Advil, Acyclovir for Coxsackie

[cobygurl]

Hi,

 

After about 9 months of trying of going between tics, tourettes, allergies etc...we finally had some bloodwork done and doctor said it shows my 4 year old has the classic immune pattern of children with PANS/PANDAS.

 

His bloodwork also showed elevated titres of coxsackie and mycoplasma (although they said we needed to take the mycoplasma again to have a definitive answer)

 

Anyways, doctor asked us to try advil for 7 days to see whether or not it made a difference. Surprisingly by day 3 of taking advil 3 times a day, he was 100% tic free for 2 days. As we tapered off the advil, the tics came back but I am wondering, does showing such a dramatic improvement on advil mean that he really does have PANS?

 

He was put on acyclovir and we are now on day 2. I think he is showing an improvement overall but he is still quite the ticcer while excited.

 

I am wondering if anyone has any experience with acyclovir, coxsackie and what you found to be helpful.

 

Any information or input would be greatly appreciated.

 

For months I thought he had tics/tourettes brought on by allergies (he has been on an extremely restricted diet for 8+ months now) and now we are being told it could be an infection...just thrown for a loop but grateful that maybe we are making some headway.

 

Thank you!

[cobygurl]

Can anyone weigh in? Thanks!

[queenmother]

We are pretty new at all of this and do not have coxsackie as a trigger so I am not much help. I will say, however, that if you saw improvement with the advil, then I would definitely pay attention. You are fortunate to have a doctor who would even suggest PANDAS/PANS to you to begin with and I would strongly recommend that you follow up on it.

I would suggest that you do a trial of doxycycline to treat the mycoplasm. It is a pretty benign antibiotic and well-tolerated by most and is recommended for myco. Since your son is so young, however, do not do it long term because it discolors teeth. It sounds like your doctor may know a little about PANS so I would consult him on it. Antibiotics are worth a shot to get the source while he is so young.

Wish I could be of more help and, of course, that is just my opinion.

QueenMother

Edited June 8, 2013 by queenmother

[cobygurl]

Thank you so much QueenMother! Any dialogue here is helpful and thanks for the info on the doxy (sp?).

 

We started to see Dr. T recently and so he was the first to say that yes, this could be an infection.

 

I need to recheck his Myco titres before they will treat but he is on the Acyclovir (he finished his first 10 days and is onto his second round for a total of 20 days). He seems to be improving but some of his tics are still present and his improvement is great some days, or he gies sideways or backwards other days.

 

We are are so hoping this will help our little guy. It's been a long and very stressful time but I am sure we can all relate. Thank you so much for responding, means a lot!