JPdad Posted November 21, 2012 Report Share Posted November 21, 2012 DS(5) has been flaring for about a month. First he was treated with augmentin for a suspected ear infection which didn't help, then he was given zith for a suspected mycoplasma infection. Finally they actually blood tested him and found a coxsackie B infection. Being that it is a virus, antibiotics don't work. This infection is supposed to be self-limiting to 10-14 days, but we are about 30 days into tics and hyperactivity right now. Ibuprofin isn't helping much. Has anyone had a kid flare from this before or have any suggestions? Link to comment Share on other sites More sharing options...
kos_mom Posted November 21, 2012 Report Share Posted November 21, 2012 JPDad, Coincidentally this post just came up on Dr. T's FB concerning what appears to be an adult with coxsackie. It seems to indicate antivirals could be helpful: "Got the best news EVER tonight!!! I was contacted by Dr. T. My labs show Mycoplasma consistent or chronic infection. Pneumococcal titers are high although I have never had the pneumonia vaccine??, There is persistent evidence of Coxasackie A titers which is rare in adults. This is a known trigger of PANS. Dr. T has a reasonable suspicion that...there was an active or chronic mycoplasma and/or coxsackie infection that was activated by the live nasal influenza vaccine. It can be treated with antivirals and antibiotics which I will start tomorrow. I am so appreciative to Dr. T for his expertise and persistence. All these tests could have been done while at Upstate University Hospital by my team of neurologists and movement specialist through Upstate University. Their response is " I don't really buy into PANS". Their recommendations are for me to establishe care with a psychiatrist/psychologist as they may possibly by a psyhogenic disorder. ARE YOU KIDDING ME!!!! Maybe if Suny upstate did the appropriate testing they would have known the cause of my symptoms. Thank you Dr. T for thinking outside the box, giving me hope, and reassuring myself that I am not crazy!!! The movement disorder specialist and I had a heated debate about PANS and he said... " If this Dr. T can cure you I want you to walk into my office and tell me I am wrong" I indeed will do this. When the medical profession does not have answers for your ailments they are too quick to say a psychogenic etiology may be the cause!!! Thank you for all your prayers!!" Ko's Mom bobh 1 Link to comment Share on other sites More sharing options...
beeskneesmommy Posted November 21, 2012 Report Share Posted November 21, 2012 Although DS6 did not become infected (with any outward symptoms), he flared significantly when exposed to outbreaks at this school and then around 2 sets of friends. It was clear that the was reactin to Coxackie when I looked acrefully at the timeline. Dr. T has spoken specifically about flares to Coxackie exposure. Link to comment Share on other sites More sharing options...
LNN Posted November 21, 2012 Report Share Posted November 21, 2012 You might want to ask on the lyme forum or PM SFMom - I know she dealt with Coxsakies extensively. I like L-Lysine as an antiviral (can get at any health food store or amazon). Research has found that it prevents replication of HHV and EBV. Not sure about coxsakies but I want to say SFMom used lysine in addition to some other anti-virals. Link to comment Share on other sites More sharing options...
JPdad Posted November 21, 2012 Author Report Share Posted November 21, 2012 You might want to ask on the lyme forum or PM SFMom - I know she dealt with Coxsakies extensively. I like L-Lysine as an antiviral (can get at any health food store or amazon). Research has found that it prevents replication of HHV and EBV. Not sure about coxsakies but I want to say SFMom used lysine in addition to some other anti-virals. Do they sell L-Lysine in a liquid or chewable tablet? My 5 year old can't take pills. Link to comment Share on other sites More sharing options...
sosudden Posted November 22, 2012 Report Share Posted November 22, 2012 My daughter tested positive for a few different ones -both A and B. She did take antivirals for a total of 20the days and it helped her!! I know there are herbal/natural antivirals that can work for people. Link to comment Share on other sites More sharing options...
Tamistwins Posted November 28, 2012 Report Share Posted November 28, 2012 I just found out that my 3 pans children have mycoplasma and high titers to coxsackie a. My older son also has another recent infection to EBV or chronic and never cleared. We will be trying antivirals for the first time and hope that it helps all this craziness. Link to comment Share on other sites More sharing options...
minimaxwell Posted December 3, 2012 Report Share Posted December 3, 2012 Which anti virals were rx'd? Link to comment Share on other sites More sharing options...
mdmom Posted December 3, 2012 Report Share Posted December 3, 2012 Without having positive tests for any viruses, our doc prescribed Valtrex 1GM BID for my son. Doc had a suspicion that he had a high viral load. Doc was right - DS started reporting that he felt much better on what he started to call the "magic blue pill." We stopped Valtrex 2 months ago and noticed some more irritability and overall malaise. We used Lauricidin in it's place. Doc advised us to get DS back on the Valtrex, and we did. DS is feeling better again. We also continue with Lauricidin. Not sure how long he will have to stay on the Valtrex, but it clearly helps. Link to comment Share on other sites More sharing options...
JPdad Posted December 3, 2012 Author Report Share Posted December 3, 2012 We got a 10 day script for Acyclovir. After 6 weeks of trying Augmentin, Zithromax, Predisone, and Ibuprofin, we are finally seeing his symptoms greatly reduce. We're currently on day 7 of 10 with the acyclovir. They say coxsackie B virus is self limiting and usually goes away on it's own in 10 days, but I think with our kids compromised immune systems it can hang around much longer. Link to comment Share on other sites More sharing options...
landamom Posted December 9, 2012 Report Share Posted December 9, 2012 Hello, I was bumping this post in hopes of getting updates from those using Valtrex or Acyclovir. How are the kids doing so far? We are considering starting acyclovir for Coxsackie. Thanks! Link to comment Share on other sites More sharing options...
JPdad Posted December 10, 2012 Author Report Share Posted December 10, 2012 Hello, I was bumping this post in hopes of getting updates from those using Valtrex or Acyclovir. How are the kids doing so far? We are considering starting acyclovir for Coxsackie. Thanks! We got to about 80-85% better with 10 days of acyclovir, so the doc gave us 10 more days of it. I believe a 20 day course is a typical treatment for this medicine. Unfortunately we got an ear infection on top of the Coxsackie, so now we have both augmentin and acyclovir going at the same time. Link to comment Share on other sites More sharing options...
landamom Posted December 10, 2012 Report Share Posted December 10, 2012 Thanks for updating! Glad to hear you've had such improvement! Just started on Acyclovir today. We're also still on Zithromax and amox but she has plateaued or gotten worse again so I feel they are no longer working. I'm willing to give an antiviral a go at this point event though we can't tell if the Coxsackie is old or new. I was wondering what dosage your son is on? We are supposed to do two tsp. 2x day. Thanks- Link to comment Share on other sites More sharing options...
JPdad Posted December 10, 2012 Author Report Share Posted December 10, 2012 Thanks for updating! Glad to hear you've had such improvement! Just started on Acyclovir today. We're also still on Zithromax and amox but she has plateaued or gotten worse again so I feel they are no longer working. I'm willing to give an antiviral a go at this point event though we can't tell if the Coxsackie is old or new. I was wondering what dosage your son is on? We are supposed to do two tsp. 2x day. Thanks- Sounds like you got the same dose as we did. For whatever reason, my son's symptoms were way worse, more frequent, and longer lasting with with coxsackie infection than they ever were in the past with strep or ear infections. We're about 8 weeks in at this point, and though he has improved quite a bit, he still isn't fully better yet. Link to comment Share on other sites More sharing options...
3boysmom Posted January 18, 2013 Report Share Posted January 18, 2013 Think we found our new mystery flare trigger.... Coxsackie A & B. !! Labs show titers 1:1600! (should be 1:100). Will find out what the next step is.... Hoping this is the new cause! Link to comment Share on other sites More sharing options...
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