sf_mom

I don't know how old or how long your daughter has been sick but our son's primary presentation was TICS and he had many. He only had Dr. K's two day IVIG treatment and he is very close to TIC free. He still blows on the back of his hands when he is tired and I hear an occasional cough.. '3 per day' but that is it. He is two week post treatment. I DO believe there is hope with TICs just keep attacking the bacteria with antibiotics and IVIG. We now believe he was sick for over 1 1/2 years when he was exposed to Scarlet Fever got sick but went undiagnosed.

In my opinion, hit the bacteria hard until all symptoms are gone! If a particular antibiotic isn't working don't be afraid to ask for a change... certain strains of strep can be difficult to eradicate. Our son is 5 1/2 years old, 43 pounds and we saw immediate improvement with 250 m.g. of Azithromycin per day. He was about 90% better after about 30 days on antibiotics. He received IVIG two weeks ago and he is ALMOST 100%. We are now able to attribute certain behaviors to the underlying illness that we didn't realize. Huge improvement in fine motor skills, restlessness, short term memory, saying Um, Um, Um when he lost his train of thought..... and still unraveling what might have been PANDAS and his true personality. His ASO was 244... one month after being sick, his ASO titers dropped to 205 as he improved. I look forward to retesting him when he is symptomless. Where do you live... as our son got sick around the same time?

You can call Dr. Kovacevic in Chicago on Monday. A phone consultation is $350.00, IVIG is $1,000 per 10 pounds of child, surgery center is about $1,800 for 2 days, Dr. K's time for 2 days is $2,400. We flew from CA to Chicago on Frequent Flyer Miles, Hotel was $65.00 per night, rental car was around $400.00 for 4 days. Overall, approximately $8,000 to $10,000. We will see if we get anything out of our insurance company. The good news is you could probably be scheduled within 2 to 3 weeks and on your way to doing better. Sorry, don't know much about Dr. Latimer's cost but she is in DC area and does both IVIG and PEX.

Melanie: I'm so happy for you. Another success!!!!!!!!!!!!!!!!!!!!!!!!!!! Dr.'s need to start listening. By the way, we are experiencing similar two weeks post IVIG. He is tic free so far today..... usually crops up early evening when he is tired, no OCD, no restlessness, etc. Still some mood liability when he is tired but I can reason with him.......... so, improvement all the way around. He is on 250 m.g. of Azithromycin daily. Our plan is to investigate underlying immune issues further. We've already tested his Pneumococcal Titers and he failed 10 of 14 serotypes. Still waiting for the results of the IgG subclasses but blood was drawn prior to IVIG. If he shows a deficiency I'll request monthly IVIG for at least six months. If the immunologist won't work with us and he has a set back does not fully recovered in six months we'll go back to Chicago.

Faith: With Dr. K I e-mailed a brief history of our son first and then followed up with phone consultation, steroid burst, our son's response and scheduling of IVIG. I don't know how it works with Dr. Latimer but I understand from other posts she'll want the Cunningham results plus medical history.

Yes, there are 90 serotypes or strains and some more difficult to eradicate then others. One thing they look at in PANDAS children is how sick were they as babies with ear infections, sore throats, pneumonia, sinusitis and any strep related illness like Scarlet Fever, RF, Syndenham Chorea even in the family tree. One thing that is becoming extremely common is the deficiencies in the 'STREP PNEUMOCOCCAL ANTIBODY TITERS'. Its easy to have them tested by an Immunologist. Streptococcus pneumoniae, or pneumococcus, is Gram-positive, alpha-hemolytic, bile soluble aerotolerant anaerobe and a member of the genus Streptococcus.[1] A significant human pathogenic bacterium, S. pneumoniae was recognized as a major cause of pneumonia in the late 19th century and is the subject of many humoral immunity studies. Despite the name, the organism causes many types of pneumococcal infection other than pneumonia, including acute sinusitis, otitis media, meningitis, bacteremia, sepsis, osteomyelitis, septic arthritis, endocarditis, peritonitis, pericarditis, cellulitis, and brain abscess. S. pneumoniae is the most common cause of bacterial meningitis in adults and children, and is one of the top two isolates found in ear infection, otitis media.[2] Pneumococcal pneumonia is more common in the very young and the very old. S. pneumoniae can be differentiated from other members of Viridans Streptococci, some of which are also alpha hemolytic, using an optochin test, as S. pneumoniae is optochin sensitive. S. pneumoniae can also be distinguished based on its sensitivity to lysis by bile. The encapsulated, gram-positive coccoid bacteria have a distinctive morphology on gram stain, the so-called, "lancet shape." It has a polysaccharide capsule that acts as a virulence factor for the organism; more than 90 different serotypes are known, and these types differ in virulence, prevalence, and extent of drug resistance. Coccoid Bacteria Important human pathogens caused by coccoid bacteria include staphylococci infections, some types of food poisoning, some urinary tract infections, toxic shock syndrome, gonorrhea, as well as some forms of meningitis, throat infections, pneumonias, and sinusitis.[4]

I just want you to know someone did the same for me shortly after my son sick in June and he is BETTER!!! Almost symptom and tic free 13 days post IVIG. I also believe in my heart the early treatment is hugh in the success and recovery for the children that are afflicted. I've attached a brief outline of my son's illness along side his friends. • Novemember 2007 (IMPORTANT HISTORY): Sunday, Novemember 4, 2007 we had a playdate with a boy named Adrian who had a swollen gland on the left side of his neck the size of a golf ball. Exactly 10 days after playdate our son had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Eactly 10 days after the start of our son's illness our 5 ½ month old baby boy started showing signs of a similar illness. However, our 5 1/2 month old symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 24 hours of him getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. I believe the bacteria was stopped in its track due to the IVIG treatment provided to our son at day 5 of high fever. I asked if Kawasaki’s was contagious and explained my older sons symptoms. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s the week prior. I have recently discovered that our son‘s friend had peeling palms and feet (skin coming off in sheets) with a prior fever and rash at the time of playdate as well as the swollen gland. The peeling palms and feet was not communicated to Adrian‘s Dr. when his mother sought treatment for swollen neck gland. Adrian was diagnosed with strep throat Monday, Novemeber 5th, 2007 and treated with several courses of antibiotics. It was eventuallly determined he had weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. THE SWOLLEN GLAND DID NOT RESOLVE ITSELF UNTIL ADRIAN’S ADENOIDS WERE PULLED. Our sons friend, still suffers from headaches, daily joint pain, weak immune system, extreme shyness, seperation anxiety, OCD behavior, TICS, chapped lips with cold sores and is repeating Kindergarden. Our son's CaM Kinase score 124 – lower range PANDAS, blood draw taken 11 days post Predisone Burst which might have lowered his score. We had our son's STREP PNEUMOCOCCAL ANTIBODY TITER checked and he is deficient in 10 of 14 serotypes, ADRIAN’S CaM Kinase score 147 – mid range PANDAS. Adrian’s STREP PNEUMOCOCCAL ANTIBODY TITER were tested in 2008 and he has similar deficiencies. Thankfully, our other younger son who was diagnosed with Kawasaki’s seems to be fine. He is 2 years, 4 months old now. • July 2008: We believe that our son at 4 ½ years old contracted strep again but went undiagnosed. All I remember was, he was sick, had an ongoing cough/clearing of throat for 3 weeks so we finally took him to the Dr. He was diagnosed with sinusitis prescribed Amoxicillian, one to two days after starting amoxicilian he had a full body rash, neck to ankle and was switched to Azithromycin. Cough/clearing of the throat continued to persist so we took him back to the Dr. and was told at the time the clearing of throat was psychosamatic and that it would eventually go away (no additional antibiotics were perscribed)… Cough/clearing of throat did eventually wane after another 6 to 8 weeks but would crop up occasionally throughout year. He had NOT been prescribed antibiotics prior to this time frame. He was healthy, healthy… Only prior illnesses were Croup x 3, Flu – March 2006, Illness/Flu November 2007 outlined above. • June 24th -27th, 2009: High Fever and Sore Throat. Had to sleep in his room to get him to settle. I thought he was restless due to fever. • July 1st - 4th, 2009: Noticed Tic Behavior: Rapid eye blinking, clearing of throat, inability to sleep, moodiness. We had company this particular week so I might have missed some of his symptoms. Our son had a playdate on the 1st with a friend who immediately took ill afterwards. Rowan’s illness consisted of headaches, fever, full body rash but was never formly diagnosed of anything. • July 2nd, 2009: I remember that our son was very moody this particular day – I took him to the Academy of Science Museum. On our way home, he slept the entire way which is very unusual for him to nap during the day. • July 6th – 17th, 2009: Multiple-Tics: Shrugging of shoulders, heading tilting to left, flicking back of ears, clearing of throat, grunting, eye blinking, etc. OCD Behavior: sneeking off to wash hands (does not know why), insistant that he has to clean his hands prior to touching baby blanket (does not want to get germs on it), concerned about germs from a friend who spent the night. Other Symptoms: moody liability, separation issues at school, ongoing fears of a story about a snake, inability to fall asleep, bad dreams, night waking, complaining of aches, pains and itchiness every morning. I was so concerned I video taped his behavior at this time.

As you know, our son just completed IVIG with Dr. Kovacevic..... He said NOT to vaccinate without his prior approval.

EAMom: I an appointment with Margo two days ago.... she has the ability to prescribe, she has hospital privileges, there is an outpatient clinic in Los Gatos that solely administers IVIG if needed, she has more medical training than the majority of Dr's out there. She seemed to be listening very closely, was heading to Chicago to see her parents and thought she might contact Dr. K. I'm just not sure why she couldn't prescribe IVIG and I know she was thinking the same. There is hope!!!!!!!!!!!!!

FANTASTIC NEWS!!!!!!!!

You are welcome..... keep on keeping and never give up. I say go for the 'Sammy Style'. AND its weird but I'm praying there is an immune deficiency so he can get the care he needs.

During our time with Dr. K..... one of the nurses was telling me about a boy who came in month, after month, after month for IVIG. He was considered in the Autism perspective, his OCD was so bad he wouldn't wear a hospital gown and thought the chairs in the surgery center were too contaminated to sit down. So, he would get IVIG and just pace back and fourth for the 7 hours. After about 12 months of IVIG one of the nurses walked in and he was sitting in a chair. The nurse asked, what are you doing?.................... his response was, WHAT, DID YOU THINK I WAS GOING TO STAND ALL MORNING! I guess everyone cried tears of joy that day. I suspect, some children need more treatments than others and after reading 'Saving Sammy' and just started 'Against Medical Advice' none of the SSRI helped. AND, its very common, some of them actually increase tics. It seems like you got the rage response from the encephalitis in his brain. This is very common response, a friend of mine had cancer of his sinuses. After they treated him for the cancer and removed tumor, he was extremely sensitive to light, noise and had rage behavior to the point his wife almost divorced him. It turned out it was an infection from the surgery, once they resolved the infection he was back to his normal self. Hang in there and keep pressing for help. YEY SFMOM!!! This is good news indeed-- TMom

Our son just complete IVIG with Dr. K 12 days ago. He is 5 1/2 and we think he was originally exposed to Scarlet Fever a year and half ago with his first mild presentation one year ago (cough/clearing of throat), 2nd episode started June 24th with a strep infection (mostly tics, mild OCD). My son was only on antibiotics at time of 5 day steroid burst in August. Dr. K had him draw a picture prior to burst and 14 days post burst to determine fine motor skill improvement 'it was dramatic'. We did see a temporary improvement in our son but once the steroids wore off symptoms increase. Currently, we do not notice any OCD behavior and only minor tics 'blowing on the back of his hand and a total of three cough yesterday' when he is tired. He had a complete melt down yesterday when he dropped one of his Leggo Cars and it broke into pieces.... he was tired. So far, we are very hopeful. As for Dr. K being published.... He is in the process of publishing his finding after 10 years of treating/studying along with Mayo and John Hopkins. I he has also been consulting with Susan Swedo regarding the findings. He said it should be out sometime this fall or early next year. I'm sure with whatever Dr. you consult 'Dr. K or Latimer' they have a plan of action regarding current medications.

Our son is on Azithromycin and I believe the type of antibiotic you use is highly dependent on what potential strain of strep my be lurking in their system. In my son's case we are fairly certain he was exposed to Scarlet Fever by a friend. His friend was treated off and on for months with different types of antibiotics to abate a swollen gland/strep with no success... eventually his adenoids were pulled and that seemed to help. BUT both of our sons are now considered to have PANDAS and the Azithromycin is working. Our son presented with more TICs than OCD.... 10 days post IVIG, I do not notice any OCD but has one remaining tic that presents mostly when he is tired. I'll keep you posted to see if it completely disappears. Remember in Sammy's case they tired several types antibiotics before they saw progress. I would definitely push for change if you don't see improvement.

I just got stung by a bee last week and it still itches!! It was inside a sweat shirt when I put it on. I feel for Alex but I'll ad that my son was plucking his hair to look at the roots (sound familiar to anyone). Thankfully, I don't think he was eating it but he stopped once he felt better. All he said about it was that he stopped because he didn't want to lose his hair.

My son failed 10 of the 14 serotypes and we'll be getting our IgG subclass results tomorrow all taken pre-IVIG. I hope to retest everything in 6 month post IVIG to see if there are any changes.

Even more information on titers. A child needs to be on antibiotics for about a month to see a true impact and sometimes it matters as to what type of antibiotic. There are certain strains of strep that are difficult to eradicate. I'm in the Bay Area, my son was originally exposed to Scarlet Fever and he is responding azithromycin. Some respond to other types of antibiotics. In reading through multiple posts, it seems there is a lot of confusion about titers and carriage of streptococcal infection. As a parent struggling to understand the medical information, I wanted to post what I've learned thus far and I hope it will be of use to you. 1) Titers need to be compared to a baseline. Direction is much more important than absolute value. Some people produce very significant antibody responses, some don't. Some have high baselines, some don't. Since most often there isn't a test result from the prior month to compare against, most doctors (and labs) use a measure known as the "upper limit of normal" [uLN] as defining the baseline for ASO tests. Then if your single sample is > 130%-150% (depends on lab) of this baseline, they consider the test positive. 2) So this begs the question of what is the ULN for ASO? There are lots of studies here but what is important is that the studies have a very large range. For example in one study, kids not suspected of GABHS strep in the 5-10 year range, had 48% had titers below 100 6.8% had titers of 100 10.6% between 101-125 7.6% between 126-156, 22.1% between 157-195 and 4.5% in 196-244 Unfortunately, even in this study, there didn't seem to be a second measurement taken within 1-2 weeks to look for rise/decline. 3) This begs the question of "what level of response consistitutes a positive?." Could a result of <100 still be an indication of a recent strep infection? The answer appears to be yes, but only if you have a prior value done by the same lab, using the same technique. Most studies show that subjects will have a response 2-4x their baseline, this statistically could still fall within this "normal" range depending on the individual. So again, the importance is to look at trends and not absolute values. 4) What about falling titers? Does a high number indicate a current strep infection? The answer seems to be no. There is just no good study about how fast ASO titers fall and what drives the rate of fall. Thus a single sample really gives no good indication of direction. Most studies agree that the rise is within a week of infection with a peak at 4 weeks, but there isn't a study of whether this peak remains if the initial infection goes untreated. So could someone with an untreated strep infection have a declining ASO titer? -- the answer appears to be yes. For example, the most recent study by Kurlan [June 2008 - Pediatrics] has one subject that has positive throat cultures for 23 of 25 months but the ASO titers are falling within this entire time. What does this mean? No one knows. 5) Do all strains of strep produce an ASO reponse? The best study I've found on this is Kaplan's 2003 paper "Immune Response to Group A streptococcal C5a Peptidase in Children: Implications for Vaccine Development." What this paper shows is that despite positive strep cultures on day 1, at a subsequent visit 4 weeks later, 46% of subjects presented no ASO rise, 55% presented no Anti-DNAseB rise, and 37% presented no rise of either ASO nor Anti-DNAseB There also seems to be good research indicating that skin GABHS infections does not produce ASO response despite producing Streptolysin O. What does this mean? Does this mean that the test was bad? That some strains don't produce the streptolysin O protein? That some people don't mount a high immune response? That the individual is a strep carrier? That the strep was going on for some time and the ASO titers have already fallen? That skin GABHS infection differs from pharangytis GABHS? The answer is that the scientific community doesn't know. There has been no careful study of the decline rate of ASO titers and the entire field of "strep carriers" is not at all clear. So summarizing, a rising ASO titer (regardless of absolute value) is an indication of GABHS strep; however, you need a baseline to be sure it is rising. A falling ASO titer indicates that there was strep, but no one knows when. A high ASO titer could be anything including that the titer is falling, rising, or just a high baseline. Statistically it is likely to be a falling titer. Most will treat a titer of > 400 IU's as a falling titer (i.e., that there was once a strep infection sometime in the past). But the exact time of the infection is not known. The interpretation of a low ASO titer is unclear. There could have been an infection and the titer has already fallen, the baseline for the person could be low, the individual may not respond with a strong immune response, the strain may not produce significant amounts of streptolysin O. One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type. Regards, Buster

If the antibiotics are helping that is an indication right there. I would document your child's history, request a CaM Kinase test kit from Madeleine Cunningham's office. This will specifically tell you if your child is PANDAS or not. It measures the CaM Kinase protein in the blood that is activated by strep infections. You can find out more about it under the PANDAs section here or at PandasNetwork.org Also many of the Dr.s who are treating PANDAS will look at the clinical picture. Two specific Dr's that are the experts and treating at least several patients weekly are Dr. Kovacevic in Chicago and Dr. Latimer out of DC area. Here is also a link to helpful threads regarding PANDAS http://www.latitudes.org/forums/index.php?showtopic=3928. Once you get your results and if they are PANDAS I would recommend consulting with one of the two mentioned Dr.'s for treatment plan and not wasting your time trying to explain or finding a Dr. who does not understand. I'm around and check ACN forum daily if you have anymore questions. Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2217 Here is some information about titers. 1) Is PANDAS a reaction to elevated ASO or AntiDNAseB titers? The research indicates no. ASO and AntiDNAseB are responses to Group A Beta-Hemolytic Streptococci. PANDAS is thought to be a reaction to another antibody that's created in response to the streptococci. The theory from Cunningham and Kirvan is that there is a monoclonal antibody that is created that targets a particular carbohydrate sequence on the streptococci. This monoclonal antibody is supressed in most people but for some reason it is not supressed in PANDAS kids. 2) What amount of streptococcus is necessary to cause a detectable rise in ASO and AntiDNAseB? This is unknown. Some people respond with high antibody counts while others have low counts. It is just not understood. Studies in 2003 by Kurlan indicate that ASO rises in 53% of patients with culturable strep, AntiDNAseB rises in 45% of patients with culturable strep, and either ASO or AntiDNAseB rises in 60% of patients with culturable strep (i.e., 40% don't have such a rise). 3) Does an elevated ASO or AntiDNAseB indicate a persistant strep infection? Apparently not. Some people keep high AntiDNAseB for years. The rate of fall is just not known. 4) Is a high ASO or AntiDNAseB bad? It is unclear, it indicates the body is still producing antibodies to antigens from strep, but PANDAS is likely related to a different antibody and it is not at all clear if the rise/fall of this antibody is linked to the ASO or AntiDNAseB titer. 5) Is there a test for this antibody associated with PANDAS? Not yet. There remains considerable debate about the antibody and whether the antibody causes inflammation or just interference with basal ganglia function. Swedo and others thought the debate over PANDAS would end when the antibody was discovered. Unfortunately, others have not properly repeated Kirvan and Cunningham's experiment and others have had difficulty correctly identifying PANDAS patients.

You won't be sorry..... The earlier your daughter gets treatment the better the success they've been having long term. I recommend posting your story (if you haven't already) I'm positive you'll get a resounding answer that your daughter is PANDAS.

Alex, I couldn't agree with you more..... we are one week post IVIG. Our son is doing well, I am suffering from Post Pandas Episode and the entire family is looking forward to a normal life. We have 2, two year olds that need our attention. I already sense my need to refocus BUT this forum has been invaluable. I plan to post updates but I'm frankly exhausted from the 12 weeks of sleepless nights from the time our son got sick until now.

TRG, DO NOT WASTE ANY TIME she is definitely PANDAS if she had strep three weeks prior to tics starting. It took our son about two to three weeks for the tics set in after his strep infection. His ASO titers were positive post infection and did not have him cultured at the time of illness 6/24/09. He was shoulder shrugging, head tilting, flicking of the back, eye blinking, jaw wagging, arm swinging, coughing/clearing of throat, grunting while eating, etc. He was writing his name backwards in a mirrored fashion... So if you held it up in a mirror his name would read correctly. I didn't notice the OCD behavior at first.... I actually didn't even know what OCD was at the time. A Tourette's Specialist had to tell me what OCD was over the phone. By the way, he was getting better on his own 4 to 5 weeks post his illness but the ticking was always there. He is now 'almost' fully recovered after non-stop antibiotics since August 8th and IVIG treatment a week ago. It a miracle. You need to read, read, read on PANDAS and learn more about strep tests and titers...... oftentimes they are negative. Read 'Saving Sammy', he is an extreme case but he didn't ever have a reported strep infection but his titers were through the roof. Read Panda's Network in detail at least three times. The cases posted there are extreme but its what you can expect if you don't seek the proper help. Her need to to say something over and over is OCD. It will only continue to get worse for your daughter and especially if she is exposed to strep again. Wishing you all the best.

Dr. K was telling me one of the ways they treat if there is a reoccurrence post IVIG is to go at infection aggressively HIGH dose antibiotics for 14 days or symptoms subside. However, he was referring to patients that had been over one year post treatment. I would talk to Dr. Latimer but keep up the antibiotics for current infection.

I looked up Coccoid Bacteria and found the following. Type of Streptococcus pneumoniae. Important human pathogens caused by coccoid bacteria include staphylococci infections, some types of food poisoning, some urinary tract infections, toxic shock syndrome, gonorrhea, as well as some forms of meningitis, throat infections, pneumonias, and sinusitis.[4] AND as stated in my prior post: The encapsulated, gram-positive coccoid bacteria have a distinctive morphology on gram stain, the so-called, "lancet shape." It has a polysaccharide capsule that acts as a virulence factor for the organism; more than 90 different serotypes are known, and these types differ in virulence, prevalence, and extent of drug resistance.

I'm not sure. I do know STREP PNEUMOCOCCAL ANTIBODY TITER tests 14 serotypes and any response less than 1.5/2.0 means they don't produce the antibodies to fight off the Pneumonia. Did you ever get any clarity from Dr. K on the test results? -Wendy Yes-that is something completely different than the Streptococcus Pneumonae titers test. Mycoplasma pneumonia is a type of atypical pneumonia. It is caused by the bacteria M. pneumoniae. This type of pneumonia usually affects people younger than 40. Various studies suggest that it makes up 15-50% of all pneumonia cases in adults and an even more in school-aged children. Wendy-Do you know if the ASO titers relate only to Group A strep or does it show an increase for any type of strep?? I don't know but I'll ask the Immunologist when I see him in later in Oct.