 40,000 org/ml. We have since "bang" her with one complete course of antibiotics ( AUGMENTIN )and she is now back on her profelectic dose of a/biotics ( Cefuroxime )
Things that you should consider would be to have a urine culture done once every fortnight. Cleaning of the private part after urination is also important. In the event of a fever, you should then NOT rule out the UTI playing up. Best advice I could have is " straight to the hospital " ( with her triple dose given asap ). As a supplement, we give her probiotics ( good bacteria ) to combat her UTI. This seems to have a slight effect for now as her bacteria count from her urine culture now is not as high as it used to be. Occasionally, we feed her with yogurt with " live culture ".
Please note that I am not playing doctor here just relating my experience with my gal, which I hope would be of some use to you / others. We are from KL.
Good luck.
