Gout & kidney issues with my 20 yr.old son

Posted by beachtherapy @beachtherapy, Sep 12, 2019

Hello, my son is almost 21years old and he has had a variety of issues going on. When he was 18, I took him to ER due to lower back pain, turns out it was infection in both kidneys. ER dr. was curious how this could be at such a young age. He has/does have blood in urine, had a surgery to confirn no tumors. That checked out fine but still has blood in urine and back pain comes and goes, not real frequent though. Then about two years ago, he got foot pain in right foot, more trips to ER and dr.s for multiple x-rays, this pain comes around about every 6 months or so. He would get inflamatory meds and pain meds, pain goes away but what is it? Went to a specialist and he advised its Charco Marie Tooth Syndrome. He had a nerve test done to confirm, that was good, no damage at all. He had a genetics test done, this had three undetermined genes, so no real answer here if he has the syndrome. The specialist advised a major foot surgery, re directing tendons, reconstructing bones, we weren't convinced it was CMTS so we put surgery off for now. Specialist mentioned there is no cure, just try to relieve the problem. Thats alot to go thru for a 50/50 chance of relief. Last foot pain/ER visit was April 2019, this is when CMTS was brought up and the screenings were done throughout the summer. Now, the foot pain has re visited, this time in his left foot. Went to a local family dr. He said its tendonitis or gout. Did the blood test, uric acid is high, he has gout at 20 years old. I am curious if this is related to the kidney issue we never got results-diagnosis from. Austin (my son) has an uncle (AJ) thats 21 yrs (yes, you read it right, my husband just found his dad 7 years ago now, this is his dads son) and he is on the kidney transplant list. His was brought on by high blood pressure, he is very weak, possibly nursing home bound and would not be strong enough for a transplant right now. Plus, Austins cousin (Brenden)had a kidney surgery at 18 years old and is fine now. This cousin is my husbands twin sisters son (Brenden). I wonder if there is a connection here? All the kidney problems, boys, around 18 years old the problems began. Plus, I am afraid we might be missing some serious condition my son might have if the kidneys and gout are happening because of kidney disease? Maybe the foot pain has been gout all along, this was the first time gout was mentioned or tested for. He maybe doesn't have CMTS, if anyone has suggestions that would be great! Thanks for reading 🙂

Liked by Leonard

@beachtherapy Thank you for joining the community at Mayo Connect, and welcome. We are fellow patients, family members, and caregivers who share our experiences and feelings, and offer support. No doubt it is pretty scary to hear so many different things about your son. If your doctor has not recommended a workup by a nephrologist for kidney issues, it may be worth pursuing that. There may be a familial tendency to kidney disease, and knowing the history of other family members is very helpful for a kidney doctor to know. As for the gout, check with a rheumatologist. I have gout, and in fact take medication to keep my uric acid levels in the normal range. There is a whole list of foods to avoid when you have a tendency towards gout https://www.mayoclinic.org/diseases-conditions/gout/symptoms-causes/syc-20372897 . I do have to watch my diet pretty carefully, because I also have a rare kidney disorder. My guess is that you will hear from several others who experience gout, and will also share their kidney disease journeys. Will you come back and let us know what you find out, please?
Ginger

Liked by Leonard

REPLY

@beachtherapy
Hi there,
It’s obviously impossible to know what I’d do in your son’s situation but I have seen quite a few botched foot surgeries and a physical therapist said “I wouldn’t have surgery on my feet. Many others may have had excellent results. The age getting the Gout doesn’t really surprise me although it may be a little early. Men get gout at a much earlier age and get it more frequently.
I hope he gets properly diagnosed soon and feels better soon.
Jake

REPLY
@gingerw

@beachtherapy Thank you for joining the community at Mayo Connect, and welcome. We are fellow patients, family members, and caregivers who share our experiences and feelings, and offer support. No doubt it is pretty scary to hear so many different things about your son. If your doctor has not recommended a workup by a nephrologist for kidney issues, it may be worth pursuing that. There may be a familial tendency to kidney disease, and knowing the history of other family members is very helpful for a kidney doctor to know. As for the gout, check with a rheumatologist. I have gout, and in fact take medication to keep my uric acid levels in the normal range. There is a whole list of foods to avoid when you have a tendency towards gout https://www.mayoclinic.org/diseases-conditions/gout/symptoms-causes/syc-20372897 . I do have to watch my diet pretty carefully, because I also have a rare kidney disorder. My guess is that you will hear from several others who experience gout, and will also share their kidney disease journeys. Will you come back and let us know what you find out, please?
Ginger

Jump to this post

Thanks for the information Ginger. Austin does have a dr. appointment with a Urologist in early November but I will contact the nufro, they may take time to get appntmnt. I will absolutely keep the page posted, thanks again!

REPLY
@jakedduck1

@beachtherapy
Hi there,
It’s obviously impossible to know what I’d do in your son’s situation but I have seen quite a few botched foot surgeries and a physical therapist said “I wouldn’t have surgery on my feet. Many others may have had excellent results. The age getting the Gout doesn’t really surprise me although it may be a little early. Men get gout at a much earlier age and get it more frequently.
I hope he gets properly diagnosed soon and feels better soon.
Jake

Jump to this post

Thanks Jake!

Liked by Leonard

REPLY
@jakedduck1

@beachtherapy
Hi there,
It’s obviously impossible to know what I’d do in your son’s situation but I have seen quite a few botched foot surgeries and a physical therapist said “I wouldn’t have surgery on my feet. Many others may have had excellent results. The age getting the Gout doesn’t really surprise me although it may be a little early. Men get gout at a much earlier age and get it more frequently.
I hope he gets properly diagnosed soon and feels better soon.
Jake

Jump to this post

@beachtherapy If you haven't yet, take time to document the family history [relative, issue, onset of disease if known, severity, etc] in written format. Also, your son's issues and their history. Take it from someone who is currently dealing with new specialists due to a move. No matter how often I go to doctors, new settings can be intimidating, and wondering if they got everything right! This past week I went to a new nephrologist, and had printouts of lab work and biopsy results from 4.5 years ago. He took copies of what he needed, so he will have a basis for his research. As patients and/or caregivers/family members, it is important that we have accurate information available to share, rather than expecting a medical professional to go hunt it down from previous doctors. It also shows we are involved, advocate for our own health, and gives us a feeling of responsibility. I look forward to hearing what the doctors say to you!
Ginger

REPLY
@beachtherapy

Thanks for the information Ginger. Austin does have a dr. appointment with a Urologist in early November but I will contact the nufro, they may take time to get appntmnt. I will absolutely keep the page posted, thanks again!

Jump to this post

Hi @beachtherapy, I was wondering how your son is doing and if you've had the appointment with the urologist. Hope you've got some more information and direction on what to do next.

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