Stem cells for Chronic Kidney failure children

Posted by miprincipe @miprincipe, Jun 12 3:13pm

My son is 4 years old and is on stage 3 of CKF. Does somebody know or has gone through the experience of stem cell treatment for kidney regeneration?

@miprincipe I have not been able to find any information on using stem cell transplant for chronic kidney failure, sorry to say.

Has your son been evaluated for a preemptive kidney transplant, perhaps from a family member? Have the doctors told you the reason for his Stage 3 kidney disease?
Ginger

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@gingerw

@miprincipe I have not been able to find any information on using stem cell transplant for chronic kidney failure, sorry to say.

Has your son been evaluated for a preemptive kidney transplant, perhaps from a family member? Have the doctors told you the reason for his Stage 3 kidney disease?
Ginger

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Hi Ginger, thanks for your reply.
My son was born with left multicystic kidney which is disappearing now. The right kidney got damaged by 3 UTI during his first 2 months after birth. Nobody in the family has kidney problems so we are assuming it is a congenital problem.
I don t really understand the concept of preemptice kidney transplant. Could you ease explain? Is it possible to do it during stage 3?
Thank you

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@miprincipe

Hi Ginger, thanks for your reply.
My son was born with left multicystic kidney which is disappearing now. The right kidney got damaged by 3 UTI during his first 2 months after birth. Nobody in the family has kidney problems so we are assuming it is a congenital problem.
I don t really understand the concept of preemptice kidney transplant. Could you ease explain? Is it possible to do it during stage 3?
Thank you

Jump to this post

@miprincipe A preemptive kidney transplant is done if the patient is able to qualify for a transplant, and there is a donor who matches. Most often, a donor is a living person, not a deceased donor. You might want to check with his medical team to see if this can be considered in your son's case.

If I may ask, what treatment is being done at the moment on your son! Do you know his kidney function level?
Ginger

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Thanks for your explanation Ginger. As per his nephrologist, he is at 35% relying on just 1 kidney. Meaning as per his height, weight and blood values, this the percentage that the doctor calculates. Is this what you mean?

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@miprincipe

Thanks for your explanation Ginger. As per his nephrologist, he is at 35% relying on just 1 kidney. Meaning as per his height, weight and blood values, this the percentage that the doctor calculates. Is this what you mean?

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@miprincipe Yes, that is his functioning value of the active kidney. You might want to question his dr if a transplant would be an option at some point. If there was to be a sudden failure of his working kidney, your son would need emergency dialysis, so that is a reality you should be prepared for, which your dr has probably talked to you about.

It is a difficult position to be in, isn't it, when your little one is ill. We want to give them the world, and search for ways to make them better. Having a congenital defect like your son has with his kidneys, creates a challenge to be upbeat all the time, so please remember to take time for yourself. I trust his medical team is following this closely.
Ginger

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Hi @miprincipe, I'd like to add my welcome. There are currently no FDA-approved treatments for kidney disease that use stem cells, but researchers are conducting clinical trials to test whether stem cell-based therapies for kidney diseases are safe and effective in humans.

There is a great deal of hope and a great deal of hype about stem cells. That is why Mayo Clinic offers a free consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.

REPLY
@gingerw

@miprincipe Yes, that is his functioning value of the active kidney. You might want to question his dr if a transplant would be an option at some point. If there was to be a sudden failure of his working kidney, your son would need emergency dialysis, so that is a reality you should be prepared for, which your dr has probably talked to you about.

It is a difficult position to be in, isn't it, when your little one is ill. We want to give them the world, and search for ways to make them better. Having a congenital defect like your son has with his kidneys, creates a challenge to be upbeat all the time, so please remember to take time for yourself. I trust his medical team is following this closely.
Ginger

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Dear Ginger,
I thank you so much for your dear words and your advice. Unfortunately, I don t feel we are in the best hands and this is why my husband and I think we should try other choices abroad. In the country where I live, UAE, medical service is reasonable in some segments, but in others far away from being advanced. My son, as per his delicate condition, having only one kidney available, needs the most advanced knowledge available. This is why I am trying to contact the scientists who are working on stem cells studies. Hoping I will end up on a reasonable option for my son, with the will of God.
Please let me know of any info, article, experience regarding this matter. It could be the way to follow. Thanks from the deep of my heart

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@colleenyoung

Hi @miprincipe, I'd like to add my welcome. There are currently no FDA-approved treatments for kidney disease that use stem cells, but researchers are conducting clinical trials to test whether stem cell-based therapies for kidney diseases are safe and effective in humans.

There is a great deal of hope and a great deal of hype about stem cells. That is why Mayo Clinic offers a free consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.

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Thank you so much for injecting hope….this is a very helpful information. Will contact them definitely.

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