Care Guide Mother of 11-year old diagnosed with ec
Who I am
My 11-year old son was diagnosed with Eosinophilic Cystitis in July 2018. He was initially prescribed a daily dose of Cetirizine 10mg. After two weeks and no decrease in pain levels in his bladder and kidneys. The nephrologist prescribed 60mg of Prednisone daily. The dose was instructed to be given every 12 hours in 30 mg dose. After a month, there was only a slight decrease in pain but due to the Prednisone he now has sharp intermittent spiked pain in his heart and kidneys. The pain level is never below a 4 on a pain scale of 1-10. (the most severe being a 10).
After six weeks, the nephrologist instructed me to start to decrease the amount of Prednisone weekly by 10mg. Instructed to administer entire amount in the morning daily. Example: 1st week 60mg - 2nd week 50mg - 3rd week 40mg. I inquired if it would not be better if we gave him 10mg 6 times a day, the Nephrologist stated there is no difference. I guess she has never resided in a home with a 11-year old that has been given 60mg of Prednisone all at once. Roller coasters are mild compared to the emotional whirlwind this drug causes.
My experience, DO NOT administer a child 60mg of Prednisone all at once. His emotional stability was shattered, he is sleep deprived as he can only sleep for a maximum of 4 hours without waking and by the end of the 2nd week at 50mg his pain had increased.
What I can help
Conditions: Eosinophilic cystitis
Monthly rate: $10.00
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