oivay

As far as the rash on the hands, have you looked in hand/foot/mouth disease? I think it's also called Coxsackie disease. And as far as the fever with strep goes, my daughter never got a fever when she had strep, and each time she tested positive on the rapid strep test, so you can absolutely have strep with no fever. Her doctor actually made a point of telling me this. (Cultures were always positive went sent out, too, although it got to a point where the doctor just stopped sending them out because she always had strep.)

I'm not quite sure what they're looking for, but there is absolutely no way in H-E double toothpicks that I'd go for this.

The first time my daughter was on zithro, she had horrendous constipation. Her doctor said she had seen this happen more than once with other kids. It got so bad at one point, we were using just about every laxative available. In the end, we used Miralax, but I misunderstood the dr's instructions and gave her more than twice what she was supposed to get. It did work, though......... Now that she has been on zithro for well over a year, we use the probiotics because she now has problems with diarrhea, stomach upset, etc., but we don't dare stop taking it.

I thought the Cunningham test was a test for anti-basal ganglia antibodies? Cam Kinase/dopamine receptor antigens etc.? Myabe someone with a better understanding could explain it?

"It makes me wonder if the Dent only girls who are getting better are going to relapse the next time they get a viral infection." I'd bet money on it. In our case, we could guarantee that when she got even a low grade fever (99.5 or higher), the ticking started again. Oddly, she never got fevers with strep. (GP pointed this out to me.)

I'm just chiming in to say that my daughter also had a brief episode of stuttering....lasted about a week (when both kids were very sick) and went away when we doubled the zithromax dose. She never really had any OCD. Almost all tics/chorea. Also, she plays softball. I have to say that when I saw all those videos online and noticed how many of those kids were playing softball, it really gave me pause.

This is the latest from Dr. T........ UPDATE ON TOURETTE-LIKE ILLNESS CLUSTERS - the Leroy Syndrome I had the opportunity to examine both girls from Corinth, NY area today. This makes 11 girls examined in all. I spent fours hours with the two families. Although these families travelled through the Leroy area over the past summer, I do not believe this has any bearing on this case. After taking their histories and examining them I am ...more convinced than ever that they have the same disorder as the Leroy girls and that this is definitely not a conversion disorder. It is a new clinical syndrome. I think it's best to call this cluster the "Leroy Syndrome" as it does not meet clinical criteria for Tourette Syndrome, PANDAS or PANS. This is a matter of semantics, what doctors sometimes call "nosology" The "Leroy Syndrome" has the following features: 1. Hyperacute onset - the cardinal feature 2. Exclusively, or largely female, post-pubertal onset 3. Ballistic tics, upper body, frequent unilateral predominance, frequent nuchal involvement with echopractic features 4. Occasional vocal tics, typically synchronous with ballistic movements 5. Occasional features: migraine headache, autonomic dysfunction (POTS and fainting) 6. Minimal or no obsessive-compulsive features or anxiety 7. Minimal or no cognitive decline 8. Minimal or no choreiform signs The Leroy Syndrome is a PANDAS variant. All cases examined thus far have a GABHS or mycoplasma trigger. All cases are responsive to anti-inflammatory agents. All cases are treatable with appropriate antibiotics. Dr. T What do you you guys think?

I'm interested to see how it will all play out long term. In our case, symptoms came back about 4 times over the course of a a little over a year, about every 3 mos, and were much worse when we initially discontinued abx. We were symptom free within a couple of days with abx and steroids for most of the episodes, until the last one, when we did PEX. With the kids Dr. Conversion Disorder is treating, they seem to be using psych meds, psychotherapy, and disconnecting them from the internet. Is this a long term strategy? What happens when it recurs, and we pretty much all have seen. As far as the ones Dr. T is treating, I'm assuming Dr. T will keep them on long term abx, which will probably help tremendously.

Check out the threads for the LeRoy girls. It seems like most of the neuros around Rochester don't believe in Pandas, and are pretty enthusiastic about diagnosing just about everyone who comes through the door with a conversion disorder. (See the thread where they say they diagnose 2 or 3 conversion disorders per week.) This isn't a path that's likely to lead to any treatment. Having a kid with Pandas is a lot like having a second job, and it really, really, really pays to go to someone who knows what they're doing.

Is there a chance it could be an allergy to abx? My younger daughter broke out in red spots all over her body when she got amoxicillin.

I wouldn't go anywhere near Dent.......... Is there any way you could travel to one of the Pandas specialists? Maybe you could contact Dr. T and possibly see him the next time he is up there for the LeRoy girls?

When Dr. T ordered blood tests for my daughter, we did everything through Quest. It seemed like he ordered tests for just about everything, from lyme to Wilson's disease. When she was really in bad shape, it seemed like she was going for blood tests at least once a month, if not more often. Her ped did the tests that she could, but we still had to go to Quest for some of the more "exotic" ones. We had strep levels done on all of us.

Apparently they've been cured......... http://www.wgrz.com/comments/156939/37/Doctor-Some-LeRoy-Students-With-Illness-All-Better Be sure to read the comments section...........

Use a little more than 1/2 cup of epsom salts per bath. We use it for sprains, etc., but when my daughter had severe chorea, it did seem to help her feel better. I would never leave her alone in the bathroom though, as I was terrified that she'd shake and slide under. We never used natural calm....never heard of it. As far as the video games, when she was at her worst, she didn't have enough motor control to even hold a pencil, let alone use the controllers or a keyboard. She couldn't even use the TV remote. She does play some games now, but I try to limit them as if I don't, she'd be playing stuff like Mortal Combat etc. During the initial aftermath of each episode, I was ok with video games because it seemed to help with returning dexterity, and it gave her an avenue to connect socially with her friends. (When she was really bad, she didn't want anyone to see her unable to walk etc., and wouldn't see the kids who came over to see her.)

By "go systemic" I think she means bacteremia..... http://en.wikipedia.org/wiki/Bacteremia Apparently it's pretty common during surgery. I think that's why they generally avoid surgery when there's an active infection.

My younger daughter had this once. She was about 4 or so....It looked a lot like diaper rash, bright red from front to back, but she had been potty trained for over 2 years. Doctor knew instantly what it was and put her on zithro. Cleared up in a few days and she was much happier. We also used a little A & D ointment.

My daughter was always complaining of severe headaches, which apparently can be a symptom of strep. They started when she was about 5, and one was so severe they called me up to pick her up from daycare as she had told them it felt like her head was about to break. We went to an allergist/immunologist the immediate care doctor referred us to, and she said she had vasomotor rhinitis, which was resulting in the severe headaches. Immediate care doctor's idea was lyme, but at the time, all the lyme tests were negative. She always complained of headaches, so it was hard to associate them with the Pandas episodes. She had some pretty severe ones while she was doing the PEX too, and for about 3 weeks afterward. She says she still gets them once in a while, but they don't seem anywhere as bad as they were. As far as the strep/cultures etc., our neuro said that the fact that her titers weren't rising in the face of documented strep suggested a "selective immunodeficiency for strep" as one time her GP actually called up the neuro and said "never before in my life have I seen such rapid and such positive results from a rapid strep test." (In about a minute, the positive stripe was all the way to the top of the strip.) Within a week, the chorea started again. Again, here titers never really rose, and for a while there, we were having at least one blood test a month.

And how bout this one........ http://www.huffingtonpost.com/lloyd-i-sederer-md/le-roy-illness_b_1251202.html This is from the New York State Medical Director of Mental Health, Lloyd I. Sederer The Le Roy adolescents need to continue under the care of specialists, like neurologists and infectious disease experts, as well as their family doctors. They, as well as their families, should consider counseling if they believe it would be helpful to assist in managing the stress of these symptoms and the concerns they raise. Why would they need an infectious disease expert for a conversion disorder??????

Well, Dr. Conversion disorder has cured them by taking away their internet access, texting, and facebook........... http://www.nypost.com/p/news/local/what_makes_them_tic_N5feofLwNdnVferxw0awIJ Granted, this is the Post, so you can't necessarily believe a word in it........... "Still, the girls who are in his and McVige’s care are improving, in large part because the doctors made them pull down their Facebook pages and YouTube videos (Brownell is the most recent deposted), banned them from texting, and pulled them out of school due to bullying — not from other students, but from the four girls who are not in his care, who he believes may be malingerers. “My patients are literally being terrorized,” he says. “They’ll say to the girls, ‘You never had it, and that’s why you’re getting better.’ ” Read more: http://www.nypost.com/p/news/local/what_makes_them_tic_N5feofLwNdnVferxw0awIJ#ixzz1mB0Sqay3"

I had my kids vaccinated, but I would never let them get more than one vaccine per month. I believed that vaccines were necessary, but I also thought that there was enough controversy to warrant not going overboard with them. I remember telling the pediatrician that I didn't care if I had to pay another copay, I'd bring them back in a month, and eventually we'd catch up. She wasn't thrilled, but oh well...... That being said, before now 12 year old started 6th grade, she had to get the meningitis vaccine, which I was ok with as she'd already been diagnosed with pandas, and somehow I figured that it would help "protect her brain." (Not rational in hindsight, I know........) Within a week of getting it, she had strep, which both of my kids tested positive for, and then went into full blown chorea again. Neuro said no more vaccines, ever. I still think that vaccines aren't bad, but I really think twice about them now. I don't think it's necessarily the vaccines that cause the symptoms, but the immune response they produce that triggers the devastating pandas-like response. And, as far as the whole vaccine/autism thing goes......... I work with autistic kids. I evaluate them on a weekly basis. I am always struck by how each and every parent I've interviewed so far mentions a "sudden change", and which is always suddenly followed by significant developmental regression. It's almost like the sudden onset of Pandas. I don't know if there is a temporal association with vaccines, but it generally falls around the 18 month mark. I won't be getting my older daughter any more vaccines, but I will probably get my younger one (now 6) the ones she still requires, but I will still keep spacing them out. There is now way in H-E double toothpicks that I will go near Gardasil though........

We had T & As on both of my kids. They were 11 and 5 at the time. 12 year old was on abx before and for 10 days after. So was 5 year old. Almost as soon as she stopped the abx(zithro), the tics/chorea began to come back. Neuro said that it was probably the result of post-op bacteremia. We did another steroid burst with clindamycin, which helped greatly, but symptoms never fully subsided. Also tried biaxin, medrol, and tegretol. still didn't stop. About two months later, we did PEX, and she has been symptom free since, but she is still on 2x/week zithro. Her pediatricin didn't think they needed to come out, as they weren't large or even red, but neuro strongly suggested we do both kids. When they came out, the ENT said 5 years old's were "just large and infected", but older one's were "full of pus and the most disgusting things he'd seen, ever, in 15 years of practicing." In our case, I think it did touch off another episode, but it was absolutely necessary to get them out, and so far neither of them has tested positive for strep since. (over a year.) I've heard from some other parents that you should add prednisone to the post op abx to prevent another episode.

http://www.foxnews.com/opinion/2012/02/09/toxins-or-hysteria-teens-leroy-new-york-are-haunted-by-tics/ These kids are now "haunted"........... And check this out............. "I’m not convinced. I believe Dr. Trifiletti is too reliant on blood-test results and on speculation about their significance. " Read more: http://www.foxnews.com/opinion/2012/02/09/toxins-or-hysteria-teens-leroy-new-york-are-haunted-by-tics/#ixzz1m1Fn27XT God help us........... too reliant on blood tests?

I'm really confused by Dr. Conversion Disorder's statments with respect to Swedo. He said she told him that she can't comment because she hasn't seen the patients, and is prevented from publicly speaking about these cases because of her position at the NIH, but then he immediately says she agrees with him that it's conversion disorder. Isn't this publicly commenting on this issue? Of course, we'll never actually know if that's what she really said. And I guess we should all stay off the "evil internet" because it could interfere with our abilities to make health care desicions because it causes us to question our doctors' abilities. We are all just supposed to blindly drink the koolaid and not seek 2nd opions........Puhleeze...........

In our case, my daughter was diagnosed with Pandas and Sydenham's. Kid next door was diagnosed with Tourette's. Kid directly across the street was also diagnosed with Tourette's. I thought the odds of this were statistically impossible. I asked my our neuro about this ( of the 3, he only treated my daughter), and asked if he thought this was basically statistically impossible. He said "Not at all. What you probably have is a highly virulent strain of strep going around." ????? Additionally, right before we went for plasmapheresis, neuro there told me, and I was also told by others, that there were often "clusters" of kids with Pandas=like symptoms, and that they usually showed improvement with abx and steroids, until they didn't, and then it was time for PEX. This particular batch was around the NY/PA border.

I actually asked one of the doctors in the hospital what he would do if this happened to his own kid. He said "nothing. She got better last time, and she'll get better this time." This was actually as she was practically convulsing. I said "She only got better last time after 3 weeks straight of zithromax." I then asked him how he would explain that this happened every time she had strep. He said "Strep confuses me." and ran away from me.