My sons doctor is no losing hope in trearing his nephrogenic insipidus says "well he's not following the text book" and now is telling us she believes that there might be more of a serious issue going on and is referring us to go to Boston children's hospital he's only 4 months old and I feel like the doctors here in vermont are already giving up hope.. does anyone have an suggestions or things that have worked for them
I don't have personal experience with this, but since no one has answered you yet, I thought I'd give you some
background information from my research. The disease is rare. This is from MedlinePlus:
"Diabetes insipidus - nephrogenic
Nephrogenic diabetes insipidus is a disorder in which a defect in the small tubes (tubules) in the kidneys causes a person to pass a large amount of urine and lose too much water.
Normally, the kidney tubules allow most water to be removed and returned to the blood.
Nephrogenic diabetes insipidus (NDI) occurs when the kidney tubules do not respond to a hormone in the body called antidiuretic hormone (ADH), also called vasopressin. ADH normally tells the kidneys to make the urine more concentrated.
As a result of the defect, the kidneys release too much water into the urine. This causes the body to produce a large quantity of very dilute urine.
NDI is rare. Congenital diabetes insipidus is present at birth as a result of defect passed down through families. Usually men are affected, though women can pass the gene on to their children.
Most commonly, NDI develops because of other reasons. This is called an acquired disorder. Factors that can trigger the acquired form of this condition include:
Blockage in the urinary tract
High calcium levels
Low potassium levels
Use of certain drugs (lithium, demeclocycline, amphotericin B)"
Usually diabetes is due to a lack of insulin which is made in the pancreas or due to insulin resistance in the body. In nephrogenic diabetes the problem lies within the tiny tubules of the kidneys. Since this is rare, you might not have many people respond to your question. I also can see why you were referred to Boston Children's Hospital. You need to go where your son can get care from Drs. and others who are familiar with his disease. God bless...
Hi Mason, I have a three month old son with NDI. Are you currently seeing a pediatric nephrologist? We are working with a pediatric nephrologist at Johns Hopkins. We meet with her every other month or so. In between those appointments we go to the pediatrician weekly and get labs done weekly. Our pediatrician then follows up with the nephrologist who decides med changes. We've been doing good on the hydrochlorothiazide right now. The doctor increases his dosage as his weight increases.
I'm not sure if this will prove helpful or not but we did notice that his sodium level skyrocketed when we switched to formula for a day. At the time the NICU doctors at JHH were curious to see if his sodium level was affected by my breast milk. Turns out the formula did him no good. However I should point out that what they tried was a preemie formula (because he was born at 33 weeks) and not a renal formula. At discharge I was given a script for a renal formula (Simlac 40/60 I think) and was assured it would be safe for him but I have not tried it yet for fear they may be wrong and we won't have the luxury of nightly lab draws like we did then.
A question for you if you don't mind. Have you found any other support group for this? I'd love to connect with other parents who are dealing with the same thing. This is all new to me, as I'm sure it is for you, and it'd be wonderful to meet other parents who have gone through the infant/first diagnosis part of it. Good luck with everything!
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