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Hi,

 

DS 5 just had his titres checked for coxsackie after 3 rounds of Acyclovir. He was put on the Acyclovir by Dr. T. I should have the results in a few days and can post a follow up. At the point all I do know is that he had elevated coxsackie and on the Acyclovir his intense "itching" tic plus a few others got up to 85% better. Still not 100% but we'll know more about the next step in a few days.

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Haven't retested Coxsackie titers. Dr. T started him on Valtrex in January and it cost us almost $400. A month, so our pediatrician switched us to acyclovir. (Virtually the same medicine as Valtrex, but affordable) When Coxsackie first hit DS, he couldn't speak 2 words together without ticing so he began to use sign language. Now months later, he is about 85-90% tic improved (not tic free but manageable). Can't say it happened overnight but it is definately what did the trick for us this time. Best of luck! Linda

Edited by 3boysmom
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Hi Linda,

 

Thanks for the information! Just curious how long were you on the Acyclovir? How did you know when to stop or are you still on it?

 

From your post, my understanding is that your DS has been on it for months...is that correct? I was told that 3 refills is probably the most my son can do (10 days each refill for a total of 30 days.). My son was 4 just turning 5. Maybe that is why he was only told to do 30 days total?

 

Also, was it vocal tics your DS had when coxsackie hit? Do you take anything (meds, supplements or homeopathics) now to help?

 

Thx!

Edited by cobygurl
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Our DS13 has been on Acyclovir for 5 months now. He is also on Augmentin XR 1000. This all started after strep and we couldn't find help 3 years ago (he was just turning 10) so he became very dysfunctional before anyone would help. Drs only were willing to give SSRI's . His problems from Strep were mostly OCD and attention but no tics then. But the Prozac made him worse and then he had body movements and was diagnosed with Sydens hymes cohrea (spelling) so then he got the antibiotics. His Strep titers were almost 2000, one of the highest they've ever seen. So now I guess we have moved from PANDAS to PANS as this last flare was not from strep. He will stay on Augmentin until we have a stable handle on all of this. We have done a lot more than I am listing because it would take pages and we have 2 other sons that are on antibiotics but caught early in the game through Dr. L and Dr. B and Cunningham tests on all 3 boys.

 

Yes, his tics from Coxsackie were loud vocal tics like animal noises and sounds but he had loud gasping noises between every word he spoke and he was worn out by the time he said a sentence, so he began to make up his own type of "signing". He had about 3 refills of Valtrex

and as time passed on the medicine he kept slowly decreasing the tics. When the medicine script ended, his vocal tics were better but still bad and then started to get worse when the medicine ended. So they gave him more scripts (this time acyclovir ) and we are playing it by ear right now. Dr. said some are on it for years.

 

I hope this helped, this is a very difficult illness to figure out, but keep digging for answers... Prayers to you, Linda

Edited by 3boysmom
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Thanks everyone! My daughter has a loud holler as her vocal tic. It is not constant, but it comes and goes with stress, fatigue, fever, etc..... She calls it the upsets, because often time, she becomes very upset at the same time, sometimes simply because the vocal tic upsets her. She has also lately started an odd breathing style tic; she inhales and exhales as if she is hyperventilating when she is not (but I worry she will cause hyperventilation).

 

I am going to print out some articles on acyclovir and coxsackie + acyclovir and rubella. The immuno seems to be more worried about her rubella titers (146 with high being >9) than her coxsackie titers so he has her on amantadine. I am worried about both, and amantadine does not have an indication for coxsackie, but acyclovir does work on both from what I can tell.

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  • 8 years later...

Would love to hear any follow up on your journey with coxsackie and antivirals. this thread came up for me in recent research. maybe someone can guide me to newer threads addressing this topic?

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Posted (edited)

Kiddo was on acyclovir or famvir for years.  Her titers did not improve and her symptoms did not improve enough to actually point to the antivirals as a positive.  Her Rubella did go down with amantadine (169 to 14), but her coxsackie, and epstein-barr did not improve that I could tell.  Her epstein barr was over 600 when we started and over 600 when we stopped, so if it went down it was not discernable on that test.  It is possible her EBV titers were say 1200 in the beginning and 700 in the end, but that would not register on the test as both are over 600. 

Her symptoms have always been up and down and the only thing we have found that has been a discernable help is the antibiotics.  If we remove those, she goes into a near catatonic (must literally, physically move her from place to place, must feed her liquids by syringe, becomes incontinent) state with constant screaming all day.  

Sorry, wish I could offer a magic wand or more hope for us all.

Edited by Mayzoo
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