BikeWP

Has anyone noticed if taking probiotics helps tics? I swear I have notice a little difference since I have upped my DS's dose. Thanks :-)

My DS is currently taking it. He is now up to 400 mg. We started the dose at 150 mg. I really am not sure if it makes all that much of a difference with my DS. It's hard to say because of the waxing and weening. The bigger the dose, the bigger the pill so we have been kind of fighting that battle of the the pill being too large to take (DS is 11). No side effects that we have noticed.

Has anyone had experience with the abx injection? If so, do you find that it works better then the oral abx? Thanks for your input...

Thanks for responding. It's almost like he is laughing through his nose. Short bursts when he is exhaling. Could this be what you were thinking? Will his PANDAS dr treat it the same? We are due to see him soon and was wondering if he needs to go back on abx along with another steriod burst? He just came off abx two weeks ago but has not had a steriod burst since Nov. The breathing tic progressively gets worse throughout the day. My DS is 11 and have been giving him 200 mg of Motrin lately. He's about 64 lbs. Thanks.

I would like to know as well as far as dosing goes for Motrin. My DS 11 flare is real bad right now and we don't return to see his doctor for a few weeks.

Has anyone experienced this... My DS 11 has been in a flare with his tics. He has this breathing tic going on. It was so bad right before we went to Mexico that his friends were commenting on the tic which has never happened before. We went to Mexico just last week and his tic completely went AWAY! GONE! The very next day we came back from vacation his tic started back up again just as bad as it was right before we left for vacation. What the??!! All I can think of is environment? Stress? Altitude? (We live in CO) Any ideas or experience with this? Thanks a lot.

Just curious here... How many PANDA DD's and DS's have been diagnosed with Celiac? Seems as though they both go hand in hand... I could be wrong but is there a connection? Thanks

Just curious here... How many PANDA DD's and DS's have been diagnosed with Celiac? Seems as though they both go hand in hand... I could be wrong but is there a connection? Thanks

I can't remember if I posted to you already but thought I'd shoot out a quick one just incase... We live in Niwot and found a PANDAS doc in Fort Collins. He is wonderful and knows his PANDAS!! His name is Dr. Steve Rondeau. The Wholeness Center. My ds was diagnosed with PANDAS in Nov and also has Celiac. Do you know of a support group in Colorado? Would love to get one together!! Take care.

Question for all you PANDAS Moms/Dads- My ds was diagnosed with PANDAS in Late November and with all the blood tests he had...as you all may know...his food allergies were extensive! We recently found out that on top of all the PANDA issues, he also has Celiac. The nutritionist says that she wants him on a "clean diet" for one month meaning NO foods he had a reaction to (which is 25 out of 90!!!). We are almost at the 30 day mark (yay!!! and wooohooo!!). Has anyone of had to deal with doing this? The nutritionist wants us to come back in to discuss how to reintroduce the foods he had to stay away from. Do I really need to go back in to discuss?? I feel like I am just handing so much $$$ over to the office these days and my insurance does NOT cover this at all. It's $95 every visit! YIKES I also feel like the blood tests for the food allergies came back crazy high due to his gut being irritated from the gluten. Could this be?? Another question I have is does PANDAS go away? It seems as though IVIG is the route most take. My ds has been on abx since the beginning of Dec along with the steroid (once) burst. The abx helps his tics somewhat but not all of them. I do feel like he is better on abx but he still has the OCD, anxiety and tics. His symptoms are not as extreme as most...soooo will the abx eventually help and go away??? Did we catch it early enough? DS has had symptoms since he was 7 and is now 11. The earlier you catch PANS the better??? Sorry for the rambling on....any advice and knowledge would be so helpful. THANK YOU SO SO MUCH.

Btw-he is a PANDAS doc! Yay!

Dr Steve Rondeau The Wholeness Center(970) 221-1106 He is located in Fort Collins. My DS is seeing him now. We really like him a lot. Hope this helps. We live close to Boulder and takes us about 50 minutes.

Hi I don't know if this post is a little too late but we live in Colorado, also. I found a fantastic PANDA doctor in Ft. Collins. His specialty IS PANDAS. His practice is called Wholeness Center and his name is Dr. Rondeau. 970-221-1106. I hope this helps!

Chemar- Thanks so much for all of your help. I agree, with the experience we have had with a Neurologist, they do not know a heck of a lot about PANDAS or even tic disorder for that matter. We went to see a Neurologist a few years back and they didn't mention anything about PANDAS. He said my son had tics...and that was about as far as we got with the Neurologist visit. Complete waste of time. I have researched PANDAS in the Colorado area and found a doctor currently on the medical advisory board of the PANDAS resource network. I have made an appointment with him. He is a homeopathic doctor that specializes in PANDAS. I am looking forward to meeting him. Thanks again. I so appreciate latitudes.org, I really do from the bottom of my heart. Thanks everyone for help. It feels a lot better knowing we are not alone... Hi Chemar My sons tests came back and was diagnosed with PANDAS! Thank you big time for all of your help on this. Starting his antibiotics/steroids today. Food and seasonal allergies were very high along with his strep test. I don't think I would have gone down the PANDAS path if it wash't for you and another helpful woman who replied. Thanks so much...

Hi Laura my son had sudden onset tics(blinking and eye rolling. He was diagnosed with pandas. Have you looked into this disorder yet? My sons tics have cleared with a tonsilectomy and adenoidectomy and long term antibiotics. Hi Blake's Mom I want to reach out and thank you tons! My son just got his tests back today and just was diagnosed with PANDAS. I don't think I would have gone down that path if you didn't give me the heads up. My son starts his antibiotics/steroids today. I feel a lot of weight lifted off my shoulders...I know we have a long road ahead but at least I feel like we can move forward!! Sooooooo....THANK YOU BIG!!!!!

His iron levels came back normal. Diagnosed with PANDAS. Starting the antibiotic/steroids today. Strep was extremely high along with his seasonal and food allergies. Low on mag and zinc.

Hi Laura my son had sudden onset tics(blinking and eye rolling. He was diagnosed with pandas. Have you looked into this disorder yet? My sons tics have cleared with a tonsilectomy and adenoidectomy and long term antibiotics.

Hi All I am new on the PANDA site. We just had my son tested for PANDAS today. Will take three weeks to get the tests back but was wondering with my sons tics and upset stomach, what probiotic would you recommend? Would like to find one at Vitamin Cottage or Whole Foods if at all possible. He can take pills so that is not a problem. Is PANDAS and sour/upset tummy common? Anything else I should know about, feel free to clue me in... Thank you so much!

Chemar- Thanks so much for all of your help. I agree, with the experience we have had with a Neurologist, they do not know a heck of a lot about PANDAS or even tic disorder for that matter. We went to see a Neurologist a few years back and they didn't mention anything about PANDAS. He said my son had tics...and that was about as far as we got with the Neurologist visit. Complete waste of time. I have researched PANDAS in the Colorado area and found a doctor currently on the medical advisory board of the PANDAS resource network. I have made an appointment with him. He is a homeopathic doctor that specializes in PANDAS. I am looking forward to meeting him. Thanks again. I so appreciate latitudes.org, I really do from the bottom of my heart. Thanks everyone for help. It feels a lot better knowing we are not alone...

Yes, I have Sheila's book and really think it is great. Thanks! Any other books you recommend? BTW, I made an appointment to see if my son has PANDAS... Thank you

Hi What are the chances of both my kids having tics? My son has had tics since he was about 7 (he is now 11) and my daughter is (recently) showing signs (eye rolling and clearing her throat) and she is now 8. Anyone else have this in their family? What does this mean? AAAAuuugh!! Gosh! I have made an appointment with a doctor about PANDAS to see if that is what it is. Would it be PANDAS if both kids have tics?? Thanks for your help.

My son's tics really increased when he was on Zyrtec. He had night tremors on it as well. My son has terrible seasonal allergies. I only give him allergy medication when his allergies are terrible. I feel that all antihistamines make my sons tics go crazy!!

Any suggestions on what to do next? Do I need to see a neurologist for PANDAS? What about Genetic TS? Do they test for PANDAS and Genetic TS? We did see a pediatric neurologist when my son was about 7, all he said was "yes, he has tics." It very well could be Genetic TS, I was adopted and have no history of my birth parents or medical records. Thanks so much for responding to my concerns, it sure does feel better talking to people who have gone through similar experiences. It is frustrating not knowing. I feel like we are doing all the right things...vitamins, eliminating dairy, organic foods, epsom salt baths, monitoring his sugar intake...etc...list goes on...and on.... THANKS MUCH!!

Hi I was wondering if tics and restless leg syndrome go hand and hand? My son is 11 and tics seem to be getting worse. We have stopped dairy and it really hasn't seemed to help. We are on all the supplements that are suppose to help but I have not seem a change. We have done blood work and nothing really sticks out... We really watch his food intake and try to eat organic as much as possible. His tics seem to bother him at night the most, when he is trying to rest. I have noticed, too that my daughter who is 8 starting to get tics. The eye rolling has started... Do Bonnie's vitamins help? We have tried Tic Tamer...NOT sold on that at all...I also bought the Tics and Tourette's book (natural remedies). I really need some help here...any comments would greatly be appreciated. I feel terrible for him, he is very frustrated and HATES his tics. We live in Colorado...any Dr's you recommend other than the natural ones?(we have tried them) Thanks for listening -Laura

Hi Everyone Question on Gluten please. My son just recently was tested (blood) and he came up having gluten intolerance. We are trying our best at getting him Gluten free but was wondering if anyone knows if the tics get worse before getting better when trying to ween off gluten? I am seeing an increase! Please if anyone could give me some in site, I would greatly appreciate it. Thanks in advance with any help, BikeWP