anyone in this world have NEPHROGENIC DI?

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everyone is central. central and nephrogenic are two totally different things just like DI is not Diabetes mellitus. I am convinced these people do not exist and my son is the only person in the world with NEPHROGENIC DIABETES INSIPIDUS aka non-responsive to ADH hormone or any type of hormone therapy. Kids, families anyone??? Looking for other parents that are genetic carriers that have children BORN with this disease.

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  • Posted

    Hi Megan58879 interestingly I am waiting confirmation of (NDI) when I go for my Deprivation test on 27 October 2016 at Queen Alexandra Hospital, Hampshire (UK). Currently appear to have all the known symptoms but could also find I am seasonal ( only seems to appear between Mid Aptil to Mid October) in warmer times, but as yet has not been clinically proven?

    Will keep you advised.

    Derek

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    • Posted

      Sorry should have been 20 September 2016 for Tests & seeing Endocrinologist on the

      27 October 2016.

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    • Posted

      sounds like central DI. nephrogenic DI is definitely not something that could be seasonal, and it shows its nasty self soon after birth. It's a condition you wouldnt be able live through childhood without treatment. Kids are very sensitive to this. Nephrogentic is caused by a genetic mutation, if aware of this mutation you will see these signs in the fetus before birth. Be aware, not many doctors know the difference.

      Central Di (which is lack of hormone from pituitary gland), there have been cases where people have made smaller than normal amounts inconsistantly of the ADH hormone giving you some function from time to time, or low function all the time. The reason warmer months it appears is because your body doesnt rehydrate as quickly as others and sweating will throw your balance off quite easily. Activity will throw this balance off easily, and consuming foods high in salt will as well.

      They will starve you of water. With DI your urin will always look as if you are hydrated. If you do not drink water, and your 24 hr urin does no concentrate, they then take a blood test to confirm high sodium. The "safe" range for sodium is 130-145. If you have a sodium higher than 145 you definitely have DI. Then they go about which one you have, Central or Nephrogenic. 99.9% of the time later in life, it is central DI. Which they can tell by giving you the synthetic form of the adh hormone called Vassopressin, also known as DVVAP. Central DI responds to this quickly. The hospital should reduce fluid through introvenus to a sodium of .222% (the standard iv fluid will actually dehydrate you further). However, if you do not respond to this hormone within 24 hours, you have nephrogenic. It does NOT take longer than 24 hrs for the synthetic hormone to work (they injected 5x the adult dose of DVVAP into my son for 2 weeks before I refused treatment and requested a nephrologist). NDI they treat with dieuretics. This is much harder to balance out. It can take days to balance the system and find the dosage and food and activity and it can be thrown off very easily taking weeks to rebalance. 

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    • Posted

      Hi thanks for the information on the possible types of (DI) I may have & hopefully this will be confirmed after tests on 20 September 2016.

      i will be just relieved to find out which ever as long as then my conditions can be recognised & hopefully a care plan formulated. 

      At at the moment I am self diagnosing & managing.

      kind regards

      Derek

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    • Posted

      here if you have questions. Even though NDI and CDI are treated differently, the problems are very much the same. Its a tough world to adjust toand it can be frustrating having a rare disease. We have been on a rollar coaster ride since my son was born. I wish you the best of luck
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