tygertoo

My son did this all last school year (he was in 3rd grade). We put him on a behavior plan with the teacher and school social worker where he was only allowed to go 3 x a day then reduced it bi-weekly. He had to bring a folder home that the teacher and he filled out along with a ranking of his anxiety every day. He also had a "bus buddy" that would walk with him to the bus - he was very anxious about riding it b/c he thought he wouldnt make it home. If he had a lot of anxiety he was allowed to leave the room when he needed to go and speak with the social worker. he also was given a special chair (which the other kids thought was cool) so it gave him something else to focus on. We started him on zoloft this year just before school and the frequency issue is gone and no anxiety....we had a spitting issue this year but quickly corrected it within a week by doing the daily reporting again.... Good luck I know it can be so frustrating!!

I have not posted in quite a while but my son is more on the PITAND side - he had very high strep and myco P titers. He has been on abx (different ones and dosages for just over 6 months). His most recent blood work has shown that his strep titers are now within a fairly normal range while once he was well over 1000 on his antidnase test. With that some major improvements in his separation anxiety, panic attacks, fear, tics, OCD etc. However we still are having some symptoms that come and go or are just on a more minor scale compared to where they were 6 months ago (still some bed wetting; some minor OCD and some small tics) But overall a lot of progress. His Myco P titers are still very high (over 1000 for current infection and <5 for prior). We just put him back on a daily abx(zith) but I was just curious if anyone out there has had any luck getting rid of this darn thing...it doesn't seem there is much research on the PITAND side of things. On a side note, he has not had IVIG and we are not considering this because of the wonderful progress he has made on the abx. Thanks everyone and I hope you all have a wonderful holiday and may God bless you and your families. Karen

I have not heard of one but if anyone knows I would love that information as well!! We are currently doing email and phone calls with Dr. T. Karen

Something similar happened to me - the lab ran the wrong test on my son. Call the lab to confirm which test they were supposed to run and/or call the Dr. to order the test...usually labs will keep blood for about 2 weeks or longer and can add a test.

The key with CBT is to enforce it daily/hourly/by the minute with your child....every time I catch my son doing something I confront him. We call them "worry bullies" so there is no negative connotation associated with it. When he has to do something methodical (so many times) and lets say it is 3. He is given the direction that he can only do it 2x or he can do it 4x but not 3. If he "tells on himself" he is only able to do it 3x a day and we have worked down to 1x a day. It is doing the opposite of what his "bully" is telling him to do or doing something different or throwing it in the "trashcan". It truly does work if you keep on it all of the time.... they eventually just disappear. We do this with all of his OCD habits...don't let them try and fool you though..he is smart enough to tell me that it is a tic when I know better! :-)

My son also has OCD (he has had OCD symptoms for over 5 years) and is currently on long term abx....while that has helped in many ways the OCD is tough to stop. What I am finding out is that even though you are reducing the inflammation and infection his brain has been trained to do things a certain way...so it is also undoing what he things is his "normal". So CBT has been very effective for us....he had been doing it weekly and now we just see his therapist every few months for a "reminder" session on his techniques he has learned...Here is a link if you are not familiar with CBT....we are not out of the woods by a long shot but I can say it is much improved. Good luck and hopefully the 2nd IVIG will help. http://www.helpguide.org/mental/obsessive_compulsive_disorder_ocd.htm -Karen

I have been reading threads on the forum and many of you have tried OLE and other herbs...I am looking for the best anti inflammatory and something that helps with removal of infection. My DS currently was on prophylectic dose of zith but due to some exacerbations in OCD and anxiety he is going back on full strength for 10 days with Motrin and possibly Augmentin if no change in a few days....however I would like to add some additional natural remedies. However in reading some of the threads I saw that you shouldn't put them together with the abx bc it could make the abx less effective? also if you use any herbal remedies, which ones, for what and dose for the age of your child. My DS is 9 and 60 lbs. thanks so much!!! Karen

I notice that my son also has increased tics when using his DSi or is on the computer too long or Wii. Luckily he doesn't use it all the time....anyone have any thoughts about the connection?

Dr. K gave first diagnosis and then Dr. T confirmed - my son has high myco plasma titers and antidnase b titers along with his other symptoms. He is currently on a prophelectic dose of zith and I would say that it took about 3 months or so to see a reduction in tics... Yeast luckily has not been an issue but he is on one abx at a time and also takes probiotics and fish oil. I also would give him motrin when the tics spiked and that would calm them down for the day at least (especially when he would play baseball) - they seem to spike under stress. the motrin also helped me confirm that what we were dealing with was PANDAS since it is an anti-inflamitory.

My son has tics (has for over 5 years)...we just received the PANDAS diagnosis in april. So far the zithromax and augmentin he has been on for the past 4 months seemed to have helped - they are not gone but it is down to a simple eye blink. My son deals more with the OCD symptoms these days but we use competing responses for both the OCD and tics. I have heard from many that the tics are the toughest to get rid of and one of the last symptoms to resolve... keep reading and asking....Good luck!

also forgot about the probiotic - Florabears http://www.amazon.com/s/?ie=UTF8&keywords=florabear&tag=googhydr-20&index=hpc&hvadid=3532817867&ref=pd_sl_931akbautj_b they also sell them at whole foods

Per Dr T - they do not have enough knowledge about myco p yet and it appears that it takes a very very long time to get the titers to go down....not good news for those that have kids with high myco P titers

I have found that anything is possible - my DS has had walking pneumonia 1-2x year since he was 10 months old (he is now 8) so the high myco P titers did not surprise me...however he has never been positive strep throat and his antiDnase B was off the chart. Also I never knew I had been bitten by a tick and due to symptoms I had was diagnosed last year with Erlichia Chaffesis....so keep asking for tests until you figure it all out! You go girl and don't give up!!

my DS has been on both Zith and Augmentin and now currently on prophelyctic dose of Zith (400mg 2x weekly). Yes both abx have helped with my DS symptoms (no more bedwetting, very little anxiety or meltdowns, much more social and adventurous (less fears) and fewer tics). The OCD is the hardest because it has now become like habit - the way his brain is wired...so we do CBT therapy with him which definately helps.

anything over 1.10 is positive and yes that would be your IGG (prior exposure). My DS is over 5.0 for his IGG and 1288 for his IGM (neg is <770) - along with strep at 680. I just wanted to mention what a remarkable young lady I think you are and you have really given the parents on this forum such valuable insight to what it is like to be actually someone that suffers from this horrible affliction but yet in the same breath can overcome so much!

Yes Dr T does stand by that theory. There are yogurts out there that do not have that strain of strep. I believe that go gurt may be one of them. Milk was ok - no issue w that. Good luck!!

Hello all! My DS (8) had original Anti DNAsB titers of 1360 and myco plasma IGM 1377 and IGG 5.0 He has been on abx (mix of zithromax - 2 weeks and augmentin for just over 3 months) that is all the treatment we have done other than CBT. His strep titers are down to 680 (which to many of you is still very high but for me it is a lot of progress!)...so I am thrilled. however his M pneumoniae IGM is 1288 and IGG still 5.0 Has anyone had any luck getting their myco P titers down? My DS was just put on a prophelectic dose of zyth 200 mg (2 tsp) every 5 days. He is pretty stable with just some small bouts of tics and OCD. I am just concerned about the myco P titers still being so high....

My DS (8) has had frequent bed wetting for many years and when we started his abx (zith) it went away after about a week and we have only had one bout of it since. My son has very high strep and myco P titers...I have read that there is a correlation between myco p and frequent urination.

I think we are going to try and get the school to pay for the social worker to take CBT training. There have been some unusual things approved by our school district for some kids (music therapy, laptops paid by the school etc)..so I think that CBT is not out of the question. We are having his therapist write a letter and also I am bringing journal articles showing how PANDA kids w/ OCD respond very well with continued CBT. I will keep you posted if we get our district to do this. I am still hoping to hear of a district out there that has done this.

Thanks Joanne! I was hoping to get the social worker at the school to do individual CBT with him a couple times a week outside of class. He is able to keep everything under control for the most part in class (we had issues in 1st grade - germ issues) but things have gotten better since then. Last year never heard of any significant issues from his teacher. When I told her about his OCD and tics she said she had no clue.... but I think that the more frequent CBT at school would be helpful overall...I just don't know how much of a fight we are in for. Luckily my husband is a special ed teacher in the district so maybe we can get some movement on this. I just wanted to hear if anyone else was able to get this accomplished. However I am interested in the behavior dollars....i am thinking that I would implement that at home. Would love more info on that!!

Thanks Joanne! I was hoping to get the social worker at the school to do individual CBT with him a couple times a week outside of class. He is able to keep everything under control for the most part in class (we had issues in 1st grade - germ issues) but things have gotten better since then. Last year never heard of any significant issues from his teacher. When I told her about his OCD and tics she said she had no clue.... but I think that the more frequent CBT at school would be helpful overall...I just don't know how much of a fight we are in for. Luckily my husband is a special ed teacher in the district so maybe we can get some movement on this. I just wanted to hear if anyone else was able to get this accomplished.

My DS (8) has OCD as one of his major PANDAS symptoms and he is currently going to the University of Michigan for CBT - however it is difficult to get him there and not lose 1/2 a day traveling - so I was wondering if anyone has been successful in getting the school to provide CBT for their child. He is currently not in special education (academically he is very bright) and only is in speech; however if we could do CBT at school a few days a week then we feel that it would benefit him greatly. Thanks everyone - looking for any feedback Karen

My son takes Flora Bears....you can get them online or at Whole Foods in the refrigerated vitamin section (under $15 bottle)

I live in Michigan and have not worked with anyone in the State as of yet. I have taken a trip to Chicago to see Dr. K and am currently working via phone and email with Dr. T. Many of the PANDAS Drs. will do phone consults and work with you and your pediatrician with regard to treatments. Good luck! Karen

I suppose it depends on each dr. I was bitten by a tick (parasite not lyme)and was treated for 30 days. ABX stopped due to no further symptoms...been ok for past 4 months.