mchang18

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  • April 2, 2018 at 2:14 am

    I wrote to the forum about 1 year ago as my son was 7 years old at that time and was diagnosed with Acute pandysautonomia on Feb 21, 2017 with symptoms of urinary retention, blurred vision with enlarged pupillary, gastrointestinal problems, and weakness. He has recovered well. The only remaining issue is the urinary retention problem. He has been using intermittent self-catheterization 3 to 4 times a day to help empty his bladder since June 2017. His condition has improved to the point that the remaining urine from each catheterization was about 40 cc (from greater than 100 cc originally). I am wondering if anyone knows of the criteria or knows where I can find information when we can stop the intermittent self-catheterization for him. He is 8.5 years old now. Thank you in advance for your help.

    May 19, 2017 at 1:28 am

    Hi Jim,
    Thank you very much for the information. May I ask a couple of follow up questions? You mentioned that it took you 4-6 weeks for you to get rid of the catheter after several months of having GBS. Do you recall what symptoms/indications/tests you had at that time that your doctor thought you are ready to try without catheter? Also, may I ask if there is any therapy, bladder training, or medication that the doctor gave you during the 4-6 week period to help with the process?
    I also read about the intermittent catheters vs Foley Catheter. Currently, my kid has the Foley Catheter and needs to go to hospital every 3-week to have the catheter replaced. Does anyone in the forum have experience with intermittent catheters for kid?
    Thanks and Regards,
    Mike