April 30, 2024

Long post. We are at a loss on what to do..I wish that I was writing to tell you that Tate as doing well and the medication we fought for has cured him, unfortunately that is not the case. I am hoping and praying that by sharing this post that we can find someone that can help or knows someone who can. We are desperate to find anyone that can get Tate relief for his chronic kidney condition. 10 trips to the Mayo Clinic in Arizona have not helped. His medical records are becoming as thick as encyclopedias. We are willing to go anywhere in the world. Please share..hopefully your/our network knows just the right Doctor/Hospital/Specialists.

Amy wrote this letter to Lisa Sanders, M.D., Her latest book is "Diagnosis: Solving the Most Baffling Medical Mysteries. She got an automated response saying that she only works w Long Covid patients now.

"I am a desperate mom from Texas, who has exhausted all measures into saving my son from massive amounts of kidney stones. I have sought out many doctors and tried hundreds of things. No one has been able to help or really even cared to try because no one knows what to do.

At 17 years of age, my son Tate started producing kidney stones. We are talking 70 at a time. No joke! He is now turning 25 and still continues to pass stones weekly and sometimes daily. These are calcium oxalate stones. All he has done for 7 years is lay in his bed and pass kidney stones. He has no life. He can't work or go to school due to this debilitating circumstance. He spends many nights in the hospital for pain control or surgeries to remove the stones he can't pass. Due to this, he has kidney damage, liver damage, colon issues(from taking narcotics to fight the pain-hence diarrhea or severe constipation), esophagus and stomach issues from vomiting all the time from extreme pain, many UTI infections and ureter damage from the surgeries and I worry about cancer due to the amount of radiation he receives from CT scans. Sometimes he gets 10 in a year. All of these things he sees special doctors for.

I have spent 2 years and 3 appeals in court to get him on disability. Because it is kidney stones and a physical pain, they would deny this as a disability. It is unbelievable, but it truly is a disability because it keeps him from performing basic activities. Two years ago, his internal medicine doctor (Dr. Jaspreet Alang) diagnosed Tate with PH 1. Here's the problem:

Tate has been on a medicine called Oxlumno for two years for PH 1. The shot has done what it is supposed to do, which is to decrease his oxalates, therefore diminishing stone formations. Currently, Tate has ZERO oxalates, but is still producing and passing stones at rapid amounts. Not only that, but his stones are becoming larger, requiring more surgeries to remove them.

I feel just as lost as I was in 2017, trying to find answers and solutions to this horrible nightmare. I am sitting here 7 years later still saying "I don't know what to do". February marked the 7th year anniversary of this beast of disease (or whatever it is). We are starting our 8th year of this madness. If there is anything you can do, I would appreciate it very much. A friend told me about your show Diagnosis. I would love to expose this to the masses. I have spent countless hours and resources traveling the country to find doctors to help. I need the doctors who think or want to help to come to me. Tate is truly an anomaly on his own island by himself with this sickness. Any opportunity to find another case like his or just help that we haven't been given would be a God send. Any advice or help you can give is desperately needed. Thank you for any attention you can give to this matter."

If you have any suggestions for John and his family, you can reach him here: John Nicholson, johnpatricknicholson@gmail.com