Tagged: Acute Pandysautonomia
May 17, 2017 at 2:43 am #112706
My son is 7 years old 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 was hospitalized and treated with intravenous immunoglobulin. His condition has been stabilized and was released from the hospital on March 27, 2017.
The question I would like to consult with you is about his urinary retention problem. He had the Foley Catheter since Feb 21. Despite 6 attempts in 3 months of removing the catheter, he is still not able to urinate by himself and needs to put the catheter back on. Doctors here told us that the only thing we can do is to wait until the neuro healed. My questions are (1) is it normal to have such a long urinary retention problem (about 3 months) with Acute pandysautonomia? (2) Is there any procedure/medication that can help with this condition? Thank you.May 17, 2017 at 11:55 pm #112713
Acute pandysautonomia is considered an uncommon variant of GBS. More info about it here:
I only have experience with GBS as an adult. Since I initially lost bladder control they used a catheter. I had it for several months. My doctor was concerned about infections and wanted me to be able to do without it. That took 4-6 weeks before I was able to stay without it.
Perhaps taking vitamin B6 + Magnesium would help with fluid retention. A drug such as Lasix may be needed to help get things flowing again.
A young boy’s body is still growing and maturing. It may not be retention as much as it could be related to age. He may need extra time to adjust to the change, but I don’t know, it’s just my opinion.
Maybe another forum member has more first hand knowledge.May 19, 2017 at 1:28 am #112719
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,
MikeApril 2, 2018 at 2:14 am #114075
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.
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