My 6 month daughter is on peritoneal dialysis for more than a month now.
She developed infection in fluid, total nucleated cells 3000+.
After antifungal treatment it’s reduced now.
Fluid seems clear, no cloudy, but the count is still high 200+. We are going to get Doctor’s opinion on this.
Will infection be zero? Will it be there always till certain level?
We were told if infection continues, catheter tube will need to be replaced. As baby is only 6 months old, we don’t want anther surgery, as it is not very straightforward.
Please share experience.
Hello, I am very sorry to hear that you’re going through this with a newborn!
I guess here are my questions: do you know how your daughter developed peritonitis? What is the source? She has only been on PD for one month, and having an infection so early is concerning. I would want to make sure that internally, she doesn’t have any complications going on like a leak in her intestines. If the cause of infection is contamination, I would want to make sure that everyone understands how to prevent it from recurring.
Am I correct in reading that she had a fungal peritonitis, not a bacterial peritonitis? Or, was she treated with antibiotics AND a preventative anti-fungal to prevent a secondary infection? If it is a bacterial peritonitis, she may be able to have the current catheter saved if it fully clears. It depends on the type of infection and how it responds. Some bugs can “eat” the plastic of the catheter, making it impossible to get to all of the infection. If that’s the case, the catheter itself becomes the source for re-infection, and thus is dangerous. If it is a fungal peritonitis, the catheter will almost certainly have to be removed as these are more complicated.
It’s good that the fluid is clear, but the cell count still indicates peritonitis. The 3000+ TNCs that she started with were very high. There should really be none.
I see why you wouldn’t want her to have more surgery. She’s SO young. This is all so traumatic. If it comes to pass that the catheter needs to be removed because the infection is continuing, it may not be able to be replaced immediately as this would jeopardize the new catheter. Let us know what her doctor suggests doing, but it sounds likely it will have to be.
Once the PD catheter is removed, she will need dialysis access for HD. This is another procedure to place a different kind of catheter. She will likely need continued antibiotics and/or antifungals so the infection in her belly is treated. Once that is clear, she may be able to get a new PD catheter placed. That will have to heal and then it will be tested to make sure her membrane still works. Unfortunately, some infections can make PD impossible, hopefully this is not the case. If PD continues to work, which is probably the best thing to hope for besides a transplant, then she could return to that and have the “bridge catheter” removed and HD stopped.
It sounds like your team is watching the infection closely. Best of luck to you and your daughter. I wish I had an easier answer.
I am a social worker, not a physician, but I reached out to a very experienced pediatric nephrologist and shared your message with him. His response was similar to what JJTRN wrote. He said “A 6 month old baby with fungal peritonitis should have their PD catheter removed for successful treatment of the peritonitis. Of course, the child will likely need to receive HD for several weeks prior to the time that treatment is completed and the PD catheter can be replaced.”
In my experience, kidney transplant is the preferred treatment for children with kidney failure. PD is the most common treatment for children, but a number of infants have to switch from PD to HD before they can get a transplant. I wasn’t sure how much a baby needed to weigh to get a transplant. I found a recent article that reported an infant can get a transplant when s/he weighs 8-10 kg (18-22 pounds). You might ask your baby’s pediatric nephrologist about a transplant.
It is stressful for an adult when dialysis is needed. I can only imagine how stressful it must be for you as a parent of an infant on dialysis. Be sure to ask your baby’s kidney doctor to let the social worker who works with patients on dialysis and their families know if you need emotional support or help with resources. This site has information for parents about kidney disease and dialysis in children.
Thanks Jenn, Beth for replying.
Yes, it is stressful and I see it could be worse with persistent infection.
We started with antibiotics and steroids. First few connection disconnections we (parents) did, although we got training while we were in hospital, but I imagine that’s how the catheter must have got infected. Now we don’t do it, a trained technician does it for us.
Today, we did transfuse albumin 20%.
Doctors are waiting for culture examination of fluid. Earlier Doctor discussed that we would remove catheter, wait for 24 - 48 hours and place new one. Doctor felt preparing for HD is too early and was not certain about effectiveness as dialysis quantity required would be low comparatively and HD machine configuration wise. I think we will discuss it more when we get to it.
DNA test did find a couple of genes but of uncertain significance (DGKE, NUP93). Transplant feels far away as it’s not considered before 14-15 kg here, she is barely 5 kg.
The International Society for Peritoneal Dialysis (ISPD) published Consensus Guidelines for the Prevention and Treatment of Catheter-Related Infections and Peritonitis in Pediatric Patients Receiving Peritoneal Dialysis: 2012 Update. The pediatric nephrologist I reached out to is the first author listed on these guidelines. They might give you questions to ask the doctors treating your baby. https://journals.sagepub.com/doi/pdf/10.3747/pdi.2011.00091
I found a website where you can look up genes. It looks like these two genes are both related to nephrotic syndrome and DGKE is also related to hemolytic uremic syndrome. Both of these syndromes are associated with kidney disease and kidney failure. https://www.genecards.org/
Please excuse me for being a mom-type, but how is your baby doing? I’ve thought of her every day this week. Poor little peanut. How are you holding up?
I understand your concern about your daughter’s infection during peritoneal dialysis. I went through something similar with my child, and we found that Diflucan (fluconazole) was really effective in reducing the infection.
It’s great that the antifungal treatment has helped to reduce the infection in your daughter’s peritoneal fluid. Regarding your question about whether the infection will be completely eradicated, it’s best to follow up with your doctor for a more precise assessment. Infections can vary in severity and persistence, so your doctor will be able to provide guidance based on your daughter’s specific situation.
As for the possibility of needing to replace the catheter tube if the infection continues, it’s a tough decision, especially with a young baby. It’s essential to weigh the risks and benefits carefully and discuss them thoroughly with your healthcare team.
Hi all,
Thanks for the help and support.
We replaced catheter in end of 2022, infection got under control.
Things started to become pretty good.
Slowly her health improved, creatinine come in good range. Frequency of PD dropped from every alternate day to once or twice in week. Then PD was stopped for more than a week, still all tests were good. Doctors started thinking of removing catheter as it was no longer required. Tablets were getting fewer.
One day, mid April 2023, she had minor fever, didn’t eat much. Doctor said not to worry, minor viral.
Later in the day, she had cardiac arrest, Doctors could not bring her back, said she did not have strength. She was 10 months old.
We lost the battle.
On report, reason was “status epilepticus with hypoxemic respiratory failure”.
I hated to read this update. I’m so sorry for the loss of your baby girl. I can’t imagine losing a child. I hope you are comfortable reaching out to those who care about you for help and support when you need it. Grief counseling from a professional can also be helpful. I’m sending a virtual ((hug)) your way.