TessaKrista Posted March 23, 2012 Report Posted March 23, 2012 My ds9 started off in early Feb telling me that he had a very sore throat and couldn't swallow food. I went to the local medical clinic, and asked got one week of antibiotics for strep, with no swab. My husband had a severe cough and a severe sore throat too, but did not get treated. Then 3 days into azith treatment, my ds had severe abdominal pain, and had difficutly urinating. Then he wanted to urinate all the time, every 5 minutes, believing that his bladder was going to burst. I stopped the abx after 3 days, worried that the high dose was causing something. He had 3 urine tests, one at a children's hospital, one at the local hospital, and one done through a lab. All three said that he had enteroccocus, and needed antibiotics like amoxil or something else. Since he reacted to amoxil in the past with a rash, I went to his pediatrician for advise. He said that he wasn't going to prescribe anything, because my son didn't have a fever. But then all of this ocd stuff has set in. It is like my son isn't the same at all! He now urinates in his pants, when he believes that he can't get to a washroom, because he doesn't want his bladder to burst. He worries about dying, and little things, like ants crawling in his ears, or swallowing something that might kill him like a battery or something. Very very different kid. Plus, he says that he hates this world, because he felt so dejected that he didn't get a kitten, bc I noticed that at the pet store, he was having a full fledged allergic reaction to the kitten that he had chosen to bring home (red swollen eye, itchy eye, itchy face, red bloches on the face where his hand touched his face after holding the cat). That was the unbelievable worse night... he cried and cried and cried for 20 minutes in the parking lot of the mall, saying that he hated me for not buying the kitten, and he hated himself for being allergic to kittens. It was so sad. I hugged him and tried to comfort him, but it really wasn't easy. He kept saying "I didn't ask to be born into this world." I have been able to get some azithromycin for him, and although the tics have improved somewhat, the ocd has not. I will do some advil or motrin. My question: can a uti cause pandas or pans symptoms? Dr. T on a podcast that I just watched said that pandas/pans can be brought out by something that causes a fever, bc it plays with the immune system. So why not a uti I am wondering? Also, the enteroccoccus...that is bizare...since it is poop. So, perhaps when the tip of ds9's penis was feeling raw, and he used the vaseline that he uses when his butt is raw....perhaps some enteroccocus bacteria was there. I am worried bc the uti was not treated. Then the ped asked for another uti test, and this time, the hospital asked my son to wipe his penis first with this swab thing, which he didn't do on the other 3 occasions. Well, the last test was negative. I told my son the good news, and told him he was all better. For two days he peed as he normally would have, and then reverted to peeing in his pants, fearful that his bladder would burst. He has this sensation that he has to pee immediately after he just went pee. That is how he explains it. Any thoughts?
Tamistwins Posted March 23, 2012 Report Posted March 23, 2012 Feeling the urge to urinate frequently was one of the first symptoms that my daughter presented with or at least I thought at the time. This is definitely a pandas symptom. It is an urge or a feeling that he needs to go yet, many times does not need to go. Before I knew what we were deali g with I had taken my daughter to a urologist. However, the symptom subsided with abx. This is a symptom that seems to return in a flair. My daughter was so young at the time an she would cry, scream, tantrum she needed to go after we left the house web though he just went. I used to think she just liked visiting dirty public restrooms. Have you asked for any strep blood work to be done to see strep titers? Where do you live you should see a panda specialist sooner than later.
fightingmom Posted March 23, 2012 Report Posted March 23, 2012 Yes, this happens to my son sometimes too. He frequently urinates and sometimes in the middle of the night he will wake up to go 2-3 times. I do notice it is when his other symptoms are amping up.
MomWithOCDSon Posted March 23, 2012 Report Posted March 23, 2012 First of all, with respect to "can a UTI cause PANDAS/PANS?," I don't know that there's anything in the literature specific to that type of infection triggering PANDAS/PANS, but certainly if a microbe is involved, it would seem the possibility is there for a child who is predisposed. Peri-anal strep, I know, can set of PANDAS, as can strep in the gut, so it doesn't seem impossible that an infection in the urinary tract may not do the same. I'll also note that my 75-year-old dad has now had two UTIs that set him in a mental/behavioral tailspin. He's in a wheelchair and has little feeling from the waist down, so he didn't experience any pain with the infection. Rather, the first sign that he was ill (the odd behaviors preceded the fever, even) was when he began to operate his electric wheelchair irratically and ask nonsense questions of my mom. The doctor at the ER said that behavioral responses to UTIs in senior citizens are well known and documented. So why couldn't it manifest similarly in a non-senior-citizen? That being said, urinary frequency and a concern that he has to go even immediately after having just gone sounds like a PANDAS OCD behavior to me; the brain gets stuck in that "loop," and rationality goes out the window. There were points at which my DS would pee, crawl into bed for the night, and then get up immediately to "go pee" again, only to have nothing come out (of course). But then he'd cry and be in all sorts of distress about going back to bed and falling asleep because he just knew he was going to pee in his bed without meaning to, the feeling that he needed to go -- still -- was so strong. This faded, along with many of the most prevalent behaviors, with treatment (abx). Melatonin at night seems to have helped quiet the issue, as well. I would get your DS some PANDAS treatment ASAP!
hugs2day Posted March 23, 2012 Report Posted March 23, 2012 The urinary frequency and fears your son is experiencing is exactly my son . My son told me if I didn't get him a dog he would die. He thought when I used pledge to dust that it would get into his mouth and poison him. He questions everything that touches him, his food, his fork, etc. He was becoming very ill and that is when I told the Neuro we need to do something different because the Azithro was not doing the job. He switched to Penn VK and went into remission within 3 days. My husband and I were amazed and relieved and my son told me he got his life back. He knew too. Did you get the list of doctors I sent you? I tried to send you a PM but got message you cannot receive any new messages.
kimballot Posted March 23, 2012 Report Posted March 23, 2012 I agree with the others that your son could be having a PANDAS exacerbation that started with his throat and that alone can cause urinary frequency and OCD.... plus a verified UTI certainly could trigger an exacerbation. I also want to point out that you may have some strep or mycoplasma floating around your house if your DH was also ill recently.
TessaKrista Posted March 23, 2012 Author Report Posted March 23, 2012 The urinary frequency and fears your son is experiencing is exactly my son . My son told me if I didn't get him a dog he would die. He thought when I used pledge to dust that it would get into his mouth and poison him. He questions everything that touches him, his food, his fork, etc. He was becoming very ill and that is when I told the Neuro we need to do something different because the Azithro was not doing the job. He switched to Penn VK and went into remission within 3 days. My husband and I were amazed and relieved and my son told me he got his life back. He knew too. Did you get the list of doctors I sent you? I tried to send you a PM but got message you cannot receive any new messages. Yes thanks. I got the list of doctors. I appreciate it so much. I just started giving him advil, and he is finding that the fears are decreasing. This is his 7th day on azith, although the first 5 were low doses each time. Now he is taking 7 ml, which is not high, but it is not low like 3.5 that he was taking last week. It hasn't been easy getting abx though. I want to talk to one of the doctors on your list, and consult with Dr. T. Thanks!
TessaKrista Posted March 23, 2012 Author Report Posted March 23, 2012 I agree with the others that your son could be having a PANDAS exacerbation that started with his throat and that alone can cause urinary frequency and OCD.... plus a verified UTI certainly could trigger an exacerbation. I also want to point out that you may have some strep or mycoplasma floating around your house if your DH was also ill recently. Yes DH had a severe thing going on just before ds did. DH had a severe sore throat, felt run down, was coughing big time, and then ds started up with tics and a sore throat that scared him, into believing that he couldn't swallow. It started that way. DH decided that it takes too long to get an appointment with his doctor, and didn't end up going to the walk in clinic that I suggested, and just left it at that. That was early February or late Jan. I am wondering if it makes sense to ask DH to request strep titers from his doctor to see if he had exposure. It seems that he could have had pneumonia plus strep. I don't know. DH also has sacoidosis, that has been around since 1990.
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