Meds for high potassium

[Kerri Grey]

I was wondering if anyone of you have used any other treatment other than dialysis to treat high potassium levels as a long term treatment???

Ash has been constantly having high potassium levels and his docs have been using resonium to bring his levels down and that is effective however the docs say this is not a good long term option. I asked Ash's doc if there is anything to treat it with long term other than dialysis and he didnt really give me a straight answer which makes me wonder if perhaps there is no other long term treatrment other than dialysis, so i thought i would ask all the experienced people here.

[Jessica Olivia Frysz]

Exactly what my mom said : Kaxalate has been the drug of choice in my treatment, while being on dialysis. This drug comes in both liquid and powder form. However, the liquid form is quite revolting in taste and smell, which is why I went for the powder form. The powder form is often mixed with some water to take it and it doesn't smell really bad. I often called it "watered down peanut butter." because it does look almost like it. Ask your doctor if Kaxalate would be something you could use, it really does help the potassium levels.

[Cheryl Biermann]

Not yet, but I plan to. Bill had planned to take Joe to college for his freshman year, but his wound still isn't healing, so he had a follow up with the wound specialist that day, but rescheduled for Thursday so he could take Joe. Anyway, he woke up Wed and changed his dressing which had begun bleeding again and looked like more skin had gone bad again. So he dropped Nathan off for dialysis, went to work then, as work is just 10 min. from the hospital, went to Nathan's Neuro Clinic and I took Joe on the college trip. Good thing, Joe and I walked all over, and I don't think Bill would have enjoyed all the walking with crutches! I'll let you know when I get more answers, it's really good because they always give me their reasons why or why not they have done things.

[Colette Ann Frysz]

Yes, my daughter has used kaxalate for years. We use the powder form because it doesn't taste or smell bad. My daughter and I mix it with just enough water to get it down orally. The dose is based on weight.

[Kerri Grey]

Cheryl, did you ask your docs about the resonium that we use??? Since Ash started on Solaris his "eating" has improved. He is showing alot more interest in food but still doesnt reaaly eat too much - he licks peanut butter off sandwhiches sucks on biscuits and loves yoghurt and the juice from chicken noodle soup!!! But it is a huge improvement to him not even putting anything to his mouth. Im glad that Nathan's K is back down again - now to the juggling act to keep it stable...

[Cheryl Biermann]

Wow, Kaexalate through the tube? I don't know why we didn't think of it! By the way, Kerri, Nathan's last potassium was 4.5, finally, so now we'll worry he leak it all out again! He gets a 2K bath during dialysis but he used to get a 3K...if we drop rappidly again, I'm going to ask that he be put back on 3K and maybe skip the oral potassium.

Nathan just started eating, don't worry, when they finally decide to eat it will be such a S L 0 W process, you'll be able to introduce one food at a time, and learn to season it the way they like it. At least that's how its been with Nathan. He has a goal to remove the tube by December. I'm not so sure I want it completely gone yet; if we do transplant/soliris, I'd like to have the option to use it if need be.

[Kerri Grey]

Thanks Wendy...You are right it is so hard on them!!! Im scared to death that his potassium levels are going to lead us back to dialysis...

[Wendy Flinn]

Hey! Tristan is peg fed too and uses similac pm 60/40 which is a renal formula. We pretreat it with kaexalate powder. So when you mix the formula you mix the kaexalate power with it and take out the extra potassium that you don't want him to eat. I think we take out an extra 60 percent. It depends on how much you put in when you mix it. The dietician does the formula for how many grams of powder you need. That's how we keep Tristan's K down. He still hovers in the high normal range 4.8-5. Tristan doesn't eat hardly anything either. He'll drink some milk but he can only have 9-12 oz of low fat milk a day and he has to avoid high potassium foods too. Our boys are a lot alike aren't they? Tristan takes norvasc for his bp. If Tristan gets too high they'll give him kaexalate straight in his tube and then he poops it all out. We havent' had to do that since he was hospitalized and he's been on the same formula prescription since we found out he retains his K. Our poor kids when they get old enough to want to eat and out grow their anorexic behavior they aren't going to get to eat anything they like. It's going to be chicken and white bread or crackers every night! I am just kidding :) There's like twenty foods they can have :) Hope this helps.

[Kerri Grey]

Ash is peg fed and uses a formula called kindergen which is low potassium, phosphate and protein he orally eats very little and i know that tomatos bananas potatos pumpkin etc are not good for high potassium levels. The only meds he is on at the moment for blood pressure are lisinopril 2.5mg daily as his creatinine and BP and all that has been good our biggest issue is his potassium and Hb.

[Grace]

Certain medications can cause increased or decreased levels of potassium, including different classes of blood pressure medications. I don't know if Ash is on any medications that could be contributing, but it's worth asking your doctor (if you haven't already).

[Donna Kolp]

Hi Kerri,
I am really not sure about a long term med for high potassium, but how is Ash's diet? With Jonathan we had the opposite issue as when he went on Hemo I couldn't give him enough potassium. They eventually changed his script to a 2 K bath. When Jonathan was on PD, same issue. I never restricted his potassium.
You would be surprised what potassium is in, and how much!
Donna