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Dent's Disease

What is Dent's Disease?

Dent's Disease is a rare X-linked recessive inherited condition that affects the kidney and is one of the causes of Fanconi Syndrome.

 

Dent's Disease is a rare X-linked recessive inherited condition that affects the kidney and is one of the causes of Fanconi Syndrome.
Prevalence Information of Dent's Disease has not been added yet.
Synonyms for Dent's Disease has not been added yet.
Cause of Dent's Disease has not been added yet.
Symptoms for Dent's Disease has not been added yet.
Diagnosis of Dent's Disease has not been added yet.
Diagnostic tests of Dent's Disease has not been added yet
Treatments of Dent's Disease has not been added yet.
Prognosis of Dent's Disease has not been added yet.
Tips or Suggestions of Dent's Disease has not been added yet.
References of Dent's Disease has not been added yet.
RDCRN Survey Created by LadaBL
Last updated 29 Sep 2016, 11:45 AM

Posted by debduarte
29 Sep 2016, 11:45 AM

Lada, is this different from the registry at Mayo? Deb Duarte

Posted by LadaBL
28 Sep 2016, 04:25 PM

Dear Dent mothers, fathers and patients, We have worked hard to create the survey at RDCRN (Rare Disease Clinical Research Network - NIH sponsored). No good response yet - only about 10 patients finished. Link below, please consider!!! https://www.rarediseasesnetwork.org/cms/rksc/Get-Involved/Contact-Registry This is an easier, faster form of research and allows people from all over the world to do it. You will be asked to join contact registry and then do the survey. Good luck! Takes 10 min for moms and a little longer for patients - parents can do that one as well, even if kids are over 18! Please remember, the outcomes of this disease depend on your participation. It is a slow process, but if there is no process, there will be no outcome. My warmest regards, Lada

Various Symptoms of Dents Created by emilysorenson
Last updated 28 Sep 2016, 10:14 PM

Posted by LadaBL
28 Sep 2016, 10:14 PM

Ask them to do phosphorus, FGF 23 and 1,25 vitamin D. Good luck! Who is your nephrologist?

Posted by kjsjd
28 Sep 2016, 09:36 PM

Hi Lada We are in the UK - I met you when you came to the RKD symposium 2 years ago. My son is on the Dents registry and we have filled out all the forms again recently for Barbra Seide... He is also now seeing a metabolic specialist, so if you let me know what tests you require, I can ask at our next appointment in October.

Posted by LadaBL
28 Sep 2016, 08:34 PM

What is his serum phosphorus? If you are in the US, we could include him in phosphorus study and measure phosphorus related hormones which I believe are extremely important for growth but not routinely measured. Lada

View Full Thread (9 more posts)
Recurrent stones, post transplant Created by valgraham
Last updated 17 Jun 2016, 09:03 PM

Posted by valgraham
17 Jun 2016, 09:03 PM

Hi K - good to hear from you. Glad your son's kidney function is stable. FJ is doing ok, thanks. Been on dialysis for a year but we're hoping he will get a kidney transplant later this year, fingers crossed!

Posted by kjsjd
6 Jun 2016, 04:06 PM

HI Val - not been on the site for a while. How is FJ doing? We met in London 2 years ago. My son is now 14 and has been on potassium citrate for several years now. His kidney function is stable and well maintained with no sign of stones as yet. Best wishes. K

Posted by valgraham
16 Nov 2015, 10:02 PM

Thanks you, Minu. That is very helpful and encouraging news. Sorry your husband has had problems too. FJ has always had stones, but fortunately they haven't caused him problems so far. Interestingly, he has never been prescribed or taken potassium citrate.

View Full Thread (5 more posts)
1st Dent clinical trial by Mayo Clinic Created by LadaBL
Last updated 14 Jun 2016, 06:37 PM

Posted by Dixie5346
14 Jun 2016, 06:37 PM

Do you have the results of this clinical trial yet? If so, should we increase phosporous in the diet and which foods are best?

Posted by tieshiea
9 Apr 2015, 03:36 AM

Thanks. I appreciate your time. T

Posted by LadaBL
9 Apr 2015, 02:30 AM

Great! Thanks for reaching out. I did not hear from the research coordinators but will ask. I'll email you. Lada

View Full Thread (3 more posts)
Dent's Conference 2016 Created by CaraM120
Last updated 6 Jun 2016, 03:43 PM

Posted by CaraM120
6 Jun 2016, 03:43 PM

Is there going to be a conference this year? I haven't heard anything yet, and last year they started talking about it around march or april.

Dent's conference 2015 Created by CaraM120
Last updated 12 Oct 2015, 02:06 PM

Posted by LadaBL
12 Oct 2015, 02:06 PM

I'm glad it worked! How was it? Lada

Posted by minu
11 Oct 2015, 01:37 PM

Worked when you started talking, Lada! Hope to see Jay's talk in video later. Thanks so much!

Posted by LadaBL
10 Oct 2015, 03:35 PM

Is it working now?

View Full Thread (2 more posts)
Dent Asociation Created by EvaK
Last updated 12 Apr 2015, 02:17 PM

Posted by EvaK
12 Apr 2015, 02:17 PM

Hi all, I have response from Asdent, they are already in contact with Mayo Clínic, so I hope your collaboration will be great for both. Big hug

Posted by LadaBL
9 Apr 2015, 02:33 AM

Thanks as always! Hope to see you in NY in October!

Posted by minu
7 Apr 2015, 04:17 AM

And again, Lada, if you need any translating or interpreting between Spanish and English please feel free to use me any time. Daniel should be somewhat able to help too.

View Full Thread (11 more posts)
Growth Created by Vicky_p
Last updated 8 Apr 2015, 06:27 AM

Posted by tieshiea
8 Apr 2015, 06:27 AM

My son Zander was dx with dents at 5 yrs. Now is 10.5 yrs. He is 4 ft tall my side.of family 8s short stature. His dad however.is 6ft 8 inch. We started endocrinology and the hand xray. Awaiting MD to get back to me from Stanford University. He had been seen at Stanford for 5 yrs now and luckily dr.potter there was able to dx him early and her him on chlorthalidone. (Sp) which he has been on since.but with varying dosages. He is also skinny. His wt is 56 lbs finally and that has taken 3 yrs to get there. As far as po4 he takes 750mg bid. Neutral phos. 2000 units.vit d just restarted that last 3.months. daily. 80 me kcl 30 20 30 dose during day to combat chlorthaladone k wasting. Avg. K level is 3.3-3.5. Lab about every 3 months. Also takes a milo ride to kick up his k levels. I have Zander in the study, or at least I returned the papers and hopes his data helps research. My concern is the obvious future kid. Failure, and transplant if and when it comes to that for him, but his overall fitting in. Being so short does not help in school. To make learning an issue he.was a.late talker 3 years old to make a 5 word sentence. Now he won't shut it. But he has adhd, and that lack of concentration and taking care of his disease in his future worries me. He is well aware of all his med and the rationale for their continued use and dose changes. It seems as if.from reading other posts the correlation of growth and learning is a factor is this disease process. Zander mom T

Posted by LadaBL
22 Jan 2015, 01:37 PM

I have the hypothesis that possibly Dent and Lowe patients don't get enough phosphorus in their bone as they hit the potential growth spurt (because they lose some through their kidney). One way to prove that is to show that the major hormone that causes release of phosphorus in the urine is below normal in Dent. So far 3/4 adult Dent patients in my study have it. Now I want to see if children (in particular) children in puberty have that as well. Growth hormone also increases phosphorus absorption in the kidney, and it's possible that that is the way it works. We don't know which effect it has on the bone of Dent kids. Lada

Posted by hamilt1
21 Jan 2015, 11:59 PM

I have three children, one with Dent's. Both of my two children without Dent's are tall...medium to extra large framed. My son with Dent's is thin, small framed, and definetly grew at a different rate. For a frame of reference, my 12 year old is 5'10 and 170 pounds. My 15 year old with Dent's is 5'6 and 110 pounds. My son also had sensory processing disorder.

View Full Thread (15 more posts)
oxalates Created by emilysorenson
Last updated 21 Jan 2015, 10:30 PM

Posted by LadaBL
21 Jan 2015, 10:30 PM

No, restriction is advised only if oxalate is elevated. The elevation could also be a result of calcium restriction in diet. Calcium should not be restricted. If less calcium is eaten, more oxalate is absorbed. My view is that possibly Dent patients do not get enough phosphorus, that is why I am studying phsophate regulating hormones for Dent in my FGF Study for Dent disease. We will hopefully learn something from it. I have just looked up our registry data. Few patients have oxalates in 50-60 range. Not most common but possible. Lada

Posted by hamilt1
21 Jan 2015, 09:52 PM

Do you recommend a low oxalate diet in Dent's even if the oxalate level is normal?

Posted by LadaBL
21 Jan 2015, 09:39 PM

High oxalates are not common for Dent. However, sometimes even levels this high can come from dietary sources, but you could have him tested for primary hyperoxaluria. It is very important to minimize oxalate in diet. Did you review it with the nephrologist or a nutritionist? High doses of vitamin C can also give you high oxalate, make sure he is not getting that. We also have a center for primary hyperoxaluria if you would need genetic testing. Where did you get with this so far? Lada

View Full Thread (1 more posts)
New to Dent's Created by IsaacsMom
Last updated 21 Jan 2015, 09:58 PM

Posted by LadaBL
21 Jan 2015, 09:58 PM

Dear Jack, Sorry for the late reponse. We were terribly busy submitting all the required paperwork that would allow us further funding for Dent disease, which we have finally achieved. I am also personally very busy on my FGF Dent study, which is giving me some exciting preliminary results I will be able to share. Now we have 5 more years of funding and we plan to use it in the best way possible. There is a difference between the Contact registry and the Dent Disease Registry. Contact Registry only has the contact information, whereas the disease registry has the particular information about your disease - blood tests, urine tests, which are stored de-identified. Meaning by number and not your name.This information can later be used to draw some conclusions on disease progression, prognosis etc. Proudly, we started with 10 and now have 130 pts in our Dent Disease Registry. Did you get in contact with our coordinator Barbara Seide? Lada

Posted by minu
23 Apr 2014, 04:58 PM

Hi Jack. Welcome to the forum. Lada would be in a better position to answer your questions as I am no doctor. But as a mom of a 22 year old (asymptomatic like you) Dent patient that has known since he was 3 years old, I would say, yes, the severity and speed of loss of kidney function varies from one individual to another. And, unfortunately, like other kidney diseases, your kidney function in most cases keeps decreasing gradually throughout the years and you do not feel any symptoms until your kidney function is extremely low (in need of dialysis or transplant). My son has been taking a variety of meds since he was 3 (allopurinol, thiazide, fosinopril, potassium citrate and now crestor), but I do not necessarily think they have really helped in slowing down the disease. We will never know. I agree with your doctors and Jay, that probably the best thing is to eat healthy (low protein, low salt) and drink lots of water.

Posted by Jack1
23 Apr 2014, 03:11 PM

Hello, I am new to the Rareshare community and sort of new to Dent's. I have been aware of a Kidney problem since I was 11 (I'm now 27) when it was noticed in a standard medical test for a Visa that I had very high protein in my urine. Following this I had a series of further tests, and a biopsy and was finally told that I had "probable Dent's Disease" in my early teens. The expectation was that Genetic Testing would be performed but the University (in the UK where I am from) didn't have enough samples / money to go through with it. I have had a succession of Nephrologists since finishing with my Paediatrician, all of whom have given me different advice, pills, no pills, low oxylate low protein diets, no diets. Excluding a 1-1.5 year period where I took allopurinol, Amiloride, Bendroflumethiazide, and Ramipril I have taken no meds. The only proactive advice I received prior to the medications was to drink plenty of fluids and eat a diet that is not high in salt. I had always drunk lots and so this wasn't difficult. As such as a teenager / adult I have maintained a pretty constant intake of appx. 5-7litres per day. My latest Nephrologist recommended that I have the genetic testing done, as then it would confirm the appropriate direction for the Treatment. This came back positive and I have Dents Disease 1. This new outlook has spurred me to take a more proactive approach myself, so I have joined the Contact Registry etc (Lada please let me know as I think I m supposed to be joining more than one registry having read some of the posts on here). One of the main interesting things that I have noticed in reading the forums is that lots of people seem to be relatively asymptomatic (as am I) and I would be interested to know if this reveals anything in particular about the severity of the disease in each individual. Look forward to hearing from you all, J

View Full Thread (17 more posts)
Community Resources
Title Description Date Link
Dent Registry

I am happy to inform everyone that Dent Registry is started at Mayo clinic. We hop that we can gather more information and advance knowledge on the disease and therapy.

 

We are looking to enrol all patients with Dent all over the world. If you are interested, please check out our website. Please feel free to ask any questions.

 

 

Lada

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

LadaBL

Hi,

 

 

I am a nephrologist (kidney doctor) who works at NYU in New York City. National Institutes of Health has sponsored research of Dent disease starting Sept 2009 which includes, and starts with, forming Registry of Dent disease patients.

 

 

Dent disease manifests usually with low molecular weight proteinuria (loss of protein in the urine) and often with kidney stones or even calcifications of kidney. Significant number of patients develop kidney failure and need dialysis or transplantation.

 

 

Registry means collection of information on individual patients which is then stored, anonymously, in one database. That allows us to analyze collected information on large group of Dent patients, which has never been done before, because physicians typically take care of only few Dent patients (usually 1-5).

 

 

Our website is http://www.rarekidneystones.org/dent, where you can look up the available information.

 

 

Contact:

 

Barb Seide| Study Coordinator | Mayo Clinic Hyperoxaluria Center | Nephrology Research | Phone: 507-293-4112 | 800-270-4637 | fax: 507-255-0770 | seide.barbara@mayo.edu | hyperoxaluriacenter@mayo.edu.

 

 

I would be happy to answer any of your questions. My email is lada.bearalasic@nyumc.org or LadaBL@yahoo.com.

 

 

Several people from this site have contacted us. Congratulations for making the initiative and moving the knowledge forward!

 

 

 

Stay strong!

 

 

Lada

 

 

 

Expert Questions

Ask a question

Dixie5346 Message
1 Oct 2016, 07:48 PM

Do you have the results of the Dent phosporous clinical trial yet? If so, should we increase phosporous in the diet and which foods are best?

Answer

This question has not yet been answered

minu Message
1 Apr 2015, 04:16 PM

Hi Lada. How are you?

 

I just saw te question from Mari Carmen from Sevilla in Spanish. I don't know hoe long ago she wrote but I can translate.

 

 

".Hi Lada. My 14 year old son has been diagnosed with Dent 1. He has losses of calcium, proteinura and hematuria. They are only giving him acalka and now Vitamin D. But he is not as tall as he should be for his age, and now two small bumps have come out on his chest. The doctor says this is normal growth but I am very concerned. Thanks for your answer.

Answer

Thanks. You can answer her that growth delay is common in Dent disease and that sometimes children get treated with growth hormone.

 

 

Best,

 

 

Lada

CaraM120 Message
12 Feb 2015, 03:52 PM

Lada,

 

My son has ADHD and they are wanting to start him on medication. Do these types of medications negatively affect the kidneys?

Answer

I don't think they should but you can ask me specifically when you know the name of the medication.

 

Good luck!

 

 

Lada

maricarmen31 Message
29 Oct 2014, 08:00 AM

Hola Lada, mi hijo tiene 14 años y le han diagnosticado la enfermedad de dent tipo1 soy de sevilla y tiene perdidas de calcio,proteinuria y hematuria y solo le estan dando el acalka y ahora vitamina d pero no esta lo alto que tendria que estar con su edad ahora le han salido dos bultitos en los pechos y el medico de familia dice que es normal del crecimiento estoy muy preocupada espero tu respuesta gracias.

Answer

Please have somebody to translate in English?

 

 

Best,

 

 

Lada

maricarmen31 Message
13 May 2014, 10:47 AM

Hola buenas tardes lada soy mari carmen la madre de un niño de 13 años con enfermedad de dent mi preocupacion es la gran perdida de calcio que tiene mi hijo en la orina de las 24 horas que cada vez va perdiendo mas calcio eso es bueno.

Answer

Please look at the previous answer

 

 

Lada

maricarmen31 Message
13 May 2014, 08:59 AM

Hola buenos dias Lada me llamo mari carmen y tengo un niño de 13 años que le han diagnosticado la enfermedad de dent me gustaria saber si es normal que el porcentaje de calcio perdido en la orina de 24 horas lo tenga en 11, no tendrian que ponerle algo para esa perdida tan grande de calcio? gracias Lada.

Answer

Hi Carmen,

 

 

I do not speak Spanish, unfortunatelly.

 

If you were asking if it was expected to have high calcium in the urine for Dent patients, I can tell you that it is very common.

 

 

Maybe you can find somebody to translate to English?

 

 

Best Regards,

 

 

Lada

emilysorenson Message
29 Mar 2014, 10:28 PM

Lada , how long does it take to get the genetic tests results for Dents? Thank you, Emily Sorenson

Answer

Emily, I apologize, I did not get the alert for this question and did not check the site for some time.

 

Usually, in our lab I think it takes about a month.

 

I have asked our geneticist and will let you know.

 

 

Lada

 

 

Found out: 6-8 weeks on average.

rreynolds444 Message
26 Mar 2014, 08:44 PM

Lada,

 

I have a question about Dent's Disease & its progression. I realize you can't predict what is going to happen with my son, but I am curious as to whether you have heard/seen any trends with regard to its progression. My son, Matthew, turns 15 years old next week. His creatinine is 1.2 as of today & he weighs approximately 114. His creatinine has been going up .1 for the past 4 labs. He has labs every 3-4 months. At this rate, if it keeps progressing at this rate, he will need a transplant before he reaches 20. I am very concerned. Are there any statistics? Could puberty cause the creatinine to increase at a faster rate & then maybe it may slow down as he gets older? What is the average age of transplant with this disease? Is there anything that has been found to slow the progression? Another thing.....can a carrier be a potential kidney donor? I have 4 daughters & 3 of them are Dent's carriers. Thank you so much for your time.

Answer

Dear Rosemary,

 

 

I would not worry about the transplant at this time, his kidney function is very good.

 

Carriers could theoretically be donors, however we are not sure if we recommend it or not.

 

If the donor has proteinuria or stones, it is probably not such a good idea. It has been done, however.

 

It would have to be decided on case to case bases by a transplant center.

 

 

As the child grows and gains muscle mass, the creatinine could increase.

 

Citrates have been shown to decrease progression on mice, nothing known with certainty on humans.

 

ACE inhibitors when significant albuminuria potentially beneficial, no data.

 

Thiazide diuretics? Unknown if affect progression.

 

You see, patients are asking us for advice but we have no data and cannot recommend.

 

Then we try to get data but patients are reluctant to participate in research!

 

And we go in circles.

 

In our study we are trying to see if phosphorus could be beneficial in reducing calcium in urine, kidney damage instead of thiazides that have side effects often difficult to tolerate.

 

 

Regards,

 

We could talk on the phone this weekend, or Fri pm if you like, since this is so complex.

 

My cell is 917-572-6379

 

 

Lada

 

CaraM120 Message
12 Mar 2014, 02:53 PM

My 8 year old son and my 32 year old brother both have Dent's, and my brother has recently been placed on dialysis due to renal failure, and he is currently on the transplant list. I am a carrier of dent's, and have mild symptoms, excess protein in the urine, have had kidney stones several times, Am I a canidate to donate a kidney to either of them if I am a match?

Answer

This question has really not been answered properly as of yet.

 

 

We have heard of a mother who has donated the kidney to her son and both were doing well, however there is no clear recommendation.

 

 

If you actively form stones, and have significant stone on CT and have significant proteinuria, that is probably not a good idea.

 

I would say, you don't have absolute contraindication but a relative one and you would have to be evaluated by a transplant center.

CaraM120 Message
29 Jan 2014, 06:52 PM

Hi Lada,

 

Thank you for responding to my earlier question. My son is 8years old, and we have since stopped the enalapril because it was having absolutely no effect on him and was making him feel bad. We recently discovered that my brother, who is 32, has Dent's also, and he is in kidney failure and will be started on dialysis soon. We are hoping this is not typical and this is not the path that my son will go down. Does kidney failure usually onset this quickly with Dents pts? Our son is on the dent's registry and we are willing to enroll him in the study and I'm sure my brother would participate also.

Answer

It is quite common that the older relative gets a diagnosis only after a child is diagnosed.

 

This is a rare disease more unusual in children and pediatricians are better in making the diagnosis.

 

 

It is in the expected age range that your brother developed advanced kidney failure, however an early part of that age spectrum. Usually for Dent, dialysis is needed between 30 and 50, so this was early.

 

 

Our goal is to study more the disease and test interventions that could delay the progression of the disease. That is why we are doing this study.

 

 

The good news is that just because they have the same mutation, the disease does not have to behave in the same way in the two of them. Variability in the family is quite common.

 

 

I am glad you are in the registry. As soon as our consent form for children is approved, I will let you know. Unfortunatelly, for now we are not testing the patients with advanced disease if they have high PTH (parathyroid hormone) and your brother likely has it above normal. You can ask him if he knows, but he should definitely be in the registry for any further research and for better understanding of disease.

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Discussion Forum

RDCRN Survey

Created by LadaBL | Last updated 29 Sep 2016, 11:45 AM

Various Symptoms of Dents

Created by emilysorenson | Last updated 28 Sep 2016, 10:14 PM

Recurrent stones, post transplant

Created by valgraham | Last updated 17 Jun 2016, 09:03 PM

1st Dent clinical trial by Mayo Clinic

Created by LadaBL | Last updated 14 Jun 2016, 06:37 PM

Dent's Conference 2016

Created by CaraM120 | Last updated 6 Jun 2016, 03:43 PM

Dent's conference 2015

Created by CaraM120 | Last updated 12 Oct 2015, 02:06 PM

Dent Asociation

Created by EvaK | Last updated 12 Apr 2015, 02:17 PM

Growth

Created by Vicky_p | Last updated 8 Apr 2015, 06:27 AM

oxalates

Created by emilysorenson | Last updated 21 Jan 2015, 10:30 PM

New to Dent's

Created by IsaacsMom | Last updated 21 Jan 2015, 09:58 PM


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