tygertoo

how old is your son? My son has been on Augmentin 400mg 2x daily - he is 8 and weighs 60 lbs.

Hello everyone! what is the longest someone has been on a daily abx? My son is going on 70 days with the hope of going on a prophylactic dose soon... also when is it time to go on a prophylactic dose...70%, 80%, 90% better?? Just wanted to get some others experiences... Thanks! Karen

My son has tics and OCD - he has been on abx for 60 days (this is the only treatment we have done other than therapy). CBT has helped quite alot in dealing with the OCD but the tics are tough because as it was described to me (an itch that they have to scratch). My son does a great job while at school in controlling them but when he would get home it was a tic fiesta (release of the tics). now 60 days in with the abx, his tics have decreased dramatically along with anxiety...some ocd hanging out but really not bad...alot of question asking and some small rituals. The one thing that seems to help his tics tho when they flare (especially when he plays baseball) is a dose of Motrin...works like a charm, I was amazed! Dr T says that he can be on Motrin daily if it helps...I don't do that but before a game he gets his dose to keep the tics at bay... Good luck and hang in there! Karen

We tried the bed wetting alarm (our insurance covered it) for my son (8). He also had bouts of chronic and sporadic bedwetting. The alarm worked for the most part for a while but we always went back to bed wetting. This spring we got the PANDAS diagnosis and he was put on azith. My son had very high strep and myco plasma (walking pnuemonia) titers. About 5 days into the zith - no more bedwetting (2 months later). I have read a few places that the myco plasma has something to do with chronic bedwetting. However if your son does not have high titers for myco plasma P then the alarm is worth a try. Good luck!!!

my son started around the same age as yours....mainly tics and OCD behaviors - also some separation anxiety issues/somewhat immature for his age and chronic bedwetting. No problems in school - the teachers never could tell. Never any rage issues. He also never had a "diagnosed" case of strep but did get pneumonia yearly (walking pneumonia). Otherwise very healthy - other than an egg allergy. He is now 8 and we have the PANDAS diagnosis. We had his titers tested and very very high in both strep and mycoplasma Pneumonia. I am new to this so I do not know all of the tests we have had and what they all mean - other parents would be better at explaining that. We took him to see Dr. K in Chicago and after meeting with us for 1 1/2 hours he said defiantely PANDAS. We are currently working with Dr. T out of New Jersey and have him on a course of abx (antibiotics) - three weeks of zith and now we started augmentin today. Anxiety issues much better and no more bedwetting ....still have tics and some OCD issues. I don't know if this helps but just b/c he has not had a diagnosed case of strep does not rule out PANDAS. I would talk to one of the Drs that most folks refer to. I can tell you that most of them are accessible via email or phone and will do a phone consult with you at the very least. Good luck!!!! Karen

Our probiotic has this in it (as do most probiotics). Does Dr. T recommend eliminating Strep Thermophilus entirely? I have read on this and from my research in theory it shouldn't be a problem, but it is a possibility. Here is his link that explains his thoughts on this subject http://pandas.yuku.com/topic/136/t/Strep-T...e-thoughts.html also here is the link for Flora Bears or you can get at whole foods http://www.renewlife.com/florabear.html

Yes he does...I found one at Whole Foods that does not have the strep T in it...it is called Flora bears.

Info I just received from Dr. T - just thought I would pass it along..... Since we last spoke, I've been reading about Strep Thermophilus (ST). This is a strep which is thought to be very benign. In fact, it's one of two bacteria used in the commercial production of yogurts and cheeses, including most of the ones favored by kids. Pretty much all dairy other than milk itself. Thermophilus survives the pasteurization process. Since most of us ingest lots of ST and seem to be no worse from it, it's undoubtedly benign to most everyone. But I would be cautious in a child with PANDAS or suspected PANDAS. If your son is a big yogurt and cheese eater you may want to see if there is some improvement of behavior with elimination of those from the diet. Milk and ice cream are OK (but maybe not frozen yogurt). Pizza is OK as well even though mozzarella cheese has ST as the high temperatures used to bake the pizza kill all bacteria. Just a thought - parents are always wondering about diet and behavior - for once here's a semi-rational reason to modify the diet.

Thanks everyone! - yes it is a bit overwhelming...I don't want to give him too much either. I have him on a multi vit; probiotic from Whole Foods (100b) and omega 3 (just standard dose). I will follow up with Dr. T and maybe his Ped to get an idea of what else to put him on... We do eat mostly organic and very little processsed foods (very very little things with food coloring) - it does help b/c when I slack a bit my son definately tics etc more..... -Karen

My son is 8 and weighs 60 lbs so I may go just under what you are doing....are the vitamins in addition to a daily multi? We are on our 3rd week of zith and supposed to talk to Dr. T this week. If he has significant improvements then we are supposed to go to maintenance abx for the next year...if no further changes then I think he is going to switch him to Augmentin for a while since he is fighting two infections (strep and mycoP). Dr. T wasn't sure if the azyth would take care of both.

thanks for the info! How do you know what dose to give?

You might want to post that in the question / answer section of Dr. Ts website. I wonder what he would say to that. My son's mycoplasma was 5.0 and 1377 - also strep titers were 1360...both very elevated...since being on azith - no bedwetting...and less anxiety. Still has mild ocd and tics. I read on a azith website (about the abx) - a man said that his prostate levels were very high and he had frequent urination at night and when he found out he had high mycop titers and went on zith - his levels went to normal and no more frequent urination. I tend to think that the zith is good for the myco p and we will be looking for another abx for the strep...just my observations so far....

my DS (8) has been on azith for almost 3 weeks - some things have been improving but I have seen in various threads other parents that have their children on extra vitamins, advil, herbs etc. What would others out there recommend putting their child on in addition to the abx and what have you found helpful and for what symptoms? we are still contending with tics and some OCD... Thanks!

my son has been on zith (200mg 2x daily) for 15 days so far...at about the 5th day his behaviors definately were worse (more tics, ocd etc)...but at day 15 we have seen improvements in some areas and some no change. In 15 days we have had only 1 very small incident of bed wetting (this was almost a nightly occurance) and his anxiety has decreased quite a lot in some areas. Dr. T has him on for another 7 days and if the other things do not get better (tics/other smaller OCD issues) then he will be switching us to Augmentin... if they do then we will be going on a maintenance dose of Zith. What I am hearing is that an exhasbation of symptoms is not uncommon so hang in there! We will be testing my son's titers in 6-8 weeks (he is very high in strep and myco plasma) and see if there has been a downturn in his numbers.

He was tested by western blot and was negative...he had his first case of pneomonia when he was 10 months old and was hospitalized...get mycoplasma P yearly (sometimes twice a year)...never had strep tho...but his titer levels were high. still digging tho!! just not sure what to do next.

My son is 8. His symptoms are mild in comparison to others on the forum thankfully. He began having tics when he was 4 and diagnosed w TS at 6. His OCD really kicked in at 7 - had issues w germs, choking on food, tactile issues, switching lights etc. We have never had any issues in academics he is ahead in all subjects, he plays sports, is social BUT is on the shy side has a little bouts of separation anxiety and socially a little immature. But is very living and even tempered. We currently take him to therapy every 2 months for Cognitive behavior therapy which has helped alot w the OCD. Right now we are pretty symptom free other than some mild ticking and occassional OCD things. We do have issues with bed wetting if we don't wake him up in the middle of the night. Dr K really feels IVIG wld be best. I am nervous about that. I have heard from many people that he is very good and we are in good hands but still have my own concerns. I really don't understand the test results other than they are elevated and some people talk about the Cunningham test?? I will have my DD tested (she is always sick w a cold so wldnt surprise me if she is a carrier) and my husband. I just finished w 30 days antibiotics bc I was recently diagnosed with a form of Lyme disease. I'm just trying to put all the pieces together.

YES!!! Get throat cultures on everyone in the family to check for carriers. Have you read these? flowchart: http://www.latitudes.org/forums/index.php?showtopic=6688 and FAQ: http://www.latitudes.org/forums/index.php?showtopic=6266 Thank you for the links! This is all so overwhelming and I feel like I am swimming with questions and concerns....I wanted to try antibiotics first but Dr K says that it will not work long term and that IVIG is the best route....the IVIG concerns me and was wondering about peoples experience with it... I was hoping to get some personal experiences...I've seen posts on getting tonsils out....food allergies exasberating symptoms....antibiotics...IVIG....it just seems to go on and on... Thank you to everyone and I appreciate any guidance as we begin this journey.

I am going to just share my experience and defer to the experts for the clinical part....my 8 year old son began to have tics when he was about 4....it morphed into complex and verbal tics and thus he was given the TS diagnosis. When he was in 1st grade, he began showing OCD symptoms...similar to your son. turning on and off faucet/light; tactile issues with socks and tags; repetative statements; rubbing his hands etc. he had stomach aches due to anxiety issues while at school; afraid to eat certain things (choking or too chewy); afraid to wear certain clothing/colors. we have been taking him to therapy for the past year for Cognitive Behavioral Therapy...I can attest that it definately helped him cope with his symptoms. We just found out that he has a diagnosible case of PANDAS. He has never had strep throat but did have chronic Myco Plasma pneumonia. His step and myco plasma P titers are very high and with that and his symptoms it has been determined pandas. we are continuing his CBT therapy while exploring Pandas. Good luck and I wish you and your son the best...

Hello all...well after waiting for a few weeks I received the results for my DS.....his Anti Dnas B titer was 1,360...Mico Plasma was 5.0 and IGM was 1377. Does anyone have thoughts on these results? Also, Dr. K said that the next logical step is IVIG along with antibiotics...can anyone tell me of their experience with this? Should my family be tested for Strep as well? We are still getting a handle on all of this and would love to hear from others.... Thank you!!!

I emailed Dr. K and he did order the Myco P test...so it is just me being a "newbie" to all of this. I just want to make sure all of the Ts are crossed etc. So now we wait for the results. Thank you to everyone for the responses....this forum has been a wonderful thing to find and very comforting for me that we are doing the right thing for my son!

Hello vickie No my son is not on anything right now...we are supposed to do a blood test next (right now testing for strep and Lyme). My son has had mycoplasma pneumonia yearly since he was hospitalized at 10 months old (he is currently 8). Dr. K told me that only speculation exists currently with the connection of mycoplasma p and Pandas...so I am still a bit confused since he mentions PITAND on his website...can anyone help out there to clarify?? Thank you!!

Hello vickie No my son is not on anything right now...we are supposed to do a blood test next (right now testing for strep and Lyme). My son has had mycoplasma pneumonia yearly since he was hospitalized at 10 months old (he is currently 8). Dr. K told me that only speculation exists currently with the connection of mycoplasma p and Pandas...so I am still a bit confused since he mentions PITAND on his website...can anyone help out there to clarify?? Thank you!!

One other thing...is it possible for a tick to cause any of this? I recently found out I was bit by a tick (ehrlichia chaffeenis) I do not know when and is even remotely possible that could be causing this for my son - somehow I passed this to him? I may be reaching, but I want to look at all possibilities...

My DS (age 8) was diagnosed with Tourettes and OCD. He has alot of the "tell tale" signs of PANDAS beside tourettes/OCD. High anxiety, poor eye contact with people his is not comfortable around, immature at times, bed wetting. He is a very high functioning little boy in school who is very sociable with his friends and plays sports. We have never explored medications with him but he does go to therapy (which has helped him cope using CBT). the question I have is he has never had Strep nor has anyone in our family. However, he does get pneuomonia (micro-plasmic) yearly since 10 months old. We just took him to see Dr. K in Chicago Friday and he feels that my son has PANDAS. Since we are new to this, what are the thoughts out there and any advice from parents? We are getting some blood work done next and then will be looking at doing a steroid burst when he has a large episode (which Dr. K believes will be this fall). Then if it is confirmed this way looking at IVIG?? Thank you everyone!!!