cara615

Thank you for responding. I just don't know what could be making my son's tics spike like this after we have had such great success with diet and methylation. In regulare cases of TS, tics don't spike as much with an infection. This is based on friends that I know that have children with TS that have had STREP infections.

Do you think he will return to baseline after the abx? We ar eon day 3 and its still bad.

So should we have treated with abx?

What does it tell you if your child tested positive for STREP but was asymptomatic. Does that mean he is a carrier? The only thing that made me get him tested for STREP was that his tics were increasing steadily over a period of a week. But if he is a carrier wouldn't the test be positive anyway? Should I not be treating with antibiotics? I am really confused. There was a time over the summer that I had his throat tested and he was neg for STREP. So I have no idea. All I know is that he is on day 3 of amoxicillan and the tics are still way higher than baseline. Baseline for us was untedectable ticcing. No one would ever know he had tics. We are waiting on blood test results to see if it could be PANDAS related but I am just completely lost as what to think at this point.

Twins are fraternal just did a swab on brother and it was negative. We took blood on my ticcer today. ASO, anti d-nase b, etc. week for results.

Twins are fraternal just did a swab on brother and it was negative. We took blood on my ticcer today. ASO, anti d-nase b, etc. week for results.

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We are getting a CBC with differential, Epstein Barr virus profile, metabolic panel, ASO, anti d-nase B, anti- streptomycin. Should we get anything else?

Getting blood work from Dr. Taz. I guess she is testing ASO, DiNase and other things. I'll let you know. Tics are still elevated loud and constant.

This is all such great information! my boys are twins (almost 6). one has had motor and vocal tics with mild OCD since about 3 years old. Looking back, I do not know if any of his "flares" were due to infection. He has had strep 2x in his young life. However, the flare that got us a diagnosis of TS/OCD/ADHD was in May. He was extremely severe. I did not know about PANDAS at that time enough to get a throat culture. Instead I just addressed his diet and methylation with a homeopathic MD. I was able to get his tics and behaviors down 99%. Fast forward to Nov. His tics spiked over the course of a week. I got him a STREP test and it was positive. he had no symptoms. He is on amoxicillan now and we may take some blood to determine how to proceed. He also had a stool test done that we are waiting on results for. Should be three weeks more for that and then we can see what types of bacteria are in his gut. my question is: since I suspect one of my twins to have PANDAS, should I suspect my other son to have it too? my other son has no tics, maybe some OCD (not sure if its just who he is) and no other symptoms. He is well adjusted at school. I think I am going to get my other son a STREP test this weekend too. Just to see..... Lastly, the next conference in Atlanta! I live in Atlanta!

So I'm dealing with PTSD!!!! YES!!! That is exactly what it is. Every time there is a slight increase in tics, I absolutely flip out. My husband thinks I am just a negative person always thinking the worst but its PTSD. WOW. never thought of it. i have it though.

Very interesting. Thanks for the heads up on the probiotic. I will go back to our original dose tomorrow and see what happens. I was not planning on giving him the NAC while he was on the abx because its just too many supplements for him right now. my main desire is to get rid of the strep and see what shows up in his stool. We should get those results in about 3 weeks. This has been torturous for us as a family (as i am sure everyone here can understand). This forum has been amazing and has connected me to some wonderful people. But most of all it has helped me seek out holistic healing which I think is half the picture with PANDAS. i don't even know if my son has PANDAS right now. I guess I need to wait and see what its like when the strep is cleared. right? As for long term abx, if it will help him recover I will do what I have to. I just don't want to destroy his immune system - but I get what you are saying. What are the alternatives. I have heard of OLE when killing off candida. Very interesting. It must have anti-fungal properties. I will do some research on it. Thanks for all your suggestions. I hope he is OK for school tomorrow. Its Friday so I may keep him home if he can't stop his vocals. They are very very loud and i would say over 60 a minute in bouts that last about 5 minutes long.

He got home from school and tics are pretty severe. Non stop Ah Ah Ah over and over. its tiring his vocal chords and he just wants to lay down and have me rub his back and calm him. Is this herxing? And if so how long will this last? Need to know if I should keep him home from school tomorrow. Thanks

One other thing. It never really "felt" like Tourette's to me. The gradual but dramatic increase in severity of his tics did not follow a normal waxing and waning pattern. Plus, our neuro said he had never seen such a severe case of Tourette's in his career. That put up a red flag to me back in may but I never pushed a pandas dx. I guess because he was newly diagnosed with Tourette's, it was too much for me to comprehend at the time. Now that I have 6 more months under my belt, I can see how it all makes sense now.

Thanks for all your posts. I do appreciate it. It seems from what I am reading that addressing the diet/methylation/yeast issues are very important regarding the outcomes. I am hoping that the healing we have witnessed over the past 6 months (without the use of abx) has helped to strengthen his immune system. i have increased his probiotic intake now to 50bill a day while he is on the abx. I don't believe that 10 days of amoxicillan will wipe it out so I am prepared for more rounds. But I will certainly get him rechecked at the end of 10 days. I would assume his headache is a herx reaction. Praying that the tics don't get worse. When we killed off the yeast over the summer he had die off with increased tics for 4 days and then flu like symptoms for one day. The next day his tics reduced dramatically. I have kept him on a maintenance level of GSE (grapefruitseed extract) since then to keep the yeast at bay. He is also on a low sugar anti yeast diet, GFCF and corn free was well. He gets a Methyl B complex, glutmaine and we also give him NAC (1200mgs) for help with detoxing. All I can do at the moment is pray.

I'll keep you posted. This morning was his second dose of abx and hardly and tics this morning. He complained of a headache though..... maybe that is herxing??

I'll keep you posted. This morning was his second dose of abx and hardly and tics this morning. He complained of a headache though..... maybe that is herxing??

Ok I just read the ivig post on here and it's very interesting as to why it doesn't work in some kids. I will take all this under consideration while working with Dr. Taz. Does anyone think I need to travel to see one of the 4 doctors that everyone refers to on this forum?

We have had tons of blood work that tested levels of vit, minerals, neurotransmitters, amino acids, candida, etc. he wasn't methylating. We gave him methyl b complex and we killed the candida. He is also low in vit A, C, E and we ate supplanting. Our MD is a Pandas specialist. She is listed as the doctor to go to in Atlanta on the pandas network webpage. I feel we are in good hands. I understand what the abx are for and also about herxing. The thing is, my son had a severe flare up in May and through diet and sups and addressing his methylation and candida, I almost had him tic free until he got re infected with strep. I'm hoping I helped heal his immune system a little over the past 6 months. I will opt for ivig over prophylactic abx because taking an abx for many years will destroy someone's immune system anyway. It just doesn't seem like the way to go IMO. I'm sure others may disagree. I'm still learning but I have hope that we can get past this.

Thank you for this. I will keep you posted on how he does on the abx. I will also keep IVIG as a strong option, if in fact he does have PANDAS. Is three years a long time to do undiagnosed?

Hi! I have posted here before but now I have some new information. Brief background. Almost 6 year old son presented with vocals when he was 3.5. The tics came and went (not sure why and don't remember if antibiotics were involved). This past March the tics gradually increased until they were SEVERE. Motors, vocals, very intense and almost constant. They peaked in May. We got a TS diagnosis with OCD/ADHD and Anxiety. i started treating him with diet changes, antifungals (for yeast overgrowth) and vitamin supplements via our holistic MD, Dr. Taz here in Atlanta. The outcome was pretty successful because by the time Kindergarten rolled around, his tics were barely noticable. During this time he has NOT been on any antibiotics at all, just natural gut healing. I got strep in September and slowly his tics started creeping back. They peaked this past week (not as severe as May but pretty loud and many different vocals and motors). They are also pretty contstant throughout the day. His OCD behaviors are not too bad. Anyway, this past weekend he had a runny nose but otherwise was fine and has been in school this week. I took him to the pediatrician (our normal one) for a height measurement (completely unrelated to the tics) and on a whim decided to get a culture. It came back positive for STREP and the ped was astonished that he had no symptoms whatsoever. She asked how his tics were and I said terrible and she said, I bet he has PANDAS. Meanwhile, we are waiting on results of a three day stool study that I did on my son through Dr. Taz. We should be able to tell what types of bacteria and yeast are living in his gut. I know I need to do blood work to confirm PANDAS right? Do you think this could be PANDAS? I was under the impression that you need an ACUTE and sudden onset of symptoms and my son's symptoms have been gradually getting worse this past month just like they gradually got worse back in March of this year. Anyway, he is on a 10 day amoxicillan regimen to see what happens to his tics. What should I expect from these antibiotics? thanks for reading and taking the time to answer. We are in great hands with Dr. Taz as she is well versed in PANDAS and we will do whatever is necessary to help our son. Just praying its not too bad

I know that prolonged use of antibiotics can cause an environment where yeast can grow. Have you explored candida overgrowth and possibly going on a antifungal treatment to rid yourself of it? You should go on a special diet that starves the candida while on the antifungal as well. I know that yeast can product toxins that can cause neurological damage so maybe its something to think about.

Chemar - i read that most people with TS do tic when they sleep. My son does not, but I thought it was very common. I'll try to find the literature I read on it.

Just remember you have to read EVERY label to make sure the allergens are not included. Its hard work but it gets easier once you get into a routine and know your "go to" brands.