NVAmom

Hi Dr T, I have an 11 year old son originally diagnosed with Tourette's Syndrome when he was 7. He had a sever strep infection last spring with a return of all the PANDAS symptoms that we have been told for years were a comorbid condition that went with TS. Thankfully, he was diagnosed last fall with PANDAS and began Augmetnin 875 mg 2x/day. We have seen slow steady progress but still have a ways to go. He had blood work in Aug before the antibiotics. Here are the results: Lyme, Western Blot, Serum Lyme Ab IgG by WB IgG P 93 Ab - Absent IgG P66 Ab - Present - Abnormal IgG P58 Ab - Absent IgG P45 Ab - Present - Abnormal IgG P41 Ab - Present - Abnormal IgG P39 Ab - Absent IgG P30 Ab - Absent IgG P28 Ab - Present - Abnormal IgG P 23 Ab - Absent IgG P18 Ab - Absent Lyme IgG WB Interp - Negative Positive: 5 of the following Borrelia-specific bands: 18,23,28,30,39,41,45,58,66 and 93 Negative: No bands or banding patterns which do not meet positive criteria Lyme Ab IgM by WB: IgM P41 Ab- Present -abnomral IgM p 39 Ab- Absent IgM P23 Ab- Absent Lyme IgM WB Interp. - Negative Positive 2 of the following abnds 23,39,41 Antistreptolysin O Ab - 463.3 Anti-DNase B strep Antibodies 1:680 Medical history includes: chronic strep, tonsillectomy, adneoidectomy, reflux, frequent pink eye, chronic croup, frequent complaints of stomach pain Thank you for your posts!

I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I played the videos for her and she was able to point out the chorea movements that were affecting his balance. I knew his balance was off but did not see the underlying reason until she pointed it out in the videos.

Hi Coco, I am sorry that you are going through this. It is so hard to see your child improve and then lose the progress that was made. My son was misdiagnosed with Tourette's in first grade. We were told his tics, his behavior problems, seperation anxiety.....everything was a co-morbid condition of TS. He had an unbleievale exacerbation last Spring and was not correctly diagnosed with PANDAS until this fall. He went untreated for 4 years at least (looking back I think the first PANDAS episode was around 2 or 3). He started on antibitotics in Sept and the doseage was increased in Oct. He was doing great until his sister got pink eye....then we took about 10 steps backwards. He started prednisone after that set back and has made tremendous prgoress. He is now doing even better than before my daughter had the pink eye. Also, this may have already been mentioned to you, but I started charting his symptoms on a 10 point scale each day (thanks to a suggestion from this forum) and it has helped me see that things are slowly but surely improving. I pray that this will give you some hope that it is not too late for successful treatment for your daughter.

I also have struggled with the 'why my child?' thought. Now when I think about it I think of how I maybe able to offer help - to another parent in the future. However, what really excites me is thinking how my children might help others in the future. I daydream at times that my PANDA's son will have a passion for research or for healing ....to help others based on his battles.... or my daughter may have the same passion.... after seeing how her brother has suffered. No matter what their path, I feel our family is also learning to to have more compassion along the way.

Hi, My mom had sent me this link and was going to order this product for my son if we had to go the IVIG route or many more blood draws. It is called "Buzzy for Blood draws". I think the site says they are not readily available until 1/2010 but they say if you have special circumstances they might be able to help you earlier. Here is the link. http://www.needle-pain-management.com/buzz...lood-draws.html Would love to know, if you decide to try it, if it helps you dtr. Debby

Thanks Debby. It does help. The more info I go in with, the better, I think. How long was he on the 500mg twice a day before the dosage was raised? Angela He was on the lower dose for about 5 weeks. The reason he started the lower dose was because he had a sinus infection. However, he had extreme behavior the day before we found out he had a sinus infection so the psych increased his Abilify the day before stating the antibitotic. At the time I was just learning about PANDAS. When we began seeing improvements I felt it was too soon to attribute the improvements to the Abilify since that takes several weeks to start showing improvements...but was still not sure it was the antibiotics. I talked about it with our pediatrician and she agreed to extend the antibitoics until our appointment with Dr Latimer. When we saw Dr L she increased the antibiotics to the current dose. When we saw the improvements after the doseage increased I was positive the initial improvements were from the first antibiotic and not the increase in Abilify. Hope that makes sense.

Hi Angela, My son is 87 lbs, 11 years old. We saw some improvements in his mood, attention and rages at an initial does of Augmentin 500 mg 2x/day. We saw even greater improvements in the symptoms already mentioned on 875mg Augmentin 2X/day. His vocal tic also went away on the higher dose (until his sister got pink eye.....and now we are back where we started with regard to most symptoms). Hope that helps. Debby

Reading your post brought tears to my eyes. I've been there....maybe not over flashcards but getting the number or letter etc to look perfect...even after he had erased until there was a hole in the paper....then he was upset over the hole in the paper. I've tried holding him tight ....even though he may resist at first ....eventually his body would go limp and he would lie in my arms and cry and evenually it would pass ...until the next obstacle.

Hi CP, I know that is a difficult decision to make. My son was diagnosed with tourette's in first grade. We have learned within the last 3 months he was misdiagnosed and he actually has PANDAS. He had his adenoids removed in preschool. They were doing an endoscopy and bronchoscopy due to chronic croup and reflux and determined the adenoids need to be removed during that procedure. The only real change we noticed after that was he no longer snored. My son had his tonsils removed in first grade. He is now in 5th grade. He was also in his first full blown PANDAS episode but we did not know what it was at that time. Looking back I realize the seperation anxiety, social anxiety, defiance and OCD dramatically decreased after the the tonsils were removed but no real change in his vocal tic. However, at the time he was also working with a counselor. I remember thinking that it did not seem like the counselor was doing anything specifc to help him but figured I must be wrong because he was improving. Looking back I definitely feel it was removing the tonsils that helped. At that time, my dtr and I were getting strep at least 4-6x a year. It has been 4 years and we have had strep 1 - 2 xs. Hope that helps! Debby

I thought I had a better understanding of 'sawtooth' healing after reading some posts from yesterday but now I'm not sure how you tell the difference b/t 'sawtooth' patterns and exacerbations. Can anyone help me understand how I know my son is not at the bottom of the saw tooth vs in a complete exacerbation? Also, he has had a difficult week with increasing seperation anxiety and rages but this morning I realized he has a mouth full of sores and one in each corner of his mouth on the outside. I think I have read that can cause exacerbations but can you do anything for it? I have him using Listerene and a numbing spray from the dentist Ameseal). My dtr has pink eye and was wondering if that has any corelation to my son with PANDAS and his increase in symptoms? Last question, I have read DAN in reference to dr's and was wondering what that stood for. Thank you very much. I am learning a great deal from everyone here and am very thankful for your willingness to answer ?'s Debby

I was wondering this myself. This is probably a dumb question..... but what would be done if a child's blood tests postitive for strep if they are already on antibitoics?

I can echo dcmom. We had a cliff of symptoms in June of last year when we put our dd on azithromycin. On the 10th day (after commencement) we had a break-through where she finally could vocalize that she wanted to get better and then symptoms dissipated over the next month until by mid August she was 90% back to normal. In our own case, we kept a daily log and then a weekly log because outside of that time window it is impossible for us to "remember" what happened. In addition my dw would mark major events on a calendar. When we plotted the last 75 weeks, there is a noticable ramp and decline in symptoms. We plotted each symptom on a 1..10 scale (emotional lability (raging), lashing out (physical striking), measurement rituals, skipping meals, contamination fears, hallucinations, suicidal vocalization, obsessive questions, handwriting anomolies, ...) where 2-3 meant it happened but was irradic. 4-6 meant it was consistently present, 7-10 it was disabling. The contamination fears and rituals are the easiest to see as disabling -- they basically intrude to such a degree that they prevent doing anything else for the typically 1-3 hours that the symptom is present. The sawtooth pattern and episodic nature was really clear when plotted against this 75 weeks. Symptoms +/- 30 points over 10 weeks -- looking in retrospect very sawtooth. Regards, Buster Tmom thank you very much! Your post was extremely timely. My son has been on Augmentin since 9/23. The dose was increased significatly 3 weeks ago (from 250mg / day to 1750 /day). We have seen significant improvements but he had an all out rage this afternoon while we were at karate. (I honestly did not know how I was going to get him home.) I start to lose sight that yes it was a difficult afternoon but this is still progress because we have only had a couple of rages this week. I love Buster's idea of plotting the symptoms on a scale of 1-10. I think a scale will make it much easier to see trends. I am so appreciative of all the posts on this site.

Hi Susan, I am so sorry to hear about your experience today with the nurse. I know it is so disappointing to wait for an appointment that you think will offer help and it to be changed. Could you get an e-mail address for the DR?

Hi, my son's score was 156, however, he had been on Augmentin 250mg /day for about 5 weeks prior to the blood draw. I would say at the time the blood was drawn his symptoms ranged from mild (tics) to moderte (anger outbursts, fine motor and gross motor chagnes, attention). Hope that helps.

THANK YOU! THANK YOU!!!! Last night he was having a very difficult evening and I gave him an Advil (not easy to persuade an 11 year old to do in the middle of an anger outburst) within an hour he was much calmer....and wanting to be around the rest of the family . Usually when he has an evening like last night he wants to be left alone. I am not sure it was the Advil but will definitely try it again.

Thanks for the reply. Does the Advil work by reducing swelling in the basal ganglia?

I don't think he has such a drastic uptick in PANDA behaviors with a virus but it has actually been a while since he has had a virus. Thanks for your response!

Thank you for your respnse. He weighs about 90lbs (11 years old). He seems average compared to the size of his classmates even though he is a year older than most of them. I think she did not start the steroid because when we went to see her for the follow up everything was great. The chorea and attention problems were still pretty evident but I think compared to where he had been she was seeing great progress on just the antibiotic. I definitely saw a huge improvement in his behavior (he was happy, joking, playful) when we started the increased doseage of the antibiotic. As for why she increased the antibiotic to that does....not positive but I remember her commenting that his CAM score was on the high side....not sure if that would be a reason to have a high dose or not. I feel a little foolish now for not asking that question.

I have been reading the posts in this forum since Aug and first want to say how thankfuk I am for this site! In the darkest nights I would read some of the posts and it would give me hope. I am posting for the first time to get some of your thoughts. I will try to give a brief background. My son has always been a quite, shy and reserved child with OCD tendencies. He began clearing his throat constantly when he ws 2. I thought it was because he had been taking an allergey medicine that was drying him out too much. Stopped the medicine but the throat clearing continued. He had chronic croup until age 7, reflux requiring treatment until age 10, frequent pink eye, and chronic strep. He was diagnosed with Tourette's (however Dr Latimer thinks it was the first episode of PANDAS) in first grade. At that time he also had severe speration anxiety. Getting him to school was a challenge each day. His OCD increased and he started having outbursts of anger. He is now in 5th grade and over the years the vocal tic (and new ones), OCD, anger and seperation anxiety come and go in intensity. Last spring (April 2009) he had strep throat and a sinus infection. Since then our lives have been turned upside down. He has intense anger outursts, irrational thoughts, new tics, difficulty concentrating, fine and gross motor changes, obsessess about germs the list goes on and on. When we would go to the pediatrician she kept recommending psych.... so we tried that. I came across PANDAS info in Aug. The pediatrician did sterp titers. Antistreptolysin O Ab was 463. I started looking for a dr knowledgable about PANDAS. He had another sinus infection 9/23 and started Augmentin500 mg 2x/day. There was also a huge spike in anger outbursts at this time so the psych increased the Abilify (7.5mg) and Clomipramine (75mg). He started the antibiotics and increase in psych meds within a day of each other. After a week I noticed an improvment. Since I thought it might be the antibiotics I asked the pediatician to continue the antibiotic until our appointment with Dr Latimer. We saw Dr Lattimer 10/22 and she increased the Augmnentin dose to 875mg 2x/day. He has been happy, relaxed and playing with kids in the neighborhood more than he has in a long time. We had a follow up with Dr Lattimer 11/6. She recommended starting to wean him off the clomipramine and staying with the Augmentin. He has been on the lower dose of clomipramine for 4 days. However, now I am starting to see the anger outbursts and irrational thoughts slowly increase. I am not sure if he could be getting sick, his body has adjusted to the antibiotics, or the small reduction in clomipramine could be the problem (even though it is for OCD not mood). Dr Latimer did tell us there would be set backs when he gets sick(I did not expect it this quickly) and we could look at a course of steroids when it happened. Has any one elses experienced this after being on the anitbiotics for about a month? I am use to him getting sick with no other symptoms except changes in behavior but that was always an indicator of strep.....but he is already on the antibiotics. Not sure if it is too early to contact Dr Latimer. Thank you for your help!