pome Posted April 28, 2014 Report Share Posted April 28, 2014 My daughter is 4 years old, and all of a sudden she started saying she was still 'wet' after urinating. She would wipe over, and over, and over. At other times, she would think she had to go pee again and again, even though she had just fully relieved herself. She comes home from pre-school in changed underwear and pants because she thinks she wet herself during the day, but we don't think she actually did. She was potty trained with no problems at the age of 2. This is the first time she's had any problems like this. 2 months ago, she complained all the time about an upset stomach. She hasn't complained about those though recently. Her school has had a few outbreaks of 'strep', and she was tested back in December 2013 when we took her to the doctor for the constant upset stomach. (Dr. couldn't figure out what it was so just said to start removing certain food items, one at a time.). Our daughter has no food allergies, though her doctor said she is prone to hayfever allergies (my whole family has them!), and she has had many a runny noses, and coughing, colds, etc.... but what I thought is the norm for a pre-school child. She did have one bad ear/eye infection several years ago. She is distraught with her need to constantly wipe herself or going pee over and over and says "i'm so sad mommy, why do i have to wipe again and again???" "why do i have to pee when i just went pee?" She realizes it doesn't feel right and verablizes how sad it makes her. She doesn't do this all day, but when she DOES have to go pee, it is quite an event, with her going back to the toilet over and over and over again. I can't figure out if it is PANDAS or not. Am going to the doctor tomorrow. If it is or we can't figure it out right away, should I suggest the antibiotics so we can try to stop this in it's tracks? Should I request more than just the typical 'swab' test they have done in the past for strep? She has yet to be diagnosed with strep event hough she's been tested for it a few times. Thank you Link to comment Share on other sites More sharing options...
beeskneesmommy Posted April 29, 2014 Report Share Posted April 29, 2014 Frequent urination is a symptom of PANDAS. Yes, ask for a swab but also request that it is sent to be cultured if it comes out negative. Here are links to a couple of reliable sites: http://webpediatrics.com/pandas.html http://pandasnetwork.org/ Link to comment Share on other sites More sharing options...
3bmom Posted April 29, 2014 Report Share Posted April 29, 2014 Our only positive swab was onset. At the west coast symposium they mentioned sinus, urethra and anus as areas with strep. After reading material I would try antibiotics and chart improvement. Hugs for being so quick on this. Link to comment Share on other sites More sharing options...
pome Posted April 29, 2014 Author Report Share Posted April 29, 2014 Thank you both so much, I will make sure to discuss the above with the doctors. She had another bad day at school, sitting on toilet, change of clothes, etc. She is distraught. Link to comment Share on other sites More sharing options...
MaryAW Posted April 29, 2014 Report Share Posted April 29, 2014 Try calling the NIMH and asking them what to do to prevent the onset of PANDAS, ask what tests your DD should have. This happened to my daughter one year prior to onset of PANS, not PANDAS - no strep for her. Dr. Swedo said at the Mass. Q & A a few weeks ago that frequent urination was a big indicator for PANDAS (but remember my DD was PANS). It went away for my DD but then she started getting nighttime fears, then some repetitive behavior, then full on PANS. We did not know about PANS/PANDAS. If your child does have the sudden onset of other symptoms, get her antibiotics immediately! Link to comment Share on other sites More sharing options...
searching_for_help Posted April 29, 2014 Report Share Posted April 29, 2014 Overnight urinary frequency and some incontinence was our first big flag. Sadly, the multitude of docs didn't know anything about PANDAS/PANS, so they just ran tests to assure nothing physical was going on. She was 9 when it started. Layered in over the years since then: extreme anxiety, OCD, intrusive thoughts, eating disorder with exercise compulsion, etc. DON'T WAIT to get this under control. Find a doc who's willing to treat for PANDAS/PANS. Our dd is turning 22 soon, and this has not been a picnic. I don't want anyone else to EVER have to go through this. I just wish I knew back when she was 9 what the urinary thing was about, and maybe we could have avoided this nightmare. The best of luck to you and your family. It's so good that you are aware, and don't let any doc make you think it's all in her head and that therapy will help without treatment. I insisted over and over that the urinary thing might be connected to the other problems, but none of the docs/therapists/ED clinics, etc. would listen to me. Link to comment Share on other sites More sharing options...
JenniferG Posted April 29, 2014 Report Share Posted April 29, 2014 Frequent wiping and feeling still wet is one if the only signs of my dd10 having strep throat. She was diagnosed with PANDAS 5 years ago. Link to comment Share on other sites More sharing options...
rowingmom Posted April 30, 2014 Report Share Posted April 30, 2014 Frequent urination was one of DD's PANS symptoms as well. In her case PANS was caused by bartonella infection. Her teachers were quite insistant that she had UTIs, but results always returned negative. Link to comment Share on other sites More sharing options...
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