kmacdonald34 Posted January 4, 2015 Report Share Posted January 4, 2015 I am trying to figure if my daughter has PANS. She was hospitalized at the end of August with a respiratory infection that they said was atypical pneumonia. After this she started to have OCD flares. SOmetimes it would be bad, extremely worried about germs, itchy her skin like crazy, crying that she doesnt know how to stop, using lots of hand sanitizer and washing hands. Then it would get better. I noticed that when she had some respiratory thing going on, her symptoms were worse but just thought she had some OCD. On Christmas Eve she ended at urgent care with another respiratory infection. She went home on prednisone and the next day had severe onset OCD. Lots of crying/screaming, using hand sanitizer till her hands bled, going to the bathroom a lot, wiping obsessively because she didn't want to have pee drips, changing her clothes repeatedly because she thought she was wet and she wasn't, not sitting on certain things, holding her hands together cause she didn't want to touch anything, nightmares and screaming at night worried about being tired. We could not leave the house for a couple days because it was so bad. After a few days, it got better but her OCD is still here and worse than before. Strep test were negative. I plan to make an appt tomorrow with a dr. that specializes in PANS (Dr. Jolan Walter at Mass General is who I want to see if anyone has experience). Trying to see what people with PANS/PANDAS experience think. Does this sound like PANS? Thanks for any insight. This is all so new and overwhelming to me. Link to comment Share on other sites More sharing options...
jan251 Posted January 4, 2015 Report Share Posted January 4, 2015 (edited) I'm relatively new to this too, but sure, that sounds like it to me. Rather than strep being the culprit, perhaps it might be mycoplasma pneumonia, considering the respiratory infection issues. Was she on an antibiotic with the atypical pneumonia? Two of my kids had atypical pneumonia a few years ago, as in, they were hospitalized and the doctors couldn't quite decide based on the x-ray whether it was viral, bacterial or mycoplasma, or more likely some combination, so they went with combination antibiotics. Looking back, I feel sure mycoplasma was in the mix, for a number of reasons. Edited January 4, 2015 by jan251 Link to comment Share on other sites More sharing options...
rowingmom Posted January 4, 2015 Report Share Posted January 4, 2015 (edited) At least one parent here has found PANS exacerbations with mycoplasma infection. There were underlying difficulties with lyme and coinfections as well. Check hopeny's archived posts for more information. Edited January 4, 2015 by rowingmom Link to comment Share on other sites More sharing options...
kmacdonald34 Posted January 4, 2015 Author Report Share Posted January 4, 2015 She was on antibiotics for 5 days when she was in the hospital. There was no symptoms while she was in the hospital but I noticed an increase after. She was on no antibiotics after this massive onset of symptoms. She has just been using her inhalers to help the respiratory issues. Will check the archives for hopeny posts. Thanks, Link to comment Share on other sites More sharing options...
pr40 Posted January 4, 2015 Report Share Posted January 4, 2015 please, tell us how the apt with Jolan Walters goes. i do agree with previous posts, your kid seems to have a PANS like reaction. Link to comment Share on other sites More sharing options...
BeeRae22 Posted January 5, 2015 Report Share Posted January 5, 2015 The only thing my dd has tested positive for so far (it's been 1 year now) is mycoplasma pneumonia. She had "pneumonia" 2 summers before onset, and a history of long lasting and frequent, troublesome coughing, but never strep or anything as far as we're aware. The one time she was actually x-rayed for pneumonia, her pedi told me "her lungs sound clear" but I asked for the X-ray anyway because her cough just seemed too intense to just be a cold. I now wonder how many other times it was actually pneumonia and not just a cold..... Ironically, since Pans onset guess what? No coughing at all for the past year. Her IGG was finally in range approx 7 months into treatment. IGM is still over 5 (should be <.9 ). We suspect Bartonella as well, but haven't seen a positive test.... Yet. Link to comment Share on other sites More sharing options...
BeeRae22 Posted January 5, 2015 Report Share Posted January 5, 2015 And yes, please tell us about your appointment. At one time I was hoping to have dd see Kyle Williams at Mass Gen, I believe he is heading the program there? Link to comment Share on other sites More sharing options...
mmiglio Posted May 22, 2015 Report Share Posted May 22, 2015 I am trying to figure if my daughter has PANS. She was hospitalized at the end of August with a respiratory infection that they said was atypical pneumonia. After this she started to have OCD flares. SOmetimes it would be bad, extremely worried about germs, itchy her skin like crazy, crying that she doesnt know how to stop, using lots of hand sanitizer and washing hands. Then it would get better. I noticed that when she had some respiratory thing going on, her symptoms were worse but just thought she had some OCD. On Christmas Eve she ended at urgent care with another respiratory infection. She went home on prednisone and the next day had severe onset OCD. Lots of crying/screaming, using hand sanitizer till her hands bled, going to the bathroom a lot, wiping obsessively because she didn't want to have pee drips, changing her clothes repeatedly because she thought she was wet and she wasn't, not sitting on certain things, holding her hands together cause she didn't want to touch anything, nightmares and screaming at night worried about being tired. We could not leave the house for a couple days because it was so bad. After a few days, it got better but her OCD is still here and worse than before. Strep test were negative. I plan to make an appt tomorrow with a dr. that specializes in PANS (Dr. Jolan Walter at Mass General is who I want to see if anyone has experience). Trying to see what people with PANS/PANDAS experience think. Does this sound like PANS? Thanks for any insight. This is all so new and overwhelming to me. I'm curious to hear what you have found out here. My daughter has been diagnosed with PANDAS with high strep titers, and even though her mycoplasma pneumonia numbers are very high, they want to treat her for Barbesia. I don't want to go down the Mepron route just yet. Wondering if you had any luck treating the pneumonia or got a medical opinion. Link to comment Share on other sites More sharing options...
mmiglio Posted May 22, 2015 Report Share Posted May 22, 2015 I just read through some of your other posts and realized you also responded very kindly to mine yesterday. I am glad to hear you are in with a good doctor and are getting what seems to be good help. Link to comment Share on other sites More sharing options...
kmacdonald34 Posted May 22, 2015 Author Report Share Posted May 22, 2015 At this point we are still not 100% sure of her trigger. However, the infectious disease doctor we see thinks it is strep based on how she reacted so well to the amoxicillin. He just thinks we did not catch the levels in the blood. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now