11 year old with recurrent fever

[Lucob2]

Hi has any one else has experience of this? My Daughter, 11, for the last 4 years has been suffering with recurrent fever resulting in treatment for sepsis, due to crp being 200-300. Symptoms look like a UTI at first but urine cultures have always come back neg as have blood cultures. She has both white and red blood count in her urine over 100. (16 samples of urine over 4 years) . This time they scanned her kidneys and found the right one was bright consistant with an infection but still no bacteria has grown. She has been in hospital for 10 days now, is on two lots of IV antibiotics and is only just starting to feel better with her temps finally stablising, however now her left kidney is bright. We seem to have an endless wait on blood tests to find out what is going on with most coming back in normal range (thank god). Infectious disease, and rhumatology are interested also but i just thought id ask if anyone could shed any light as to what they think this could be. Her symptoms are very specific as follows: day 1 bed wetting day 3 achy legs (1 of last symptoms to go) day 4 temp of 40 that we struggle to control to lower than 38, day 4/5 vomiting and lethargy. Crp >200, urine presenting as UTI, neg blood and urine cultures, (new symptom or never before found) inflammation of kidneys. She normally seems to respond to antibiotics except for this time where shes not responded as well hence two lots of highest dose they can give for her weight. Many thanks for reading, if you have any ideas at all I'd be happy to read about it everyone is rackingtheir brains here. Xx

[S_dillow]

did they test her for leukemia?

[Lucob2 in reply to S_dillow]

Sorry forgot to add she's otherwise fit and healthy between epidodes. Episodes can go for as long as 4 months or return within 3 -4 weeks even after a course of antibiotics usually given IV. Wouldn't she have a lot more symptoms in between episodes if it was anything like that?

[Helloyall in reply to S_dillow]

That would be a good path to follow!

[Lucob2]

Sorry forgot to add she's otherwise fit and healthy between epidodes. Episodes can go for as long as 4 months or return within 3 -4 weeks even after a course of antibiotics usually given IV.

[S_dillow]

i was askiñg because of the white cell count.rheumetologist might help

[Lucob2 in reply to S_dillow]

Thank you, I think bloods may have been sent for rhumatology, but I will double check, I need to start writing things down now.

[Pte82]

Lucob2, with all of the IV's and stress your daughter has experienced she may have developed a deficiency of B vitamins especially thiamine (B1). Investigate thiamine's importance for sepsis. Magnesium is needed for thiamine's activation however stress and certain antibiotics can cause magnesium loss. Inflammation may be a result of lowered gut diveristy. It takes about six months for the gut microbiome to recover from the impact of antibiotics. Please investigate the subject of dysbiosis and discuss this with her doctor,

[Lucob2 in reply to Pte82]

Thank you I will most certainly look into this, thanks

[Helloyall]

They check for cystic kidneys? They need to get a biopsy. Get a different nephologist too. Because the had started her on antibiotics that would skew the bacteria cultures but if it keeps reoccurring they need to look at different kidney diseases. Is she diabetic. Any ulcers?

[Lucob2 in reply to Helloyall]

Hi helloyall, thanks for responding to my question, the cultures bar a couple were all taken before antibiotics shes had a lot more than that but those ones where after antibiotics. Shes not diabetic and i dont know if she has an ulcer, she is booked in for a scan that can see scarring (if any) on the kidney, but the problem with this is that if she get sick again between now and then it gets pushed back again until shes 2-3 months inflammation free. I will ask about a biopsy, can I just ask what a biopsy may or may not show? What do I say I want it for if that makes sense? Thanks againHannah

[Helloyall]

Tumors cysts,fibrosis. they take a needle punch biopsy after scan. Then they see under the microscope what types of cells there. Biopsies often provide answers that CTs with contrast do not. Discuss with nephologist and I hope it is a pediatric nephologist.

[Lucob2 in reply to Helloyall]

Thank you, I'm going the hospital today with her so will mention all this. This is really useful. Many thanks 😀

[Lucob2]

Thank you everyone for your comments, My daughter has an appointment today for more bloods so I will mention all of the above. We should have an answer soon. Thanks again and best wishes x