oivay

During her episodes, my daughter's movements were actually worse than the ones on that video. They started with the head/neck/arms, but progressed to the legs to the point where she needed a walker. She also used a neck brace, which really seemed to help her. She was diagnosed (by Dr. T) with Pandas and Sydenham's. Her movements never stopped unless she was asleep, although sometimes they would slow down a little. They only stopped completely when she was on abx, and then abx and steroids, and then plasmapharesis. With each new episode, they got progressively worse. She tested negative for everything but strep, but her titers would never rise, even in the middle of a documented strep infection. Doctors are extremely reluctant to diagnose chorea, I think because most of them have never seen it. I have videos of her during her episodes. PM me if you think it would be helpful.

I'm a speech therapist too, and I just wanted to add that Pandas can do strange things to a child's speech. What you describe almost sounds like verbal apraxia, although it's hard to say without seeing it. How are her other aspects of coordination? handwriting? gait? etc. If you tell her to pucker her lips, blow, move her tongue up/down, side to side, can she do it? If not, this might indicate oral apraxia. My daughter started stuttering pretty severely out of nowhere for about two weeks when both of my kids were sick (no history whatsover of stuttering before). The stuttering stopped after high dose zithromax (I think it was 500/mg day for 10 days.) She also had some swallowing problems during severe episodes of chorea. Have you checked into Sydenham's chorea? Sydenham's can cause speech difficulties/dysarthria/dysphagia. My daughter's Cunningham test also showed clear Pandas, but her symptoms were almost all more like Sydenham's. We had good luck initially with massive doses of steroids combined with abx. (first zithromax, then clindamycin/prednisone, then biaxin/ medrol). She also got decadron by IV at one point. I fully understand your issues with neurologists washing their hands of the situation. We were summarily dismissed by a few of them too. In the end, the only thing that resolved her symptoms was plasmapharesis. She has been fine since. Have you emailed videos to Dr. T? He was a godsend to us. Also, email Diana at the pandasnetwork.org. If anyone can help, it's her!

We did actually have to get my daughter evaluated a few times by a cardiologist after each episode of severe tics/chorea. The first time she did have mitral valve regurgitation, but the cardiologist said that there was no way to tell if it had been there already as she had never been to a hospital etc. before that. The first time (and this was in the middle of severe chorea), both the technician and the cardiologist seemed quite concerned. We saw her twice more after that, several months later, and the last time she said "she's fine. that was an awful lot of work to do on a perfectly healthy child!" (daughter has a dual dx of pandas and sydenham's)

The psychiatrist we originally saw said that my daughter's condition was probably Pandas (she agreed with the other doctor's diagnosis), and said that it probably was a result of a compromised immune system which resulted from the stress of our divorce. I tend to agree with this as it was extremely stressful on all of us at that time and there had been one incident of particularly bad behavior by her father that we all witnessed about a week before her first episode.

When she was really bad during the 2nd exacerbation, we started with zithro, but the tics progressed into severe chorea, so then we used clindamycin. she was on (I think, can't totally remember) 500 mg/day, and what seemed like massive doses of prednisone. I remember picking up these gigantic bottles from the pharmacy (liquid prednisolone)I think it started around 60, and then tapered down, maybe 50 for 10 days etc. over the course of a little over a month. The prednisone made her pretty speedy.....but she could walk again within two days. Then she started alphabetizing the bookcases, cleaning everything, etc. She is now supposed to be on zithro 250 twice weekly, prophylactically. It's getting really hard to get her to take it though because she get diarrhea, stomach cramps/gas etc. Sometimes I'm lucky if I get her to take it once a week, but I don't dare let her stop because there's no way either of us could go through that all again.

There is a danger of the veins collapsing when pex is done through IV. In our case, her veins held up. They did it twice weekly (Mon/Thurs) for 3 weeks. By the 3rd week, we were keeping our fingers crossed, as we really didn't want to get the line put in. Thankfully, her veins held up. It helps if you have the kid do hand squeezing exercises beforehand, and I got some theraputty from an OT friend. When they squeeze the hands, it helps the veins stand out.

We are still using zithro prophylactically. The first time she was on it, symptoms resolved almost entirely, but came back even worse when she stopped it. Couldn't use amoxicillin due to allergy, then we later discovered she was also allergic to augmentin. Also used clindamycin in combination with a steroid burst, which completely resolved symptoms during the 2nd episode.

We got her tonsils out in Nov. 2010. (Had both kids done at once.) She had been symptom free for about 2 mos. before tonsillectomy. Her last round of symptoms started almost as soon as she stopped abx post op. Neuro theorized it was bacteremia from the surgery. Tried steroid burst/clindamycin, which helped a lot, but didn't totally resolve symptoms. Then tried Biaxin/medrol combo, which gave her such severe diarrhea we had to stop it after about 2 days. Then we tried tegretol/zithro, which helped somewhat, but left her pretty much asleep all the time and very weak. Then we did the PEX. I would definitely get the tonsils out before PEX, and request prednisone/abx for the post op period. It takes about 2 weeks or so for a kid to recover from T&A. Also, my daughter's strep titers never really rose, even in the midst of documented(rapid strep tests were always highly positive) strep infections. Also, I have heard that pandas symptoms will worsen with dental procedures/teeth falling out etc.

She is now 12, was 11 when it was done. About 100 lbs, almost 5'. She did it through IVs in both arms, one exit, one entrance. They take everything out in one arm, and put back their platelets, albumin, and red blood cells in the other arm after it goes through a blood warmer. No central line. When they do it this way, there is a danger of the veins collapsing, and if that happens, then they have to do it the other way, I think it's called a subclavian catheter? (through the neck.) Thankfully, her veins held up, although it got a little iffy toward the end. She missed a lot of school during the process as she was just too exhausted to go. By the second treatment, there was a marked improvement, and pretty much all symptoms had disappeared. After several rounds of just about everything (abx, steroids, tranquilizers, depakote(really bad idea), and tegretol, this was the only thing that totally got rid of her chorea/dystonia/tics etc.)

We did pex at CHOP. 6x over three weeks on an outpatient basis in March. Dx'd with Pandas and Sydenham's. So far, she has been symptom free since. Still on zithro 2x/wk. I would absolutely do it again if needed.

my little one would get very hyper...running around in circles, try to climb out the windows etc., but she would be completely normal when she was on abx (often suprax). (this happened often as she always had sinus infections and also a urinary tract condition. she used to have bright green flourescent mucous just drip out of her nose for weeks at a time.) at the time, I never made the association. it was only after the pediatrician decided to test little one for strep after older one had 4 strep infections in five months, then little one tested positive for strep. after ped put them both on zithro simultaneously, they both cleared up, and little one was no longer a snot monster. eventually, older one was dx'd with pandas & sydenham's. little one would always get super hyper when older one was ill. little one rec'd month long course of zithro while older one showing active symptoms, and at visit to neuro he looked at her and said "she looks completely normal! I'm keeping her on the zithro.". also got both their T&As done simultaneously, and little one was pretty much ok after that. (even ped agreed that at the very least her adenoids needed to be removed.)

I would definitely go for the T&A, and also request steroids post op. My daughter had a horrendous bout of tics/chorea post op. Also several bouts of strep beforehand. Her tonsils, while not superficially nasty looking, were full of pus when they were removed.

I would definitely go for the T&A, and also request steroids post op. My daughter had a horrendous bout of tics/chorea post op. Also several bouts of strep beforehand. Her tonsils, while not superficially nasty looking, were full of pus when they were removed.

I definitely would take him to a gastroenterologist. They will do stool samples/bloodwork etc. to rule out things. My daughter's abdomen would also get very hard and distended. At one point we had tried literally every laxative/suppository/enema they had at CVS, and nothing helped until we did the massive doses of Miralax. (I didn't do this on purpose, I just misunderstood the doctor's directions, and it totally cleared her out within a few days.) She also had an episode of severe chorea following her tonsillectomy, which got significantly better(but not totally gone) with a steroid burst and clindamycin. Neuro said this bout of chorea was probably a result of bacteremia consequent to the surgery. It never totally went away though, and the only thing that got rid of it totally was plasmapharesis.

stomach aches etc. are a sign of strep. (not a well known one, but my daughter presented with stomach aches often, and sure enough, when tested, she had strep.

My daughter had stomach problems before the Pandas kicked in, about 1 1/2 months before the ticking/chorea started. I had taken her to the ER twice, where they thought she had appendicitis, but 2 CAT scans later, they said they had no idea what it was, but it wasn't appendicitis. Her pain was so severe they gave her dilaudid. We went to a gastroenterologist, who diagnosed her with mesenteric adenitis based on the CAT scans. He also had her x rayed, which showed "a significant amount of stool in the colon." Looking at the xrays, you could see she was just packed full. He reccommended Miralax, which we used. I unfortunately misunderstood his instructions, and gave her more than twice what she was supposed to get, but it cleared her right out within a week............ About a month later, the severe ticking/chorea started. She was ultimately diagnosed with Pandas and Sydenham's chorea. One of the preceding/coexisting factors for Sydenham's/rheumatic chorea is mesenteric adenitis. This is something you may want to check out. take a look at this... http://www.merckmanuals.com/professional/pediatrics/rheumatic_fever/rheumatic_fever.html

Your letter needs to state a diagnosis and that this condition is resulting in "significant negative academic and social impacts.". Legally, your district will have to do something if this phrase is included, particularly if you put something in there like "that access to typical classroom/curriculum activities is limited or restricted by this condition." It also helps if you suggest what help might be needed, ie, tutors/special classroom accomodations, additional time, etc. In our case, I wrote it myself, and asked the doctor to sign it, which he did. The district didn't give me any problem......

as far as other pandas symptoms, yes, she had some. at least a few times, she peed, suddenly, without warning. it got to the point where this is how I knew an episode was coming on... she would stop flushing the toilet whenever she did a #2 (OCD?), turn into an absolutely impossible ######, and within a day or so the tics would start, then go into full blown chorea. rapid strep tests were always positive, but strep titers never increased. brain mri and video eeg were negative, although as soon as she started coming out of the anasthesia for the brain mri, she was twitching while she was still under. (she was so choreic they had to put her under to get her into the mri machine.) there was one time where she did have "crazy" symptoms when both of my kids got some virus.....she was absolutely terrified of walking on the floor and said the stripes were going to get her. I had to carry her, which wasn't easy. she also started stuttering. this went away after another course of abx. as far as the diagnosis went, the cunningham test showed pandas, but her symtpoms were pretty much chorea.

There was no question that the tonsils needed to come out, she had almost constant strep for the year preceding the onset of pandas symptoms. And when they came out, it was clear that they were absolutely riddled with infection and were likely the cause/source of all the strep. I still wonder if all of this could have been avoided if they had just taken out the tonsils after the 3rd or 4th strep infection. Other daughter (6) also would test positive for strep but was generally asymptomatic. We also had a t/a for her at the same time. Others have said that if you do a tonsillectomy, especially in a pandas kid, you should make sure to do a steroid burst and abx post op. They give you abx afterward, but most surgeons don't give you steroids, but this seems to be an important step in pandas kids.

Her dystonia started about a week after her tonsillectomy/adenoids, after the zithro was temporarily stopped. (She was on zithro for 10 days post op, and then we were going to go to 2x/week.) Dr. T said it was probably from post-op bacteremia. Her tonsils, although they appeared normal, were full of puss. Surgeon said "Her tonsils are absolutely the most disgusting things I have ever seen, and I've done close to 2 thousand of these.)" Her dystonia was in her lower legs and feet. She also had simultaneous head/neck/arm chorea, and a little hand movement,which resolved after clindamycin and a steroid burst. The feet, although improved, never stopped, and then we tried biaxin and medrol. It was like a writhing motion where both feet rubbed together. Biaxin didn't really have any effect, other than severe/profound diarrhea, soh we had to stop after 2 days, and went back to the zithro. Tried tegretol after that, which did reduce it to the point where she could almost walk normally, but she would still fall down stairs and fell face first into a few snowbanks. Tegretol made her basically sleep all day, and she put on at least 10 pounds in about 2 weeks. It basically left her non-functional, and the blood levels weren't high enough, and she was starting to look extremely pale, although bloodwork showed no anemia. (you have to watch out for anemia on tegretol.) After the pharesis, her right leg was still pretty twisted/contorted, it almost looked like CP.. We went for PT, massage/stretch, which helped tremedously.

My daughter had plasmapharesis on an outpatient basis at CHOP in Feb/March of 2011. She has been fine since. Her diagnosis was Pandas and Sydenham's chorea. Her symtpoms were primarily severe tics, dystonia, and completely debilitating chorea, which necessitated using a walker and neck brace during the most severe bouts. She has been fine since the pharesis, although she would still complain of severe headaches for about a month afterward. (6 total procedures). She is still on prophylactic zithromax, indefinitely. She is completely back to normal now and is a typical 12 year old girl. I just feel like I'm always nervous that it might return, and her neuro said if she ever gets pregnant, it's possible the chorea could come back. (I don't know if this still applies since she had the pharesis, since he said that before she had it.) Has anoyone had experience (positive or negative) years after pharesis?

We saw Dr. Elia at Chop. Dr. T is her neurologist. They spoke with each other throughout the process. They have to do a series of treatments, I think it is based on weight/blood volume? They will explain it all to you, but I really was in no state to process all the information. You can't do just one treatment. It has to be a series of treatments to make sure all of the blood is filtered. I think it's based on gas chromotography/filtration? Again, I probably should have paid more attention, but I just wasn't really focusing on the science involved at the time. Yes, my insurance paid, or at least they're supposed to. Chop wouldn't do anything without an authorization code from the insurance co. In her case, we were lucky that her veins held up. If they hadn't, they would have put in a subclavian catheter, which they do under general anasthesia. They put one IV in each arm, blood comes out one side, and goes back in the other with the plasma/albumin etc. after going through the machine and a blood warmer. The nurses at Chop really go out of their way to make the kids comfortable, and they watch dvds, play games etc. while it's going on. Each treament took about two hours. Yes, daughter is still on abx now, zithro twice weekly. She seems absolutely fine now,plays sports, runs around with her friends, but I don't dare skip the zithro, just in case. she hasn't had any tics/chorea since. she did get a really bad cold right after pharesis, and she missed a lot of school during the process as it totally wiped her out, but it was the only thing that worked for us. and we tried it all before getting it.....abx, steroids, depakote, tegretol, valium, dexamethazone, you name it........

We did plasmapharesis at CHOP on an outpatient basis. Thankfully my daughter's veins held up. They do it twice weekly, either mon/thurs or tues/friday for three weeks. It was a bit of a drive for us. I think the risk of infection was actually pretty low as they throw away everything afterward. (The nurses showed us how it all worked.) She was diagnosed with Pandas and Sydenham's chorea and had debilitating tics and chorea. There was a noticeable difference after the 2nd treatment and she has been fine since. You'd never know how sick she was by looking at her now. It made a tremendous difference.