CKD, high creatinine and... seizures?

Posted by santrealyste @santrealyste, Oct 24, 2023

Hi. Sorry this is gonna be long. This is for my dad.
Dad was diagnosed with CKD last April 2021. We've been controlling it by changing his diet as well as with prescribed meds.
Now, we've noticed that he has these maybe 15-30sec "attacks". It used to happen a few times a day, but now it's only once in a while. I've noticed that it seems to match with when he has either high creatinine and/or high potassium. Sadly I've no way to confirm the connection as we only do his blood labs every 2-3months.
The "attacks", I think they resemble simple partial seizures? He tends to lose focus, his hand either closes and opens or grips very hard, sometimes he chews. He knows you're talking to him but he can't seem to understand (just "hmm?") and he purposely breathes deep. He's aware of the deep breathing but not aware of his other actions.
I've seen a few google results about uremic seizures, but he had normal BUN and uric acid levels in his last results and he's having a few attacks recently. But also his potassium was 5.12 (normal 3.6-5.5) and creatinine is 1.75 (normal 0.5-1.3).
I'm honestly not very happy with our nephrologist for the way she dismisses everything as dehydration (she keeps pushing for dad to drink an electrolyte packet 3x/day, even though we've explained that it makes his legs cramp up at night, and his attacks happen more often).
I'm hoping that someone who maybe has experienced the same, suggest ideas on what's happening? Please let me know what you had to do to control/stop it. Thank you so much.

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I would not think that having CKD would cause seizures but there could be a secondary relationsip. It could be an electrolyte imbalance or medication issues. Your dad should be seen, in my opinion by a neurologist and/or cardiologist for any problems with seizures. It sounds like he is having mini strokes of some kind, perhaps Cerebrovascular disease which is related to CKD. If it were me, I would strongly consider seeing a neurologist immediately. Mayo neurologists are the best.

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@santrealyste Welcome to Mayo Clinic Connect. This is awesome to read, how you are advocating for your dad! You didn't mention how old he is, nor if there are any other co-health situations, both of which can be factors in what he is experiencing. While our kidneys are miracle machines and workhorses [just my humble opinion!] they do so much to help keep our whole system regulated. As @collegeprof mentioned, there can be contributing factors. Indeed, electrolyte unbalances, or medication interaction can be an issue. Even the time of day, activities done, and of course hydration levels can play a part.

Might I suggest you consult with your dad's primary care doctor, and get a full physical work-up? Rule out any other issue. Maybe there is a simple fix, like changing what medications are taken together/time of day. Spacing out fluid intake/modifying his diet more. Is this doable?
Ginger

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I've not had these issues, but while his levels are slightly elevated I'd question why that would be the reason. Especially if his Dr doesn't think so either. Dehydration is a real problem to balance with kidney function issues and can cause leg cramps etc. When my calcium levels are very low I experience cramps, dizziness, etc. So lots can impact things. Your neohrologist may not be the best person to rely on solely for this, especially since you have lost confidence in them, you could consider talking to his primary about it, for a total other viewpoint, running all the normal tests and perhaps even asking for a referral to a neurologist to explore other causes. You also might try filming his responses during these so the MD can see
Thank you for being such a great advocate for your father. I know it must be frustrating , but You are doing good. Hang in there

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thanks everyone for the advise. i think i will follow you and check with both cardio and neuro.
i forgot to mention that my dad is also Diabetes T2 for... maybe 20yrs now. his CKD is most likely a comorbidity. i guess this also further opens the possibility of heart and/or neuro problems.
hoping this can still be stopped and/or hindered. i know he's troubled with it though maybe still a bit in denial (or maybe just because he's not fully aware of how he is during such events). thank you again < 3

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Have this forum is great. I have CKD and have been in and out if the hospital for high creatinine and low potassium and my other levels have been elevated (platelets etc.) calcium also low as is my Co2. I have been receiving hydration and have taken potassium but it is an on going problem. I am also on Farxiga. Any suggestions?

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@santrealyste

thanks everyone for the advise. i think i will follow you and check with both cardio and neuro.
i forgot to mention that my dad is also Diabetes T2 for... maybe 20yrs now. his CKD is most likely a comorbidity. i guess this also further opens the possibility of heart and/or neuro problems.
hoping this can still be stopped and/or hindered. i know he's troubled with it though maybe still a bit in denial (or maybe just because he's not fully aware of how he is during such events). thank you again < 3

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@santrealyste Diabetes is one of the main causes for chronic kidney disease, along with uncontrolled high blood pressure.

What we most often hear, is that getting the underlying health issue in check and controlled, will do a lot to help the kidney concern. Yes, having his heart and neuro problems looked into will be a great start to a better health journey! I have always found it so amazing how connected our different bodily systems are, and how one can affect another one without us barely knowing it!

I hope you will let us know how else we can assist you, and let us know what your dad decides to do going forward, please?
Ginger

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