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rollercoaster ride

kalebsmommy
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Wow what a rollercoaster ride kidney disease is! This May we took our son in for a kindergarten physical where they discovered protein in his urine, he had a biopsy in July, and now a peritoneal catheter was put in onTuesday. This all seems so quick. I thought we might be checking his protein every day and that is would be a lsow progression, but I didn't expect it to get this far this quick. My son was on prednisone, then changed to cyclosporine and then his BUN went up to 127. How many of you have faced a quick progression of this disease? How did you handle dialysis with a child (my son is 5)?
Thanks

Explore topics in this discussion:

Dialysis Cyclosporine Nephrotic syndrome Prednisone

1 reply

SarahAnne

The sooner you are able to get him to swallow the large pills the easier it will be for you both. My parents came up with the best way to take meds... Kids tend to swallow capsules better than pressed pills that stick to their mouth and tongue. The calcium acetate is a capsule that you take with all food. Once he can swallow those you can buy empty capsules from a health food store and we just pack those full with as much meds that will fit. The Prograf are little capsules but we stick those in one capsule for the appearance of less medication. I will admitt the journey to get my daughter to take meds was horrible. The liquid meds are the worst and she grew tired of the flavors(i.e. cherry, grape, straw.), and they do not mask the meds taste. My course of action to get her to swallow her large pills was no picnic. I finally was in tears telling her that she wouldn't live without the meds.
She started prednisone in Feb 2006 by August 2006 she was taking all meds by pill form. In October 2006 my parents showed me the empty gel capsules and we have been doing great with medication. By the way she was only 5 going on 6 years old when we made her swallow large pills, so best of luck, it will make it alot easier for eveyone. Also, her kidneys were removed in February 2007 and we recieved a transplant in August 2009. The amount of meds only increased as the progression of treatment advanced to more indepth care. (I.E. the diagnosis of nephrotic syndrome> little meds, Kidney Removal> increased meds by double, Transplant> now taking 2 dozen pills a day but with empty capsules it cuts the amount of swallows down to about 6 or 7 capsules per day).

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