MMC

Hello Samra, I am sorry to hear about your son. I know what you are going through and I know what your son is going through. It is very difficult. You will be hard pressed to find a doctor in the Raleigh/Durham area who can help with PANDAS. Our primary neurologist is in Charlotte and we have seen doctors in DC and Maryland. For some reason, I got way more attention back in '72 than either of my kids can get now...meaning, I was hospitalized (twice) and a battery of tests run. The only treatment I really got was the bicillin shots and Penicillin antibiotics, which were prophylactic in nature, preventing strep. I just outgrew most of my symptoms, which were mainly tics/chorea. So, today I am 90 to 95% symptom free. Currently, we are pursuing Lyme treatment for our son, who is 12. We are hoping to kill any Lyme or tick borne diseases he may have or other co-infection, and hope he will see improvement in the future (6 mos to a year most likely). He falls into the PITAND diagnosis as well, which means any infection can trigger PANDAS symptoms, not just strep. But strep is what set it off for him, and our daughter too. PANDAS is a hard condition to treat. Even the doctors who understand PANDAS, don't always know what will work as each child is different. I really wish I could give you a doctor in the area that is good with PANDAS, but I just don't know one. My wife is a member of a PANDAS support group in the Raleigh area. Send me a PM (personal message) from this forum and I will have her get in touch with you. You can learn more from the moms in this group, and I am hoping they can give you some info about area doctors.

Susan, our LLMD prescribed our DS cholestyramine. It's a binder powder that lowers cholesterol, but also helps detox. He said it works better than bentonite clay...although, we never tried the clay, so cannot compare. But, we think it is helping. He takes it in juice once or twice a day on an empty stomach. We also give liquid Advil in the morning. This combination has helped...no more headaches or fatigue spells. I like the cholestyramine b/c it is a prescription. With our insurance, it was only $15.00. It comes in a box with 60 individual powder packets and will last almost two months b/c he mostly takes one packet a day.

I am going to make my own damminix type tubes and spread them around the yard and edge of the woods. We are on 2.5 acres, so it would be very expensive to buy the real thing. I will save paper towel rolls, soak some cotton balls in permethrin and place them in the tubes. I even found a website that briefly describes how to do this... http://www.pestexterminator.com/how-to-get-rid-of-ticks/ "You can purchase or make your own tick tubes for another do-it-yourself pest control tip. Fill cardboard tubes, like paper towel rolls, with a few cotton balls dipped in permethrin, a synthetic chemical. Any mice in your yard will come to the cotton to build their nests. The ticks that use those mice as a host will ingest the chemical and die, leaving the mice unharmed."

I'll be buying Permethrin soon. This for use on clothing and shoes only, NOT skin. I soak my hunting clothes and boots in this stuff. Since we're more aware of Lyme now, I will be applying it to our familiy's shoes and socks also. I wear rubber gloves when applying it. Once it dries on clothing, it does not contaminate skin and does a great job at repelling ticks. Lasts for 6 washings, then re-apply. You can find it at REI and BassPro... http://www.rei.com/webservices/rei/DisplayStyle/768970?source=gpla&preferredSku=7689700016&cm_mmc=cse_froogle-_-datafeed-_-product-_-7689700016&mr:trackingCode=5E8D4FFE-FB85-DE11-B7F3-0019B9C043EB&mr:referralID=NA

Thanks Nancy and Fixit. Was on abx for a total of 12 years or a bit more. Stopped pen vk around 19 or 20, early college. Don't think I have experienced any bad side effects from the abx. I do have acid reflux and have to stay on med for this (for about 12 yrs now). Not sure if this is related or not...am guessing not. I'm sure this question will be there with our kids, how long to stay on abx. I have heard some say until late teens is best, to protect from strep, then as you get into adulthood, strep is less of a problem. Ok, I know the next question...have I had strep since stopping abx? I only remember testing positive once and it was a faint positive...about 10 yrs ago. Other than that I don't think I have had strep since I was 7. It's more common in the pediatric and school years, right? If I got strep, would PANDAS symptoms return? I don't know. I still have some tics and slight OCD now...the 5% that is left over. I also have some Lyme like symptoms. I may seek treatment for this. We have just started ds12 with Lyme treatment, as he has been clinically diagnosed with Lyme. (Or at least some type of co-infection). Guess what his main abx is at this time...bicillin injections. It was hard for me to take him into the doc on Monday for his first shot...he didn't like it either. Dr Beals prescribed 6 total, one a month. And for now, he is also on 500 augmentin a day, and diflucan. We are hoping this new treatment protocol will help. If not, at least we tried. His local pediatrician said he will probably just have to wait out his symptoms like I did (doesn't believe he has Lyme). We will see. Oh, and you want to know why I took him in for his first injection instead of his Mom... Well, Mom had confirmed strep. Had it bad. Isn't life weird. Thankfully, the kids and I have not had any strep symptoms. Mom got on abx quickly. Kids are already on them of course, and yes I snuck a few zithros for a couple of days.

Fixit...there was not a decrease in movement disorder symptoms upon starting bicillin injections (that I am aware of). My symptoms decreased a little each year, and really started decreasing at puberty, which was between 12 and 13 if I remember correctly. Then, decreased year by year, until almost gone at 18. Sorry to be so vague, but there was no charting of symptoms and that was a long time ago...and parents are deceased. I did not do daily abx at onset. I immediately started the bicillin, while I was at Duke. I was there about 10 days for observation and tests, including a spinal tap, a few eeg's and gobs of questions by physicians and interns. Close to the last day, I got my first shot...in the rump...and it hurt and I did not like that nurse one bit that gave it to me, I do remember that much. I don't remember symptoms flaring with viruses or such, but they could have. This certainly happens to ds12 (PITAND), but not so much with dd15. An oh, I actually went back to Duke when I was 17 for a couple of days for more testing, and this is when they said to stop the bicillin injections and started on daily abx. If only our PANDAS kids could get this much attention these days? What happened?

Fixit...started bicillin shots at age 7. Received them monthly for 10 years, until 17 or 17 and a half, somewhere in there. I felt funny after a shot one day and they were concerned I may have had a reaction, so this is when I started on oral abx. Once starting Pen VK, I stopped the shots altogether. Yes, I think you are right, very fortunate to have gotten the abx. I never got strep again after the age of 7, so this obviously worked. This started way back in 1972. The doctors at Duke knew what Sydenham's Chorea was and this was the diagnosis. I had a very supportive small-town country doctor...he was also known as a brilliant doctor and had good connections at Duke. He personally gave me the shot every month for 10 years...it cost $8.00 each visit. Compare this to today...all the insurance mess, all the naysayers about PANDAS. We took our daughter to Duke 10 yrs ago when she started showing signs of PANDAS. They said it's just tourettes. We said, no it's not...b/c I had SC, which now would be more accurately described as PANDAS based on my actual symptoms. They (Duke University Medical) did not recognize PANDAS 10 yrs ago. Not sure about now...have not gone back. But, they sure got me on the right track back in 1972, I agree. Probably due to my mother's earnest prayers to God...she got a lot of prayers answered in the positive direction, I believe. She was an amazing Christian woman. I told Dr Latimer who my doctor was...still remembered his name, Dr Griffith. She actually knew him.

I had PANDAS as a child (was diagnosed as SC), at age 7. I grew out of it for the most part...became a non-issue by the time I was 14 or 15. By age 18, I was 95% clear of symptoms. But, I never had extreme OCD or anxiety. Mainly dealt with tics/chorea. My only treatment was bicillin shots for 10 years, and then pen vk as a proph abx until age 19 or 20. I am 46 now. There was certainly a genetic predisposition, as both of our children have PANDAS. That is the worse part of the disorder for me in adulthood...that my children now have it.

I PM'd you two emails I have for them

I am in the process of testing for lyme for my son. We've been on the PANDAS road for almost two years. The visible sypmtoms are tics. My son has other internal physical symptoms though. If I could ask, what type of tics are you dealing with? Thanks, Kathy Kathy, he has multiple tics head to toe. Thankfully, the severity is less these days...maybe PEX or IVIG has helped to diminish them, or just maturing with age, as he will be 13 this year. They have always been worse in the evening, but doesn't have the episodes he used to have. But he still deals with...a torso tic, like a hiccup...head jerk tic...multiple facial tics, eye blinking is the worse currently...hand tics, fingers curl up...toe tics, his toes have to be touching the floor when he sits so he can do a twist type tic, and this affects his walking, he stops every few steps and does a toe tap. This is almost OCD-like, but does involve this physical tic. He has learned to suppress this one to a certain degree b/c he doesn't want to scuff his new shoes he got for Christmas. But suppression makes things worse in the evenings. He still develops new tics or they move around. We have been dealing with this for almost two years as well...our daughter has PANDAS w/ lesser severity, for the past 10 years...so it was not a complete surprise when he got it. He's not really had any verbal tics, although I sometimes hear a lip flutter, like a motor boat sound. And we have seen a coughing tic when things were really bad with the evening episodes. He takes Amitriptyline for IBS and we had to add Clonidine in the evenings to help him get to sleep. And sometimes Benadryl. Without these drugs, he would have a tough time going to sleep...we don't dare miss a night's dose, I start prompting him to take his meds around 7:30pm. I am looking forward to the day when we don't have to drug our child to get him to sleep. He tried the Clonidine patch during the day, but it made him sleepy and we chose to stop this b/c it didn't reduce tics enough anyway.

The IVIG was a 2 grams / kilo over 2 days. And on the 2nd day, he became violently ill...vomiting, fever, rapid heart rate, rapid breathing, so they stopped the drip. So, he only received 1.5. They got him stable, but kept him overnight for observation. During the night, he had a bad night terror and his hear rate went way up again...glad he was in the hospital b/c my wife was terrified. And his side effects have continued after he got home for the next several months. Most of which we knew would happen...flushing, fatigue, rapid heart beat. But the worse was the night terrors. He has probably had half a dozen of these or more since then. Had one about a week ago. He will get up from sleeping, sleep walk, and then get this crazed look like someone is about to kill him. Screams, goes crazy for several minutes, then calms down and goes back to sleep...doesn't remember any of it. He never experienced anything like this before the IVIG. Maybe the side effects mean the IVIG is still working, not sure. I have heard it can do its work for up to a year, and this was last April. He was tested as immune deficient in addition to PANDAS. But, BCBS still denied paying for IVIG. How we got he first one done and paid for is a long story. But, b/c of his side effects and not much improvement (that we can see, hoping for immune system improvement that we can't see)...that's enough IVIG for us at this time. We saw more improvement from PEX and no side effects, but unfortunately, as I said it was short lived. I just made an appointment for him today with an LLMD in MD...Dr B. That's our next step, look for Lyme or co-infections.

Hello Joan. Our son had plasmapheresis last January, 2010. I think this is considered the same thing as PEX or plasma exchange. This was ordered by Dr Latimer at Georgetown. My wife and her mother drove up from Raleigh, NC area. I did not go, so don't have all the details as my wife would. She could PM you if you like. Here is what I know... The folks at Georgetown are great. DS had no complications and did not complain at all about the process, said he couldn't even feel it when the exchange was happening. I know the removal of the artery catheter was uncomfortable, but this is the only thing I remember he had anything negative comments on. He was 11 at the time. He had 3 exhanges over 3 days and they then drove home. So, did not have to deal with an airport. I don't think we were given any instructions about keeping him quarantined. The wound took a while to heal, but he was up and around before long. PEX is expensive, but insurance covered most of this for us. But, they do not cover IVIG. Although, he has had one HD IVIG since then, back in April...and this had many more bad side effects. We may never do IVIG again. Results were good. We noticed immediate improvement from tics and reduction in other symptoms...but his main symptoms are tics. But, this was short lived. He got the flu in February. Tics came back. We wonder about doing pheresis again, because tics are everpresent. We are in the process of searching out a Lyme doctor. Don't know if he has Lyme, but he has enough symptoms to fall under a PITAND diagnosis. Maybe there are co-infections. My thoughts are to clear any co-infections, then have PEX again if needed. We haven't found a doc that can help us and lead us in doing this yet, and this is why we are heading towards a Lyme specialist. This has proven challenging, NC is not friendly to Lyme docs from what I have found. I wish you the best in your treatment decisions.

Yes, I had PANDAS. It was definitely strep induced and was diagnosed as Sydenham's Chorea...but it was really more like PANDAS in retrospect. Both my kids now have PANDAS, and this stinks. As I have posted before, at about the age of 15 and especially later at 18, it became a non-issue. I would say I am 95% clear of the disorder, although some days may be more like 90%...but it is still a non-issue. Was until my kids got it, especially ds12. I do wonder what my life would have been like without PANDAS. Would I have excelled in school more? Would I have had less social anxiety? Less worry with trying new things, because of fear of failure, not doing whatever exactly right. PANDAS robs, but it doesn't defeat, at least it did not with me. A lot of folks struggle with many, many types of illnesses. I just hope my kids, especially my son can get past this like I did.

thomasmom, I'll send you a PM regarding an LLMD in NC...(and the little I know about LLMD's) Elizabeth, thank you for your input and I too wonder what infections might be with our son, prohibiting a full recovery. I guess the best thing at this point, is to pursue treatment by an LLMD. I'm just a bit nervous about it and feel like we have to start over.

Thanks Wendy. I will show this post to my wife when I get home today. We have been going back and forth about seeing an LLMD. I'm thinking this should be our next step. Thank you for all the detail you put into your post and this does give me hope.

Eljomom, we are in the same position with our ds12. We often wonder the same thing...why all the tics? He does have some OCD, but main issue is tics. I had this same stuff as a kid and it took several years for my tics to diminish. I don't know the explanation. I have read where the bad auto-antibodies are really sticky and hard to clear out of the brain. Ds had pheresis back in January and this helped until he got swine flu in Feb. And his tics do increase with colds and viruses, so this is symptomatic of PITAND as well. Kim might be right, could be Lyme or another co-infection. We are still considering Lyme testing and know of a Lyme doc in NC (3 hrs away from us). Ds has had many tick bites over the years, but did not develop PANDAS until he got strep in March of 2009. So, it still does not make sense to me because he had absolutely no PANDAS symptoms until strep. Maybe strep is intracellular like is mentioned here a lot? He's been on Augmentin a couple of times, Pen VK and is currently on Zith, 250 per day...after 6 weeks of 500 per day. You would think any infection would be cleared by now. I find it very frustrating that the doctors can't pinpoint how to individually treat our children with PANDAS. We are not sure what to do next. I guess Lyme testing (and possible treatment) will not hurt anything but the bank account, b/c it's not going to be covered by insurance from what I understand. But I don't mind paying out of pocket if I knew it would help. I have not found a doctor yet that can assure me that treatment "xyz123" will help with his tics.

We're in the same boat. Dd14 has had tics for about 9 years now. Fairly mild tics that flair with strep or stress. We notice them, but most others don't. She is currently on Intuniv and it helps some. Recently, she was a bridesmaid in a wedding...up front for 20 minutes...no signs of tics. She is mature enough to suppress them if needed. She has some OCD, but tics have been main issue. Btw, she has not had strep since being on PenVK for the past year. Ds12 has had PANDAS for over a year and a half now. Main issues are tics, one doctor calling them chorea-like at times (during worse attacks at night). He tics from sun up to sun down...neck, face, torso, hands, feet...from head to toe. It is very sad, but he has learned to cope as best he can. He has to take clonidine at night to help him relax and go to sleep. He has had plasmapheresis and one IVIG treatment. Insurance has denied further IVIG treatments, and the one treatment did not seem to help a lot anyway. We wonder if more IVIG treatments would help, but just don't know. We are considering another plasmapheresis treatment, because this did help the most. He had it back in January, then got swine flu in February...tics came back. This was our first sign that he falls under the PITAND category as well. He had a virus a couple of weeks ago and caused a flair up. It was so bad, he could not do his homework one night and missed school the next day. After the virus cleared in about 4 days, he was better...meaning, he still had tics, but was able to recover back to baseline with tics. He also has some OCD, worse than dd. He has been on PenVK and is currently zithro, 250 per day. Oh, and he recently started a clonidine patch that is slow release for the daytime. Seems to help some. We are trying to pursue Lyme testing with his PANDAS doctor. And have just started a gluten free diet. We hesitate doing another plasma and the tics reappear upon the next virus, cold or flu. Or...what if Lyme or some other co-infection is creating auto antibodies? We need to get everything clear first...then do another plasma treatment, in my opinion. I have read a post on this forum that some doctors theorize the bad antibodies are very sticky in the brain and are just hard to clear. So, it may just take time. I had the same stuff as a kid. Tics cleared 75% by the time I was 15, 95% by age 18. Could take time...a lot of time. But from my fist hand experience, they mostly clear up eventually. Hang in there. I know how hard it is to watch your child suffer with tics (and other PANDAS symptoms), and not be able to do find a treatment solution.

Yes, the shot is very painful. It is the most painful shot I have ever had and I had about 120 of them over 10 years. It is like injecting cold, thick motor oil into your muscle. I was elated when I was 17 (almost 18) and went to oral Penicillin.

John, the bicillin did what it was supposed to do...prevented me from getting strep again. It was never meant as a treatment. Same as my kids on Pen VK low dosage...it's just a prophylactic. I was never on anything stronger than this, but who knows, it may have helped in some way. I had motor tics / chorea for years...until I got in my teens and outgrew most symptoms. By the age of 18, I was 95% clear of symptoms and have been ever since...am 45 now.

I used to get them as a child because of a Sydenham's Chroea diagnosis, which in retrospect, was really more like PANDAS. I would get a monthly bicillin shot...ages 7 to 17. I then went to oral pen vk until I was 19, or maybe 20 and stopped. Bicillin is just time release penicillin. As Mati's mom said, it hurts like heck. Both of my kids have PANDAS, and I have not subjected them to the shot, and have not had a doctor suggest it. One good thing about the shot is the fact of 100% compliance...don't have to worry about a child missing an oral dose. Other than that, and the lack of intestinal issues, there is no advantage over oral abx that I know of. I got this shot for 10 years, on the first day of every month and I dreaded the roll around to every month. It is a refrigerated cold, milky, thick liquid. It also makes the injection site sore for about 2 days, (usually your rump).

We are north of Raleigh. We see Dr Corbier in Concord currently and have seen Dr Latimer in MD. I do not know of any doctors in the Triangle area who understand or treat PANDAS at this time. We make the drive to Concord about once a month and stay with family in Charlotte. Dr Corbier is always booked tight and I believe new patient appointments are about a year out. He said they are hiring more doctors at the practice and this would hopefully free him up for more time with PANDAS patients. I'm sure my wife would speak with you and would want to participate in a support group. You can send me a PM and I can pass your name and number on to her.

Our ds12 also has elevated mycoplasma, would have to look at lab results to see which one, but one was normal and the other elevated. How are your doctors treating this? Ours has him on 500mg zithromax a day for 4 weeks. Not sure if it has worked...symptoms seemed to improve, but have flared again this week...he has also had a cold.

Thanks for bringing this to our attention. You're right, it is disgraceful. How is this money from NIMH being sent to Africa going to help any mental health issue over here in the States? Makes no sense. I'm sure this is not the only stimulus funding that is "disgraceful". Good idea to write your senators, but after November, many of them will be out of there anyway. I know this is not the place for politics, but this really hits home, and let's hope our country's new leadership will use our tax dollars wiser in the future.

We are in the Raleigh area. I wish I could recommend a PANDAS doctor in this area, but don't know of any presently. Both of our pediatric doctors here do not dismiss PANDAS, but they just don't treat it. The doctor we saw at Raleigh Neurology did not believe in PANDAS. Hopefully some of the doctors there will come around. Unfortunately, I don't know of any PANDAS doctors at Duke or UNC...I wish there was someone, and there may be, but I just don't know of any. We have seen Dr L in Bethesda, MD but this is a 4.5 hr drive and is expensive. We see a neurologist and PANDAS believing immunologist in Concord, just North of Charlotte. It's a 2.5 hr drive to their offices, but my wife's mother is in Charlotte, so we have family there. I believe the neurologist's wait time for new PANDAS patients is a year. Best wishes to you on your doctor search. If you can just find a peds doctor who is willing to prescribe abx (and try different ones) and a steroid burst, this is a start.

It was good to hear everyone's thoughts on this. My ds12 asked me the other day..."Does PANDAS cause amnesia"? And he has commented, "I'm not as good in math any more". Which is sad, because before he got PANDAS (onset March 2009), he was excellent in math. I was very proud of him because I was horrible at math, and had to have a tutor in high school and early college. But now, he will struggle some too, but will overcome, I believe. Emerson, you're definitely an inspiration, thanks for sharing all that you have. I had PANDAS as a kid too...they called it SC, but it was PANDAS...I guess that's why I was bad in math. But, I managed to graduate from college, even though I had to change my major to something that had minimum math and no chemistry. Our ds14 is on Vyvanse, as I have posted before. She had issues with her recent dosage when school started, but is better since it was backed down. This really helps her focus but can increase tics. I'm not sure our ds could ever take it or any adhd med b/c his tics are so bad.