szcasey

Hi Tigger, I'm also relatively new to PANDAS. I believe half the battle is finding a doctor who understands, believes it exists, and can treat it. Based on what I've read and experienced, a lot of MDs don't believe it exists. I also learned about PANDAS by reading "Saving Sammy..." I went back through our records and my 7 yo son fits it to a "T." My two cents... contact Beth Maloney (via savingsammy.net)...she's very responsive, sweet and helpful... she also has a public FB profile with a list of MDs by state who treat PANDAS as well as a wealth of other info. I swear, I do not personally know her... I only know her through email contact... I've emailed her once with a ton of questions and she promptly responded. She's amazing! I'm still trying read all the posts here... there are many helpful people and MDs on this list!! Good luck and keep in touch, Sarah

Hi Doug, I'm relatively new to PANDAS so I can't answer your qx on PAndas. However, I had my tonsils out at 13 and I still get strep. I'm 41 and currently being treated with abx for strep. My advice is to get a second opinion. Good luck and best, Sarah

Hi Angela, I found Beth Maloney very responsive, sweet and willing to help. I asked many questions (including one similar to yours). I asked about Sammy's abx and if he was treated with steriods and here's her response: "Total of 4 yrs on Augmentin. 3 yrs at 2000 mg XR. Three more months at 1000 mg. Three months at 500 mg. Knew we could wean when we'd reduce ans symptoms didn't return No steroids." Again, she's very eager to help... If you want to get in touch with her, go to www.savingsammy.net and send her an email. She is absolutely amazing. Additionally, she has a public profile on FB, which includes (among other helpful info) a list of MDs, etc., by state who treat PANDAS. Best, Sarah

Hi Charlotte Mom, Chris' original treatment for Lyme was 150 mg Rifampin 2x day and 250 azith in the am. Chris did have a Herxheimer reaction for the first month (plus) while on the two abx for Lyme. But after awhile Chris was just so miserable, we figured something else was going on. We gradually stopped the Rifampin; first took the morning Rifampin every other day... then dropped morning Rifampin completely. While taking the Rifampin in the evening only, it was obvious that it wasn't working for Chris. After talking to Dr. Jones' office, we dropped the PM Rifampin (early November). We continued the 250 azith and saw huge improvements. By mid-December, we no longer had refills for the azith and didn't have insurance (while hubby changed jobs). Now we have insurance again, saw Dr. Jones on Monday and have our azith refills. So it's 4 days on azith (not 5 as I stated in my original post). The pediatric neurologist who diagnosed Chris with TS is Steven Wolf at Beth Israel Hospital, NYC... the neurologist we're going to see (who treats PANDAS) on 2.9 is Dr. Murray Engel, Stamford, CT (203.359.1790). I do not know if Dr. Engel works with Dr. Latimer... I'm new to PANDAS. I found this neurologist by emailing Beth Maloney, the author of "Saving Sammy, the Boy Who Caught OCD." Additionally, her FB page (a public profile) has a listing of MDs/alternative docs by state who treat PANDAS. You are going to LOVE Dr. Jones. He is absolutely wonderful. He's so thoughtful, brilliant and great with kids!

Charlotte Mom, My answer is sort of long... but I think relevant to your question. My son has TS and no OCD symptoms at this time. My 7 yo son is currently being treated by Dr. Charles Ray Jones a Lyme Literate MD in New Haven, CT. He is amazing! My son, Chris, started taking 250 mg of Azith in the am and 150 mg of Rifampin 2x a day back in August 2009 to treat Lyme disease. Long story short, we stopped the Rifampin as it makes Chris' motor tics a lot worse (noticeable 20 to 30 minutes after taking it). We stopped the azith for a month as well. Chris has restarted the azith (we're on day 5) and he's tic free. It's early to say if it's the azith as this could be the natural waxing and waning of TS. I do not know if the Rifampin/Azith is protocol for Lyme. After reading "Saving Sammy, the Boy Who Caught OCD," I went through Chris' medical history. Chris had rapid onset motor tics begin in 10/2007. Five months later he developed a strange rash that our MD (not Charles Ray Jones) didn't diagnose. I'm wondering if the rash was scarlet fever or rheumatic fever. Six months after onset of symptoms, Chris was treated with augmentin for a strep infection based on ASO. While on augmentin he was tic-free. I should mention that we get strep a lot (I'm currently taking abx for it) and each time on augmentin, Chris has been tic-free. I wonder if my son has Lyme and strep. We're going to see a neurologist on 2/9 who understands and treats PANDAS. I think I'll know in a week or two whether or not the Lyme treatment (now only azith 250 mg 1x per day), is actually stopping the motor/vocal tics. Hope this convoluted response helps... -sarah

Karen, I LOL about your comment on the Touch and Brush dispenser. My two kids would LOVE that germy device. Talk about effective marketing to children. I also cannot imagine brushing teeth in the kitchen. And what about flossing? We use a Braun Oral B electric tooth brush with rotating head. The holder also is a breeding ground for germs; I bleach it every day. I think I'll try washing the heads in the dishwasher and hope they won't melt. The heads aren't cheap. One advantage of the electric toothbrush (in our house anyway), is that my kids (7 yo and 10 yo) love the electric tooth brush. I don't have any trouble getting them to brush their teeth for two minutes. I love the idea of putting the brushes in the dishwasher! Thanks for posting

MomtoCole1, We also have had sleep issues (frequent waking, nighmares, not wanting to sleep, bedwetting, wanting all lights on, etc.). Sleep issues are worse when my 7 yo son's motor tics are very bad. I must say that even now, while his motor tics are pretty mild and he no longer has obvious sleep issues, he complains of being tired and looks tired. We also have used Melatonin (2 mg) and have had some success. You can find it in capsule or liquid form. Another thing that helps my son relax are epsom salt baths. We put a half a cup in the tub with very warm water and it helps relax him. Some people use more espom salts in the bath but if we use more my son's skin gets very itchy. HTH and hang in there! Best, Sarah

UGH... I'm still getting used to posting here. I posted my first response in the wrong area!! I somehow only responded to EAMOM. Here it is again... Thanks so much for your responses, EAMOM, Vickie and T.Mom! I appreciate your comments, links and suggestions!! EAMOM, Chris is currently being treated for Lyme Disease; he's been on abx since 9.2009. He's taking azithromycin 250 mg in the AM and Rifampin 150 mg in the evening. 20-30 minutes after Rifampin, his motor and vocal tics are a lot worse. After azith, his tics seem to subside. We actually have a follow-up with his Lyme literate MD, Charles Ray Jones today. He has been treated for strep in the past (Chris and I get it a lot). He's tic free on augmentin but I don't have the dose. I believe that he had Rheumatic Fever in 3.2008 five months after the sudden onset of motor tics. I have pictures of the rash and never made the connection between sudden motor tics and strep until "accidently" reading about PANDAS. I'm currently taking abx for strep and I've noticed that Chris' motor tic is a bit worse in the evening. He's not showing symptoms of Strep but now I am thinking that he may have it... I made an appointment for 2.09.10 with Dr. Murray Engel a neurologist in Stamford, CT who treats PANDAS. Fingers crossed! Again, thanks so much for your comments! Best, Sarah

Thanks so much for your responses, EAMOM, Vikie and T.Mom! I appreciate your comments, links and suggestions!! EAMOM, Chris is currently being treated for Lyme Disease; he's been on abx since 9.2009. He's taking azithromycin 250 mg in the AM and Rifampin 150 mg in the evening. 20-30 minutes after Rifampin, his motor and vocal tics are a lot worse. After azith, his tics seem to subside. We actually have a follow-up with his Lyme literate MD, Charles Ray Jones today. He has been treated for strep in the past (Chris and I get it a lot). He's tic free on augmentin but I don't have the dose. I believe that he had Rheumatic Fever in 3.2008 five months after the sudden onset of motor tics. I have pictures of the rash and never made the connection between sudden motor tics and strep until "accidently" reading about PANDAS. I'm currently taking abx for strep and I've noticed that Chris' motor tic is a bit worse in the evening. He's not showing symptoms of Strep but now I am thinking that he may have it... I made an appointment for 2.09.10 with Dr. Murray Engel a neurologist in Stamford, CT who treats PANDAS. Fingers crossed! Again, thanks so much for your comments! Best, Sarah

Hi everyone, I'm relatively new to this forum. A brief introduction... I have a 7 yo son who had sudden and debilitating motor tics begin 10.9.07. The tics caused his entire body to thrust forward and he'd often fall. Other symptoms included a new fear of going to bed at night, frequent night terrors, some bed wetting, frequent rage episodes and separation anxiety. We went through all sorts of tests to rule out cancer, tumors, seizures, etc. We had allergy testing done and removed all food allergies/intolerances and added supplements and the tics improved. In March 2008, he developed a strange rash his trunk and the MD never diagnosed it. In April we had blood work done which showed a strep infection and he was treated for strep. No tics were apparent during antibiotic treatment. Fast forward to 2009... vocal tics begin and we get the TS diagnosis. I've read contradicting (and confusing) information about PANDAS. Can motor tics and/or OCD caused by PANDAS be cured? Can PANDAS be cured? Would love to hear stories and would appreciate any advice. I've just read "Saving Sammy, the Boy Who Caught OCD" by Beth Maloney and it's really given me a lot of hope for my son. I highly recommend her book. Thanks in advance. Kind regards, Sarah

Thanks for your response, Flower. Sorry it didn't work and good luck! Best, Sarah

Hi, I can't answer your question about B vits but see that Chemar has. Thought I'd share our tip about getting our kids to swallow pills. It really worked wonders for my two (at the time my youngest was 5). Start by cooking pasta noodles (one like a tube, that's hollow in the center); a little overcooked works best. Cut the noodle in a quarter (work your way up to a half noodle depending on size) and have your child practice swallowing the quarter noodle whole. Then put a pill in the halved noodle and have them try swallowing w/o chewing. It does take practice. But it works. I've heard that some have practiced using empty capsules... not sure where to find them. But maybe another option. Good luck; hope that helps. Best, Sarah

Hi, We had IgG testing done for my then 5 yo son (he turns 7 today) and removed the foods he's allergic to (dairy, gluten, eggs, soy, apples and strawberries) and saw a huge improvement. However, his tics have slowly been returning. He's very frustrated, especially by the vocal coughing tic. Ameecram, what are you doing to treat your son's leaky gut? At the suggestion of our GP, we were using aloe vera juice and MSM but we're currently on a break from it. Would love to hear what you're doing and how it's going. Thanks and best, Sarah

Hi, I just ran into an ad for Tic Tamer and am wondering if anyone has tried it for the recommended 6 weeks? I would like to try it on my 7 year old son but am weary of adding yet another supplement. Thanks so much!

Hope everyone is enjoying their summer. We've "managed" our 5 yo son's TS with a modified diet. We've eliminated foods he's allergic to (milk, eggs, wheat, soy, strawberries and apples), MSG and food dyes. He was tic free for over 3 months. Chris began ticcing recently and I wonder if it's due to chemcials he's been exposed to at camp. He's attending camp at a local school and the carpets are being cleaned and walls are being painted. I provide his food/snacks and he's very good about his diet. Additionally, he's very angry and moody. I really feel for him! He doesn't talk about his symptoms -- maybe he's too young to articulate/connect his anger w/ the symptoms. Maybe the chemcials have nothing to do w/ the symptoms... maybe it's just the waxing and waning of TS. Has anyone else experienced chemical reactions? Any suggestions for treatment? I could remove him from camp, but I'm sure he'll be exposed another time in the future... I was so hopeful that we had a handle on his TS symptoms and really didn't want him to start kindergarten twitching and ticcing all over the place. Thanks and best, Sarah

Hi Greyhound, I'm new to this board... We're managing my son's TS symptoms through dietary changes, supplements and seeing a chiropractic neurologist. Have you looked into possible allergies or tried an elimination diet? After reading "Is This Your Child" by Doris Rapp, MD and "Why Can't My Child Behave" by Jane Hersey, we began a version of the Feingold diet. No MSG (sometimes it sneaks in as it has many names), dyes and artificial flavorings. We then started one of the elimination diets mentioned in Doris Rapp's book and found that our son is allergic to eggs, so we stopped giving him eggs (which he LOVES). We saw a huge improvement. We had allergy testing done (IgG blood test) and found that he's highly allergic to milk and eggs; has a slight allergy to soy, strawberries, apples, oats and wheat. I truly understand your frustration. My son had very severe ticcing... now we only see slight things on occasion -- no one notices. Just a thought. Good luck and best, Sarah