3boysmom

Also look into this: http://www.mitoaction.org/files/AlyssaDavi.pdf linda

Ok, I should know this because I am not a newbie, but I have never noticed a herx reaction while dealing with augmentin and strep. This time is a new ball game now instead of OCD and strep, we have tics and Coxsackies. Today is day 6 of Valtrex and although the tics seemed much better the last 2 days...today he has a rash on his chest and his tics are "ramped" up a bit more. Could this be herx? How long after a treatment begins do you then see herxing ( this is day 6 )? How long does it typically last for? What should I be giving him to help detox the toxins? (please don't overwhelm me... If you could pick one thing to detox, what would it be?) Linda

If you see Dr. T., then it would be great to express those exact concerns with him. I'm sure he has heard these questions before and will have some good answers for you. Very reasonable concerns, but you are off to a smart start by making your list of questions and concerns ! Linda

Our son got OCD from strep and 3 years of PANDAS with no tics until 2 months ago. We have tested for Lyme several times and always negative. This time we found that he had a hidden Coxsackie Virus. He has been improving on antivirals. Tics are much better now that he is on the right antibiotic. So his tics came from a virus. Linda

I do think that it is definately worth looking into an infection of some type. Your best bet is Dr. T. because he will know what tests to run and the other PANDAS doctors are also expensive. Look into yeast issues as well as viral issues along with strep titers and mycoplasma....oh, and Lyme. Best of luck(I bet you find something....) Linda

Duplication of 16p13.11 Don't know how important it is because when he is healthy, he is a typical kid. Maybe this is why he gets ill and presents neurologically instead of physically. We are going for mitochondrial DNA testing next. Linds

Our DS began this journey 3 years ago with classic PANDAS - after struggling to find help. He eventually got 90% better with Augmentin XR. Then needed IVIG. Then discovered Mycoplasma. Then relapse again and found off the chart epstien barr (I believe this is mono) treated with 2 antivirals. Doing great then sick on Thanksgiving and another relapse- this week we discovered off the chart coxsackies virus, just began antivirals Friday. So yes, our child gets neurological symptoms instead of physical symptoms with all infections! We will be testing for mitochondrial DNA issues. Prayers to you... Oh BTW - in the 3 years of issues this illness is the first that brought on Touretts like symptoms instead of OCD. I hope and pray that it goes away after treatment but the verdict is still out.

thank you! I'm overwhelmed, but I know that I can do this! If I have learned anything in these last 3 years it is that I am a lot stronger, smarter, and determined than I ever knew I was! So I guess I'll take a deep breath and go in for another round! Wish us luck and THANK YOU! Linda

thank you so much for your reply. Is mitochondrial a scary diagnosis? Not sure what to think. Yes, I have followed your posts because you have been around about the same length of time as me and we too have 3 PANDAS kids. Oldest one still struggling with any infection. I really understand the importance of the name change to PANS now.... It is so important that if strep isn't the culprit, then something else may be! I may PM you for advice if the mitochondrial DNA is positive. Is that ok? Thanks, Linda SF mom

Increased tics after one day of valtrex. Does herxing accur with coxsackies? How long does it last?

We've dealt with OCD trigger from illness but never tics until a few months ago, steroids helped a tiny bit or it just appeared that way because he just stopped talking because he ticed with every word. We ran a ton more blood tests and found coxsackies virus, so now we see if the antivirals do the trick.... Just saying, there may be a hidden infection, don't give up, ( I'm being a total hypecrit because I am freaking out myself waiting to see if this time does the trick ). I pray we both find our answer, I miss his conversations! Linda

Totally agree! Everything freaks me out. How refresshing that his behavior was that of a typical boy his age-" knuckle head".

Actually there was some probiotic that a doctor told me could be given with antibiotics and explained the reason, but I can't remember because it was an off the subject comment while discussing a bigger problem. ( so I only half listened). Sorry, Linda

I know that some illnesses have no herxing while others have a lot while die off during treatment. What about herxing when treating coxsackie virus with Valtrex? Is herxing common with coxsackie die off? How long does it last and what helps? Ds began Valtrex last night and tics are already a bit better, but am wondering what to expect. Also how should we protect from yeast with this new medicine being added to augmentin XR? Probiotics weren't enough to protect him in the past when he was on multiple antibiotics in the past.. Thanks once again! Linda

thank you so much for your reply. Is mitochondrial a scary diagnosis? Not sure what to think. Yes, I have followed your posts because you have been around about the same length of time as me and we too have 3 PANDAS kids. Oldest one still struggling with any infection. I really understand the importance of the name change to PANS now.... It is so important that if strep isn't the culprit, then something else may be! I may PM you for advice if the mitochondrial DNA is positive. Is that ok? Thanks, Linda

wow, you've done a lot! Dr. T wants us to get mitochondrial DNA testing.....beginning to wonder http://www.mitoaction.org/files/AlyssaDavi.pdf

Yes, DS had 6 with Dr. B. Dr. T suggested we test for it and also test for mitochondrial DNA which I had never heard of before, but after reading about it I am now wondering. http://www.mitoaction.org/files/AlyssaDavi.pdf

Yes, DS had 6 with Dr. B. Dr. T suggested we test for it and also test for mitochondrial DNA which I had never heard of before, but after reading about it I am now wondering.

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!

The problems could be the high antibodies themselves. The autoimmune issue thinks he has strep and even after infection is gone, the antibodies are still building because it is misrecognizing. They think that the antibiotics do more than clear infection, but also hold back the antibodies from building.

The problems could be the high antibodies themselves. The autoimmune issue thinks he has strep and even after infection is gone, the antibodies are still building because it is misrecognizing. They think that the antibiotics do more than clear infection, but also hold back the antibodies from building.

Flu must? Really? The other PANDAS doctors say to stay away from that... Very surprised. Hopefully that will not be an issue for her.

OMG! It is not always about the active strep. He needs antibiotics for the high titers. You really need a specialist, the right treatment will bring him back, the extra cost is worth the knowledge and direction. Also, he could have infections that are difficult to find.

Candida was the cause of some small sniffing tics for our son. Fluconazole did not do the trick, but Nystatin along with Ketaconazole worked great. However, he recently had a short sickness and some very bad tics are going on right now, and the Nystatin along with Ketaconazole are not doing the trick this time. So it could be a different problem for us now.

yes, he has myco and we've been working on clearing that for a while now, so the tics are new but not the myco....