48 years old here had since birth. Meds hasn't helped me. Was told i wouldn't live past 5. Water intake and knowing the warning signs of my body got me this far. Now im stage 4 ckd as well. My Lord Jesus is my great physician.
@@ferhatferhat5678 Yes Yes there is... theres 2 medications that work together to help the body keep fluids in and stops dehydration. Our doctor at children's hospital prescribed Endomethacin and hrydrochlorthyazide.. my 2 boys have NDI and were both diagnosed at 8 months..
@@ferhatferhat5678 has your doctor done a test to diagnose for NDI? Water deprivation test done at hospital. The treatment that worked for my boys worked almost immediately. 2 medications together worked to help body absorb fluids. The medication is for life but it treats their symptoms and made huge difference. It literally save their lives.
Hi me and my brother where born with it. Only 2 in England. Ot 2 drink 30 to 40 pints of water aday. Can't sleep more then 3,4 hours at a time. Still on the same meds since birth. My brother became slightly brain damage as hospital could help. Starve his brain with oxygen. Due 2 not drinking enough. Got know help here. Been told we would grow. Now my brother is 42 and 5ft 10inches. I'm 38 5ft 11inches. Salt not yeah.
you can't regulate your body temperature when dehydrated. having a fever can be a sign your dehydration has reached life-threatening levels and should be in an ambulance. i have DI and been waiting for water deprivation test to find out what type of diebetes insiphidus i have. some things that have helped my dehydration levels: mineral water (make sure its low sodium one), coconut water (don't drink if your sodium bloods are high) replenishes elelctroytes and dandelion root and leaf tea boil for 15 mins in a pot, drink 3 cups a day.
I believe I got it too. Few years Ago I got brain injury by getting hit by sharp knifelike piece of metal, not actual knife though. It was nothing and I could continue my daily life. Few years later I realised I was suffering about incontinence, though I thougth I can do some workouts to keep my pelvic floor in good contition, but everytime I did manage to get it to control it came back each time harder. First it was just few little drops. I think I realised this few month ago that something is not rigth , I had to go to pee and drink all the time my bladder is exploding after drinking. I am pretty sure it is Diabetes Insipidus and I really want to see doctor who diagnoses it. I really hope medicine will help for this cause
I have nephrogenic diabetes insipidus too, and I’m 13. My brother also has it and is 18. If ever you need advice, feel free to contact and there is also a very useful Facebook page with lots of people with nephrogenic diabetes insipidus, which I am part of.
How were you diagnosed? I think my son has diabetes insipidus or siadh. Any one that baby sits him complains about how he constantly urinates. He wets bed every night. He will be 5 end of July
Did doctor tell how long this treatment will take? My don diagnosed when he reached 2 years milestone. He was ok before that. Suddenly got high fever which isn't getting better tok one plus month to normalized we used antibiotics but i noticed he us wetting bed whole night passing huge amount of urine and drink 2 liter water in night only. Then dr did osmolity serum nd urine and water deprivation test and diagnosed he has NDI. He is taking medicines getting better but still we face electrolytes imbalance in couple of months. Sudden he lost his appetite.
also Chinese medicine doctor put me on rehmania, for kidneys, this helped me improve. rehmania herb has been researched clinically in sugar diebetes to help prevent kidney failure.
@@avikkkesh8346 my 2 sons have it.. diagnosed at 2 years and the other 8 months.. they take medication that helps their body stay hydrated , they are 25 and 26 years old now doing great..
My son was diagnosed with NDI quite recently. Just last month we had his treatment after water deprivation test. Trust me, we noticed lots of changes in my son's health soon after he started taking medicines. He had this problem since he was 3 months old and just last year we got ti know about this. He is 7 yo now. Since the day he suffered with this problem, we never saw him sleeping for continuous 8 hours. He would get in the middle of the night 3 to 4 times just to drink water and to urinate. But now after giving medicines regularly, we saw him sleeping for continuous 8 hours and even during the day time, he is not drinking water the way how he used to drink before. May Almighty Allah give healthy life to every child.
48 years old here had since birth. Meds hasn't helped me. Was told i wouldn't live past 5. Water intake and knowing the warning signs of my body got me this far. Now im stage 4 ckd as well. My Lord Jesus is my great physician.
My brother and I have lived with NDI for our whole lives. Im 23 and he is 21. So we know the struggles of it all!
Hi.mon bébé aussi à cette maladie.svp je veux savoir s'il y a un traitement pour le diabète nephrogenique
Please answer me.i have a problem with my baby
hi my daughter 4years has been diagnosed with NDI...I am worried.. will she thrive.
@@ferhatferhat5678 Yes Yes there is... theres 2 medications that work together to help the body keep fluids in and stops dehydration. Our doctor at children's hospital prescribed Endomethacin and hrydrochlorthyazide.. my 2 boys have NDI and were both diagnosed at 8 months..
@@ferhatferhat5678 has your doctor done a test to diagnose for NDI? Water deprivation test done at hospital. The treatment that worked for my boys worked almost immediately. 2 medications together worked to help body absorb fluids. The medication is for life but it treats their symptoms and made huge difference. It literally save their lives.
My son has this he is 43 now
He was diagnosed at 7 months
Hi me and my brother where born with it. Only 2 in England. Ot 2 drink 30 to 40 pints of water aday. Can't sleep more then 3,4 hours at a time. Still on the same meds since birth. My brother became slightly brain damage as hospital could help. Starve his brain with oxygen. Due 2 not drinking enough. Got know help here. Been told we would grow. Now my brother is 42 and 5ft 10inches. I'm 38 5ft 11inches. Salt not yeah.
you can't regulate your body temperature when dehydrated. having a fever can be a sign your dehydration has reached life-threatening levels and should be in an ambulance. i have DI and been waiting for water deprivation test to find out what type of diebetes insiphidus i have. some things that have helped my dehydration levels: mineral water (make sure its low sodium one), coconut water (don't drink if your sodium bloods are high) replenishes elelctroytes and dandelion root and leaf tea boil for 15 mins in a pot, drink 3 cups a day.
I believe I got it too. Few years Ago I got brain injury by getting hit by sharp knifelike piece of metal, not actual knife though. It was nothing and I could continue my daily life. Few years later I realised I was suffering about incontinence, though I thougth I can do some workouts to keep my pelvic floor in good contition, but everytime I did manage to get it to control it came back each time harder. First it was just few little drops. I think I realised this few month ago that something is not rigth , I had to go to pee and drink all the time my bladder is exploding after drinking. I am pretty sure it is Diabetes Insipidus and I really want to see doctor who diagnoses it. I really hope medicine will help for this cause
I have nephrogenic diabetes insipidus too, and I’m 13. My brother also has it and is 18. If ever you need advice, feel free to contact and there is also a very useful Facebook page with lots of people with nephrogenic diabetes insipidus, which I am part of.
How were you diagnosed? I think my son has diabetes insipidus or siadh. Any one that baby sits him complains about how he constantly urinates. He wets bed every night. He will be 5 end of July
I had a water deprivation test, alongside my brother who was around 5 at the time. I was only 9 months old so I’m not 100% sure.
Could you please provide the link for Facebook page. My son is diagnosed with NDI and we started his treatment in Mumbai quite recently.
Did doctor tell how long this treatment will take? My don diagnosed when he reached 2 years milestone. He was ok before that. Suddenly got high fever which isn't getting better tok one plus month to normalized we used antibiotics but i noticed he us wetting bed whole night passing huge amount of urine and drink 2 liter water in night only. Then dr did osmolity serum nd urine and water deprivation test and diagnosed he has NDI. He is taking medicines getting better but still we face electrolytes imbalance in couple of months. Sudden he lost his appetite.
also Chinese medicine doctor put me on rehmania, for kidneys, this helped me improve. rehmania herb has been researched clinically in sugar diebetes to help prevent kidney failure.
I was diagnosed with NDI as a baby. I'm 46 now with 2 kids. Besides a low sodium diet and drinking lots of water, I had a normal childhood.
My brother has this- hereditary. Diagnosed as an infant. He's 30 yo now- successful software engineer with 2 kids of his own.
mam I need to talk to you....
why did he have kids? shameful
@@avikkkesh8346 my 2 sons have it.. diagnosed at 2 years and the other 8 months.. they take medication that helps their body stay hydrated , they are 25 and 26 years old now doing great..
My son has this. Diagnosed as a infant hes 4 now.
Did they do a water deprivation test? My son is 21 months and is awaiting testing. I’m nervous about them doing this test.x
@@jayjayjonesharkrness I think so, he’s 7 now that was so long ago. He got really sick a few weeks after coming home so he was diagnosed very early
What symptoms does your son have?
Bless you, I went through alot with my little girl, she also has diabetes insipidus.
aww hope she gets used to it! You can definitely work on it - take it from me I have it and I have been feeling Ok for a good 23 years now :)
My son was diagnosed with NDI quite recently. Just last month we had his treatment after water deprivation test. Trust me, we noticed lots of changes in my son's health soon after he started taking medicines. He had this problem since he was 3 months old and just last year we got ti know about this. He is 7 yo now. Since the day he suffered with this problem, we never saw him sleeping for continuous 8 hours. He would get in the middle of the night 3 to 4 times just to drink water and to urinate. But now after giving medicines regularly, we saw him sleeping for continuous 8 hours and even during the day time, he is not drinking water the way how he used to drink before. May Almighty Allah give healthy life to every child.
@@mansoorislam8246 that's great to hear.. my boys have this and take meds and always have water with them.