Cmac
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Posts posted by Cmac
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Wow—that sounds intense. So glad that the first exacerbation is settling down. Have you determined a trigger/triggers? Strep? Myco P? Lyme? Mold? There are tests for all of these things. Does Motrin ever help temporarily with symptoms or take the edge off? Antibiotics and steroid tapers both helped my son through flares.
Wishing you all the luck in the world with this!
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I’m sorry! I’m not on this board much anymore or would have answered sooner. Yes, my son has PANS and also caught Covid last March (in 2020). His symptoms were light compared to mine and my husband’s. However about 8-10 weeks later he started showing PANS symptoms again—mainly intrusive thoughts. (His first PANS exacerbation started in August 2018). Checked blood levels and not only did he have Covid antibodies but also his strep titers had gone up again after having been low for so long (he has not had strep since his initial exacerbation in August 2018). A 6 day steroid burst ended this flare.
Let me know if I can answer any other questions. Hope your child is doing better.
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Wow! I’m really sorry. That sounds completely overwhelming and awful to have to deal with. One child being sick is hard enough, but two at the same time? I have one PANS child—I can’t imagine if his sister starting exhibiting symptoms, too.
Have you had blood work done for both of them? Three or four strep infections is raising a red flag. I’m assuming you checked for strep again this time? Have you checked myco p? Is Motrin providing any relief? Is there a PANS specialist in your area?
Again, I’m really sorry—that sounds chaotic. Here’s hoping you find answers very soon.
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I'm not sure--hopefully someone more experienced than I am can answer the question about a culture without a rash. I just can't believe it's 2020 and we're still having to fight doctors about taking the possibility of PANS/PANDAS seriously. I will ask a friend who is way more experienced in this about the various tests you can check/ask for --when you find a pediatrician or doctor who will agree to run them. Also, lots of good threads here on this board about which tests to ask for.
In the meantime, hang in there! You'll get your daughter the help she needs.
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Wow! I’m really sorry you and your family are dealing with this. It definitely sounds like PANS to me. Have you tested her for anything else besides strep? Myco p? Lyme? My 7 year old had both Myco P and strep in August 2018 as his triggers. We cycled through several different antibiotics (starting with amoxicillin which just barely helped) before finding the right combo for him. It took months for him to get back to baseline and he does have flares from time to time. And yes—teeth can be a big trigger for some kids—it is for mine.
I’d definitely look for other triggers besides strep. Also silly question but your drs are doing a strep throat culture in addition to the rapid when they test for strep, right? Once my son’s rapid came back negative, but culture was positive three days later. Also isn’t an anal rash a sign of strep, too?
Good luck and keep digging for answers!
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He is! Thank you for asking. We did a steroid burst for 6 days and he said the intrusive thoughts went away or were so minor that he could deal with them easily. Here’s hoping it lasts!
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Thanks Wisdom-Seeker for the reply. His doctor recommended that we try a 5 day steroid burst so we're on Day 1 today--fingers crossed. I suppose the silver lining here is that he told us about the intrusive thoughts and was open about them. He's also eager to try the steroids which makes a nice change from the past when he first got sick and I had to force medicine on him.
And thanks for the reminder about focusing on other anti-inflammatory things. He's definitely up for exercise. I've been okay with socially distant play dates like bikes rides and/or hikes with friends. I'm grateful for the Covid19 antibodies--but they're a double edged sword here!
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Has anyone’s child come down with the coronavirus and experienced a flare?
Backstory—my son was diagnosed August 2018 with PANS—strep and myco p were his triggers. It was a bumpy 8-9 months and then he got steadily better. The next year was wonderful—he weathered loose teeth, colds, and a month long stomach bug with minor flare issues. In March my husband and I both got really sick with covid19 and then thankfully recovered. Both of my kids seemed to get sick for a day or two with mild symptoms, but nothing else. Now ten weeks later he’s in a flare—not terrible—just intrusive thoughts. He tested positive for the covid19 antibodies, but his other titers seem to have gone up as well (strep and myco p; strep culture came back negative). The doctor’s theory is that covid19 is inflammatory and could have kicked the other antibodies into high gear. Is anyone else experiencing this?
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I’m so sorry. I know exactly how you feel. My guess is that you’re the primary caregiver so you’re seeing it/dealing with it more than your husband. Try to get a break for yourself every now and then (I know it’s extra hard with quarantine issues, etc) but if you can even go for a walk by yourself it can help.
It’s all just so hard. Every bit of it. It’s a constant game of whack a mole as you try to figure out exactly what is causing the flare.
It won’t always be this bad. Things will improve. And you will find the strength to deal with future bumps in the road.
Take heart—we’re right there with you in the trenches!
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I feel your pain. After a year of pretty much no symptoms--all of a sudden intrusive thoughts have popped up again out of "nowhere" again. I'm awaiting the results of a strep culture (the rapid test was negative) but am wondering what else it could be. I just really, really, don't want him to back "there' again.
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Yes! I feel like my son was always complaining of being itchy. Sometimes, he legitimately was breaking out in a rash, but other times there wasn't anything I could find and he was scratching like crazy. Just all part of the "fun" I suppose. 😕
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The way it's been explained to me is that we have bacteria in our mouths at all times. When a tooth is loose/falls out/or is cutting through the bacteria can get into the bloodstream thus causing the immune system to "overreact" and mount a defense. Some people have their kids take Motrin and/or antibiotics a day or two before a dental appointment, the day of, and a few days after. My son definitely had a flare up when he lost a couple of teeth and then almost immediately the adult teeth came through--it was intense. But the good news is that it doesn't always happen! This last winter he lost three teeth almost in a row and had them come in with no issues.
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So we didn’t see any real improvement on amoxicillin—he was on that for 14 days. Then we saw an infectious disease specialist who tried Azithromycin for 5 days, then Doxy for a week and Keflex for a week. No real improvement—maybe moments here or there but things also seemed to get worse. Then we saw a PANDAS specialist—Dr T—and tried Biaxcin for a month. Some improvement, but then he added in Augmentin which again helped. Then switched to Clindamycin and Rifampicin which again helped (each switch prompted some setbacks). That last combo seemed too harsh for his stomach and we switched back to Azithromycin. We also went gluten and dairy free for 6 months or so in the hopes that it would help get down the inflammation. Honestly, I think it was a combo of longer term antibiotics plus gf and df plus time that did the trick.
I know the stress and heartbreak you’re feeling about your baby. You will get him back fully. That was one of the things Dr T said to me and though I doubted it at the time and then during the process it did indeed happen. And when I get an attack of the “what if’s” I try to remind myself that if he does fall off the cliff again we can get him back again.
Are you seeing a PANS/PANDAS specialist?
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Hi,
My son was on antibiotics for 6 or 7 months and it wasn’t till his strep and myco p titers fell that we saw great improvement. I think even though the strep was gone the antibodies stay elevated for months afterward. Certain symptoms of his went away during that period—only to be replaced by other symptoms/rituals, etc. Finally, after months. I could get him to see that some of the remaining things were just “bad habits” like refusing to walk on our new rug and he slowly started to break those habits.
Also teeth were a big trigger for him. Loose/losing teeth and having new teeth come in all played havoc with tics/ocd, etc. But take heart—he just lost three teeth this past winter and now all three are coming back in and there were no flares so it may not be that you‘re looking at 5 more years of teeth triggered flares.
Hang in there—that pit in your stomach will eventually ease up,
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Anytime—good luck!
Just about a year ago I was crying along with my son who was covered in hives and making horrible noises every time he had intrusive thoughts.
Now he’s happy and healthy so there is definitely hope.
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Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018.
The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like there were some minor signs from earlier in the summer, too. I had never heard of PANS/PANDAS before all this.
As for your original question I think we started to see some improvement after about 8 weeks on a certain combo of antibiotics (biaxin and augmentin) and then dr switched up antibiotics to get the myco p. Although no two kids’ path to recovery is the same it does seem like it takes awhile to get better. (I had such high hopes for our first 10 day course of amoxicillin that the pediatrician put him on when she discovered the strep).
Hang in there—it’s going to get better.
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I’m scared to say yes, but....yes. Since last May he’s been doing really, really well. A few bumps along the way, but nothing major. He talks to me about what it was like when he was so sick —the intrusive thoughts and beliefs he had—it’s enough to make me cry, but he seems to be processing it all.
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He didn’t have Lyme—but he had strep and myco p—those were his two triggers!
He’s doing great now! -
We stopped all antibiotics and for the second time (which was worse than the first) the pediatrician had us do a double dose of Zyrtec (once in the morning and once in the evening even though the dose is for 24 hours) for a few days and also a double dose of steroids for 2 days. The second rash lasted a solid week and spread everywhere! I thought it was a penicillin allergy but now I think it was actually a “serum like sickness” (googling rashes/allergies on this board gave me that idea) because of the way the symptoms unfolded. At the end of the week the rash looked like fading bruises.
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My son was on full dose antibiotics for about 6 or 7 months and then twice a week for 6 more months. So far his stomach seems to be okay—a little intolerant of dairy (but I suspect that was always the case with him).
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Yes, this happened to my son twice. Once after 5 weeks of Clindamycin and once after 8 days of Augmentin. It took about a week to clear each time and we had to use Zyrtec and a steroid. So sorry you’re dealing with this and I hope he feels better soon.
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First of all, I’m really sorry this happened. I’m wondering what else was he tested for besides Strep. Myco p? Lyme? In my son’s case it was both strep and myco p that was causing the symptoms.
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What other antibiotics have you tried? Azithromycin didn’t work for us for myco p either. Biaxcin/Augmentin helped and then Clindamycin and Rifampicin seemed to do it (warning—pretty tough on the stomach). Also it took about a month of being on a new antibiotic each time for us to notice differences. Intrusive thoughts/images were the last thing to go.
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We did a whole bunch of different probiotics—Culturelle, GutPro, Flora, etc. For antibiotics the ones that he was on longest were a combo of Biaxcin/Augmentin and then later Clindamycin/Rifampicin because the strep came down, but not the Myco p. (The Clindamycin was really rough on his stomach though).
Treatment options for previous sudden-onset symptoms highly suspected to be PANS
in PANS / PANDAS (Lyme included)
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Yes Motrin is the same as ibuprofen or Advil—it helps with inflammation. Do you have a good PANDAS doctor where you live?