MOM2AMAZ2BOYS

So, we were on the Azith originally, and on it for two weeks. It could have been a herx, but by day 14 I just felt it wasn't working and then we switched to the Omnicef and antiviral. We did not stop them at all. We don't have many options, as he is allergic to Amox so all of that drug family is out.

I'm still confused and concerned that we are heading down the wrong path. I was sure that we were dealing with Pandas/Pans and now I'm not so sure. Our ds had a sudden onset of tics and anxiety in May. He started with neck jerk, followed by eye blink and roll, and facial grimaces. It was a month and a half later before strep antibodies and culture was found and treated with Azith, 5 day course. Tics diminished, but 2 days after that throat clearing began. This lasted few days and then neck jerk crept back in. Then we saw Dr. T, who put him on a longer course of Azith. After two weeks he seems to be worse with the neck jerks and we switched to Omnicef and an antiviral in case he was in a flare. After a week of this combo, he was almost back to almost baseline, maybe 90 percent. This was short lived. Second week in, still on same drugs combo, it crept back in. Now we have what I think is a snort, throat clear, eye blink, occasional neck jerk. This began while still on meds. He did not renew the antiviral but he was on this when it occurred. I guess I'm confused as to why he could be in another flare if he was on both meds when the uptick happened. Now I'm not sure what to do. He did just start kindergarten 2 weeks ago. But again if he was on both meds, could he still flare? We have no history of tics or tourettes in our family. What brought me down the pandas road is that he had eye blinking at 2 that we thought was transient tics. They went away and never returned for 2 and half years. NO OTHER TICS. I swear this is true. Not anything that even resembled one. Then this sudden onset years later. Even neuro said this is not the usual course of tourettes. In your opinion does this sound like PANDAS? Could he get better and it go away so fast?

http://matertechnologies.com/ Haven't tried but find this interesting.

I just wanted to thank everyone for their replies. Your support and advice is helping so much. valsmom his myco IgG was 220 in June and flagged as high. His myco IgM was 770, just in the low positive range. The strep was 550. mama2alex thanks i will take your advice about the separate board.

Thank you for all your replies. I'm seriously considering the Igeneix Lyme testing for that and coinfections. If we're missing something here, then we are just going to prolong my poor son's agony. Anyone know of a good Lyme doctor in northern jersey? Also, should we be seeing an immunologist? As far as the olive leaf for inflammation...how much do you give?

I did try ibuprofen for a week 2x day but it didn't seem to help. He wasn't too bad although he still had the neck tic, but not bad. But it didn't seem to make a difference. I aske Dr. T if that was indicative that this wasn't PANS/PANDAS, he said no. I'm so nervous about the fish oil since I have read posts about increase in tics. I did by one with a high ratio of EPA vs DHA as recommended but i never used it because of the fear of tic increase. Is the olive leaf oil safe for use with antibiotics? How much do you give? Where to buy?

Thank you for your response. There are so many tests that were run, I'm not sure which are related to the immune response. Dr. T did go over the results, and when I got home, I was confused as to which ones were related to immune function. It was very overwhelming. But when he was going over it with us, he mentioned each test and that they were good results. Except for the Pneumoccoccal Vaccine ones.

Hi. I'm new to this PANS/PANDAS and I'm feeling lost and confused. I'm reading through all the forums and I feel like I just have no idea what I am doing. I am so informed, yet I feel like I am not helping my son at all. Here is his story. Any input or advice on any of these questions would be helpful. My son started with a hard eye blink when he was 2. This lasted on and off for 4 months. For 2 and a half years, he had absolutly nothing. We took him to a neuro, who said transient tics and that was what we left with. We just monitored him. That was it. We always new the possibility of a new tic could come, but you can imagine after so long, we kind of just thought and hoped that was it. Flash forward to tis May, right before his 5th birthday. One day his father went outside to take out garbage, and didn't say anything because his 10 year old brother was sitting next to him playing. When dad came in, he was hysterical at the door screaming. We thought this was a one time deal, and that we just gave him a scare. Then, on the baseball field a week later, I had to run my older son to the bathroom, was gone a few minutes, and he was again upset on the field. Prior to this, in the house, he felt the need to be in the same room, follow his grandmother or me around, and would say "I love you." Every few minutes. We didn't realize at the time that this isn't really normal. Right around this time, he started with a neck jerk tic, and that seems to have been with us this whole time, except the few days when he was on azith 5 day pack, then it came right back. Within a week he had multiple tics, the neck jerk, eye blinks, eye rolls, facial grimace. The neuro thought this could be PANDAS and sent us for bloodwork. Strep and myco were high. Lyme only band 41, so it was negative for Lyme. Thats when we did a culture, positive for strep, and went on the 5 day zpack. In 3 days he was better and 2 days after the meds he was 100%. Then it slowly crept back in, and 3 days later with a throat clear, which just lasted a few days. Trying to make this short. We are now seeing Dr. T. The first neuro said this is not the usual course for TS, and he thought PANDAS, so we wanted to see the expert. Dr. T gave him Azith, and by day 14 he was no better, even worse. (He was getting better right before this. Just the neck jerk and not too bad or too often.) So Dr. T switched to Omnicef with an antiviral, in case he was in a flare. We are on Day 3 of this, and yesterday I wanted to cry. His neck jerks are harder now, and look like the even hurt, and he started the eye blinking which I have not seen since early June. So here all my questions. Feel free to chime in with comments or suggestions for me. 1) If this is PANS, which Dr.T says it probably is, then why is it PANS and not PANDAS? He had a positive culture and titers. He did the other bloodwork, and he thinks his immune system is functioning good, the only thing he found was SADNI due to a poor response to some of the serotypes in the Pneumoccoccal vaccine. 2) Why do the antibiotics seem to make him worse? I was wondering about the dye in the azith. The omnicef and antiviral have no color. Although he has been eating everything with dye for two and a half years with no issues. I read about the die-off or yeast but how do you know? And what do I do on my own about this since Dr. T has not mentioned this. 3) We have been on the probiotic twice a day, Culturelle as recommended by Dr. T. Have heard this can increase Tics, but what to do when he isn on these antibiotics and had some stomach troubles in the beginning? 3) Dr. T is very hard to reach when you need him. We called on a Monday to tell him azith was worsening things, and we just wanted a response via office staff. We called him each day until Thurday night to get a response, and thats when we switched to Omnicef. I'm not sure how we can help our sons with such limited access to his doctor. Are there any doctors in NJ that I could see for this. His pediatricians are useless, as they don't believe. I like Dr. T and would like to remain his patient, but I'm concerned about the lack of access.