Mammom

Hi Faith, My DS7's major presentation is tics (motor and vocal). His cam score was 156, anti-lyso - 320, anti-tubulin - 1000, anti-dop1 - 2000, anti-dop2 - 8000. He did have abrupt onset after a documented strept throat infection (with sore throat, fever, very red spotted throat, ect.). He also has had separation anxiety, mild OCD, bedwetting, and night terrors. However, Dr. L thought his presentation was mild. He does not have any school problems (presents mildly there as well). The worst of his behavior is when he is home or with us. So, I don't know what this all means.....but wanted you to have my info. to compare with yours. Dana

This makes me want to bang my head against a wall. If your child had diabetes or cancer, would they ignore it and say "let's wait this out"? I always wonder what they would do if it were their own child...

Yes, I have e-mailed an called several times both to request a trial of another antibiotic and to let her know of the Cam score. I have not had any response from her since August. I may try to to a phone consult or maybe a follow up office visit, because she is just an hour and a half drive.

Yes, EAMom, I have read many of your posts. Your knowledge has really been helpful, and it just seems like you are onto something with these kids needing full strenght abs for an extended period of time. I am really not sure if I should try the Augmentin or Zithromax. Not that I can get anyone to prescribe either of them without an active infection. I asked our ped. several time in the weeks following onset for another course of antibiotics....but was never given anyting until Dr. L. Dana

Hi Momofgirls, Thanks for that information. It is very helpful to hear the experiences of others. We have been on the PenVK for about 2 months. Again, the lessening of symptoms from onset to now may or may not have anything to do with this. Is she still on the Augmentin at that same dose? I really don't know how I might get someone to prescribe that for us. The doctors we have seen seem to have more of a "let's wait this out" or "it will get better as he gets older attitude". It's just really discouraging.

No, our strep titers were low taken just prior to the office concult with Dr. L. So, she felt there was no active infection. He did present only with minimal/mild symptoms in her office. She did see some tics as well as chorea (piano fingers, milk maids grip, something with his tongue and also his toe). His symptoms are always worse at home or just with family. At the time of the office visit he had multiple motor tics and absoutely constant vocal tics (cough, throat clear, snort), but she did not see much of this . The next step for us was to get the cunningham test, but Dr. L thought maybe we should wait for an exacerbation. I went ahead and had the test run because we continued to have sypmtoms and still do. She prescribed antibiotics because I wanted to prevent another infection while he was stilling healing... Dana

All of your other numbers are in the normal range, assuming these are the results at 2 hours? The first 3 are at the top of the normal range. Based on your anti-lyso, I am guessing that you see little to no OCD - is that right? You are right - any OCD is minimal. He did start biting at cuticles and finger nails, which I assume could be construed as OCD? Yes, my note from Adita says 2 hours.

Hi Faith - He actually had an earlier bout of strep last sept., where he was treated with a 10 day course of omnicef. I actually noticed a few tics 4 - 5 days into the treatment, and the quickly cleared up. So, then in June he was treated with a 10 day course of Augmentin but I don't remember the dosage. I have always felt that perhaps the antibiotic/dosage in June contributed to the problem - like maybe if I had requested Omnicef again, he would have had a quick cessation of symptoms. But I will never really know this for sure. At any rate, we are on Pen VK 250mg (2x/day). He is better with new behaviors/movements seeming to come on one day and be gone within a few days. His hyperactivity comes in bursts, rather than the near constant fidgitiness that occurred in the beginning. I don't know if the antibiotic has anything to do with this. Dr. L did not seem to think it helps with symptoms - only if there is ongoing or active infection.

Hi all, I am new to posting on the forum, but have been reading since June. At that time, DS7 developed sudden onset of tics, extreme hyperactivity, mild OCD, four days after beginning treatment for strep throat infection. He was treated with Augmentin for 10 days. His symptoms continued to increase to include bedwetting, nightmares, and constant vocal tics. I first made contact with Diana P. via Pandasnetwork.org, and she has been extremely helpful. We saw Dr. L in August who did prescribe antibiotics prophylactically. She suggested the Cunningham test. I waited to see if symptoms were abating, but finally had the test run at the end of Sept. I wonder if anyone can explain these results: Cam Kinase II - 156 (this one I understand is above the median for Pandas on supporting doc. sent). It's these other numbers that I don't really understand: Anti-Lyso. - 320, Anti_Tubulin - 1000, Anti-Dop1 - 2000, Anti-dop2 - 8000. Any input would be greatly appreciated. It appears that those posting on this forum are much more informed than any local doctors that I have been able to discuss this with. Thanks much, Dana