For the past year, my 9 year old daughter has been getting regular immoglobulin treatments (Gammumex)which are responsible for a miraculous improvement in her mobility, since she has Chronic Inflammatory Demyelating Polyneuropathy. For almost a year she got the treatments at 2 week intervals and more recently at three week intervals. These IVIG treatments, necessary as they are, are hard on the liver and kidneys, but do you know just how toxic these IVIG treatments can be to a child’s kidneys over time? Have you heard of this type of treatment ever damaging the kidneys? She doesn’t get an especially high dose, just average, and her neurologist says any irregular reading on the kidney and liver test we took should be disregarded because that’s just due to the IVIG’s. But because this is a rare disease, most of the frequency/dose of the treatment still involves guesswork and experimentation, so I remain watchful for signs of stress on her body. In the last several months she is getting bladder infections now and then that she didn’t get before. So far they just go away with cranberry juice. Then in the last 6-7 weeks I usually have to push her to eat because she frequently gets stomach pain. She was never a big eater to begin with so I worry about her getting enough protein and losing alot of weight again, which she did when she was initially misdiagnosed, wasn’t getting these treatments, and lost most of her mobility. What scares me most is that I read everywhere about how there are no symptoms of kidney disease until it’s advanced. So should I be proactive/concerned, then? If you say yes, my next step would be to show the readings we have to pediatric kidney doctor in our hospital system, to see if a more detailed kidney/liver test should be taken The test the neurologist ordered wasn’t, I was told, but that’s because her neurologist is unconcerned. The reason I feel the need to check with a third party at times is because he was the one who misdiagnosed her, so I had to go to another doctor and then go back and convince him to give her these IVIG treatments, which I think saved her life.

I would recommend blood and urine testing for kidney disease at least every three months to monitor kidney function.  This should include a serum creatinine and an estimated glomerular filtration rate (eGFR).  Urine testing should be for blood, protein and infection.  It is true that intravenous immune gamma globulin (IVIG) treatments may rarely be associated with kidney damage.  This does not occur with the newer formulations of IVIG, but still is a risk.

I suggest that you discuss this with your pediatrician and ask for monitoring and testing.

Tests to measure kidney function click here:


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