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bootsiediabetic1
@bootsiediabeitc1

Posts: 4
Joined: Jan 25, 2018

Seizures and calciphylaxis

Posted by @bootsiediabeitc1, Tue, Feb 6 8:48am

My husband who has been on hemo dialysis for 7 years was diagnosed with calciphlaxes in earlier Dec 2017. He was being treated through dialysis with sodium theosulfate. The wound grew which is on his right calf. His pain was excruciating. He was admitted into hospital. He started hallucinating with the pain meds he was given. He then started having seizures. He was given a CT Scan and MRI. Showed no signs of brain clots or brain cancer. He is now on 4 different kinds of anti-seizure medication. His neurologist said he’s still having disturbances in his brain. Any suggestions on what can doctors do next? He’s sleeping almost all the time.

REPLY

Hi @bootsiediabeitc1, welcome to Connect.
I’m inviting fellow members @specialkt @dawn_giacabazi @douglasd @predictable and @rosemarya into this discussion about kidney disease, calciphylaxis and seizures in the hopes that they may have some insights and help find the questions to ask the doctors.

@bootsiediabeitc1, I do not have any knowledge or experience with the conditions that your husband is experiencing. I am sorry that he and you are going through these complications. I was only on dialysis for acute kidney failure just prior to transplant.

I am a big believer in asking questions and seeking information. So – I want to ask you if your nephrologist / neurologist are communicating about your husband’s treatment? Have you considered a second opinion?

I had to look up kidney disease and calciphylaxis to learn what it was. Here is what I found, maybe there is some information that might be helpful.
https://www.mayoclinic.org/diseases-conditions/calciphylaxis/symptoms-causes/syc-20370559

Rosemary

@rosemarya

@bootsiediabeitc1, I do not have any knowledge or experience with the conditions that your husband is experiencing. I am sorry that he and you are going through these complications. I was only on dialysis for acute kidney failure just prior to transplant.

I am a big believer in asking questions and seeking information. So – I want to ask you if your nephrologist / neurologist are communicating about your husband’s treatment? Have you considered a second opinion?

I had to look up kidney disease and calciphylaxis to learn what it was. Here is what I found, maybe there is some information that might be helpful.
https://www.mayoclinic.org/diseases-conditions/calciphylaxis/symptoms-causes/syc-20370559

Rosemary

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Thank you @rosemarya. Me and my family have learned to ask questions and seek answers throughout this process. While some staff is knowledgeable and communicative, others are not. Luckily my son and daughter in law are both nurses and are able to recommend certain procedures. I am just glad they are here to recommend ideas that the hospital staff has been overlooking. Currently my husband’s leg infection is not the highest priority due to the latest introduction of seizures. Thanks to 4 different anti-seizure medications, the seizures have stopped. They have been weaning him off certain ones and lowering the dosage, however it has been 5 days of him strictly sleeping. Luckily EEG shows no head trauma and my husband is making more head movement each day, but still waiting for him to wake up.
We will keep asking questions. My family and I appreciate your valuable input.

Patty

@rosemarya

@bootsiediabeitc1, I do not have any knowledge or experience with the conditions that your husband is experiencing. I am sorry that he and you are going through these complications. I was only on dialysis for acute kidney failure just prior to transplant.

I am a big believer in asking questions and seeking information. So – I want to ask you if your nephrologist / neurologist are communicating about your husband’s treatment? Have you considered a second opinion?

I had to look up kidney disease and calciphylaxis to learn what it was. Here is what I found, maybe there is some information that might be helpful.
https://www.mayoclinic.org/diseases-conditions/calciphylaxis/symptoms-causes/syc-20370559

Rosemary

Jump to this post

@bootsiediabeitc1
Patty, I hope that the positive news continues for your husband.

I want to share something about my experience that might be helpful in the future: When I was in critical condition, I was not aware of what was happening. I only was aware when I was moved or if I heard someone calling my name. Afterwards, I struggled with that gap in my memory and my husband and family had to fill me in on what had occurred. I tell you this because I am detail person, and I was really frustrated (almost angry) when I could not get the details from them ie the treatment and events, the days, the times, the people involved. I am only mentioning this so that you will be prepared if he wants you to get him up-to-date on what happened. It could be now or later or ongoing. It was quite frustrating for me and they did not really understand my need to ask so many questions. It was and still painful for them because of the severity of my situation at that time.

Rosemary

My husband also is very detailed. Since he has been in the hospital I have kept a detailed journal which got to be too much. So now i just text my husband and talk into my phone giving details right when it happens.Thank you for your comments. Patty

Hello @bootsiediabeitc1. I am glad that @colleenyoung called on me to look in on your family’s situation. People such as your husband capture my interest and give me new chances to be helpful to Connect members. I have been under treatment for kidney problems for several years, but I have no personal experience with dialysis or the symptoms your husband has encountered, with perhaps one exception. Calcium has been a problem for me, and as a result, my nephrologist and I take special care to keep an eye on it — and on my Parathyroid gland, which controls the amount of calcium in my system. I have regular lab tests to track Calcium, Parathyroid hormone, as well as Potassium and Anticoagulant index. Perhaps your husband would benefit from knowing whether his Parathyroid gland is allowing calcium to rise to excess levels. That could cause sores such as your husband has. I’m glad to see his treatment with Sodium Thiosulfate, a common therapy for calciphylaxis. I am surprised to hear of his neurological problems; I have no insights or experience with those yet, so I will cast around for more information in hopes that I find something helpful. Meantime, I’ll keep in touch and be available any time to “talk” by these means or any other. I hope you know that you can send any of us a private message, using the envelope icon at the top of this page and the @xxxxxxx identification of the person you’re addressing. Martin

Thank you for your information and most certainly will bring it up with his doctors. Patty

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