Monica_in_Switzerland Posted January 19, 2019 Share Posted January 19, 2019 Hi all, A good friend is going through what appears to be a major PANS crisis with her 8yo dd. The dd had what appeared to be a mild flu, and about a week or so later, had a day where her behavior very rapidly (within hours) deteriorated to severe OCD symptoms, irrational fears, full regression in toilet use, feelings that she is not herself, has been taken over, etc. This behavior has shown virtually no improvement, though there are some ups and downs in the severity of the OCD. It's been going on for about 10-14 days now, can't remember exactly. Her pediatrician had never heard of PANS/PANDAS, wanted to refer to psych. Family doc just finally prescribed 5 days of antibiotics (Zithromax). Local and semi-local PANDAS experts are all booked for the next 4-8 weeks. Meanwhile, the entire family is in total crisis. Mom is dropping her school classes she was taking, DD cannot go to school and is barely functioning at home, dad is being called home from work because between the dd who is clearly very ill and her little sister, mom needs help. Family is located in Ohio, if anyone knows any local resources. If you have gone through severe PANS/PANDAS, can you give any advice here??? Thank you! 1 Quote Link to comment Share on other sites More sharing options...
ksr5377 Posted January 19, 2019 Share Posted January 19, 2019 Dr. Carine in Columbus, OH http://www.drcarine.com/ 1 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted January 19, 2019 Author Share Posted January 19, 2019 32 minutes ago, ksr5377 said: Dr. Carine in Columbus, OH http://www.drcarine.com/ Thank you for passing this along! Quote Link to comment Share on other sites More sharing options...
Noreen Claire Posted January 19, 2019 Share Posted January 19, 2019 Did the pedi test for strep? I can't imagine 5 days of antibiotics is going to cut it. It took us two, 2-week scripts to even start seeing improvement. My prayers to your friend, her child, and her family. I know the horror they are going through. 1 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted January 19, 2019 Author Share Posted January 19, 2019 6 minutes ago, Noreen Claire said: Did the pedi test for strep? I can't imagine 5 days of antibiotics is going to cut it. It took us two, 2-week scripts to even start seeing improvement. My prayers to your friend, her child, and her family. I know the horror they are going through. Her strep test was negative, but she was positive for something called mycoplasma. Her mom and I agree that 5 days seems woefully inadequate. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted January 19, 2019 Share Posted January 19, 2019 Zithromax is a good choice for mycoplasma, and a 5 day course actually covers you for about 10 days. But she may need beyond that. Also, did they culture for strep or just rapid test? How about Epstein Barr Virus? BetaLactam antibiotics are usually preferred as they have neuroprotective qualities, but I don't know that they touch mycoplasma. My biggest advice while they try to find someone is to try ibuprofen. Dosage same on the bottle, around the clock the first day or so, then three times a day until they get in with someone. It can make a huge huge difference once they get the inflammation under control. Benedryl sometimes is added to that protocol, especially at night. Some people suggest getting the dye free to avoid any dye reactions on top of the PANDAS. And keep calling places and ask if they treat PANDAS. 3 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted January 19, 2019 Author Share Posted January 19, 2019 @Ktgrok They did culture for the strep, not sure about EB. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 20, 2019 Share Posted January 20, 2019 5 hours ago, Ktgrok said: My biggest advice while they try to find someone is to try ibuprofen. Dosage same on the bottle, around the clock the first day or so, then three times a day until they get in with someone. It can make a huge huge difference once they get the inflammation under control. Benedryl sometimes is added to that protocol, especially at night. Some people suggest getting the dye free to avoid any dye reactions on top of the PANDAS. I agree with giving ibuprofen plus an antihistamine. We do Claritin in the morning and Benedryl at night because of drowsiness with the latter. We've also seen improvement with a high EPA fish oil, turmeric, and resveratrol. CBD oil may also help with inflammation. Hemp-based CBD oil is legal everywhere and in states with medical cannabis then they could try cannabis-based CBD oil. We did end up having to start prescription anti-anxiety medication. Zoloft caused aggression so the neurologist switched her to Prozac and that worked better. 1 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted January 20, 2019 Author Share Posted January 20, 2019 @Crimson Wife Nice to "see" you, I feel like I haven't seen many posts from you these days! Thank you for the advice. A little more info: The EB virus test was negative, they did both the instant and the cultured strep, both were negative. No flu present, but high IGG for flu, so apparently multiple past infections with flu virus. It really appears to be the mycoplasma that set off the PANS. The dd seems to have a pretty fragile/delicate system. Multiple food allergies and sensitivities, starting pretty quickly after birth. Mom breastfed, but had to restrict her own diet during that time or dd would react to her milk. She continues to struggle with food, and the PANS has also caused quite a bit of food avoidance, though that seems to have calmed down a bit. The zitrho does appear to be making a positive difference, although it's still two steps forward, one step back. But this is the first improvement they've seen in two weeks, so it's very welcome! Quote Link to comment Share on other sites More sharing options...
geodob Posted January 20, 2019 Share Posted January 20, 2019 Mycoplasma has been identified as one of the bacteria causing PANS. It is fortunate that Zithromax has been prescribed. As it is effective at killing off the Mycoplasma bacteria. I'll attach a link to a research article. Where if you scroll down, Case 3 is specific to Mycoplasma. But importantly, it details the dosage and how long it is taken. Perhaps your friend could the article out, and show it to the doctor that prescribed the Zithromax. Which could be used as a guide for its usage. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4442568/ Zithromax is the same as Azithromycin. (BetaLactam was mentioned. But BetaLactam inhibits bacteria from developing Cell Walls. Though Mycoplasma dont have Cell Walls.) 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted January 20, 2019 Share Posted January 20, 2019 Definitely sounds like zithromax is the right choice. I'd definitely have them try an anti-inflammatory, ibuprofen can be magical in these cases. 1 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 21, 2019 Share Posted January 21, 2019 On 1/20/2019 at 12:00 AM, Monica_in_Switzerland said: @Crimson Wife Nice to "see" you, I feel like I haven't seen many posts from you these days! Thank you for the advice. Blame this cutie 1 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted January 21, 2019 Author Share Posted January 21, 2019 @Crimson Wife Ahhhh!!! Look at his giant baby head on his spindly little baby neck!!! I looooooove that little smirk! Congratulations!!! What a cutie!!! Quote Link to comment Share on other sites More sharing options...
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