sf_mom

Dr. K seems to think my son's friend had Scarlet Fever due to peeling palms and feet at the time when all of our kids got sick but my son's friend was never treated for anything other than a resilient strep. The friend tested positive for strep the next day after playdate. My youngest was treated with IVIG five days into his high fever and my PANDAS son was not treated for anything at the time (but was sick). As you know, Scarlet Fever is strep. He then got sick again 6 months later and had that first TIC/Cough that we couldn't get rid of.

AND, so did my son's friend who scores 147 for pandas. He had a very difficult time getting his swollen gland to subside and abating strep with several courses of different antibiotics. Almost a year later they pulled adnoids and he got a little better. Its only been in the past year he has difficulty with behavioral issues and was held back in kindergarten as a result. Perhaps another form of strep in conjunction with group A. I don't know the answer but it does seem the Streptococcus Pneumonae is much more resilient. AND, I find it odd that my son had never been sick prior too them both getting sick at the same time and they are both PANDAS.

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

From my understanding its fairly difficult to be tested for S. pneumoniae and the hospital would 'most likely' need to be associated with a university to have proper testing equipment. Again, I've got an e-mail into Dr. Cunningham to figure out how we might be able to be tested. Perhaps you are thinking of the STREP PNEUMOCOCCAL ANTIBODY TITER test. This is not looking for the actual bacteria but more of the response the body produces to the pneumococcal hence 'antibody titers'.

That is my understanding.... but I did not talk with her directly only to Diana. I did e-mail Dr. Cunningham yesterday to ask her more directly and see how me might go about getting tested for the specific strains of strep. It makes sense though: potentially failed the STREP PNEUMOCOCCAL ANTIBODY TITER by many kids, ongoing infections that are hard to eradicate, sometimes odd titer responses, etc.

So, I met with Diana Polhman yesterday for the first time. We live only a couple of miles apart and she has been helping me tremendously with my son. As most of you know, she met with Dr. Cunningham (STREP EXPERT) last week. It appears and hopefully I'm getting this right..... Dr. Cunningham believes it to be the type of strep. Not typical Streptococcus A but S. pneumoniae which is very difficult to rid the body of infection. Please read the definition below closely. If it is, it would explain why certain antibiotics are not that effective and why repeated IVIG is sometimes required. My child had NEVER been sick until he was exposed to what we now to believe was Scarlet Fever. The first time my son was ever prescribed antibiotics was at 4 1/2...... so, only one year ago. He was healthy, healthy, healthy. What are your thoughts? I hope to have my son tested for S. pneumoniae if possible. I understand its difficult to find someone to test. Plus he is now post IVIG. Taken from Wikipedia Streptococcus pneumoniae, or pneumococcus, is Gram-positive, alpha-hemolytic, bile soluble diplococcus 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.

Seems like PANDAS to me. Does she have any OCD behavior? Was she sick last Oct when she started ticcing? She sounds very similar to my son who couldn't sit still or stop talking. His inability to sit still was causing him to fall off various different chairs in our house (it was actually becoming an issue because he was getting hurt). He also went Um, Um, Um, before starting a sentence or when he would lose his train of thought. He just completed IVIG five days ago and all of that has stopped and has only one remaining slight tic when he is tired. No other medications other than antibiotics. I recommend reviewing post under PANDAS heading or going to PANDAS Network.org.

Just to clarify what Wendy has said above: The Pneumococcal Titers test that so many of the kids are failing is for Streptococcus Pneumonae which is what Prevnar and Pneumovax vaccinate against. Visit the Prevnar website and click on the dancing Pneumo guy--you will get a great explanation of what exactly Prevnar is vaccinating against. Sam THANKS SAM... you are right, it is 'STREPTOCOCCUS PNEUMONAE' that I hope to have my son tested for and potentially explains my sons low ASO Titers of 244 and negative Anti-DNase-B Titers but PANDAS positive. AND maybe why some kids don't show signs of strep or test positive?

OK. I just need to put my 2 cents in on the topic as I live in the Stanford area only a couple of miles from Diana Polhman, EAMom and several others. I just met Diana for the first time for coffee.... she has been helping us tremendously throughout this process and as you know she just got back from seeing Dr. Cunningham. It seems that Dr. Cunningham believes (hopefully I'm getting this correct) it to be the type of STREP..... STREP PNEUMOCOCCAL 'NOT STREP A'. Apparently, they can test for this form of strep but typically the Hospital needs to be associated with a University were they would have the proper tests for Strep Pneumococcal. AND, the Prevnar is what is suppose to protect them from Strep Pneumococcal. I have an appointment with an immunologist associated with Stanford's Children Hospital and I am going to ask that our son be tested if possible on Oct. 20th. Here is also why.... I've posted this here before but my son's friend just got results from Dr. Cunningham and his score is 147 and will be seeing all of the Dr.'s my son has seen. Dr. K has seen this history and believes my sons friend potentially had Scarlet Fever at the time. But this also places it into the timeframe Diana talks about on Pandas Network for the SF area. Additionally, Dr. K thinks that Kawasaki's 'might' be a presentation of PANDAS. • Novemember 2007 (IMPORTANT HISTORY): In mid Novemember 2007 we had a playdate with a boy named Adrain who had a swollen gland on the left side of his neck the size of a golf ball. Several days later (approximately a week) our son had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Within 24 hours of our son getting better our 5 ½ month old baby boy started showing signs of a similar illness. However, his symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 48 hours of our 5 1/2 month old getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. At the time, 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 a week prior. I have recently discovered on 8/27/2009 our sons friend had peeling palms and feet (skin coming off in sheets) with a prior fever 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 eventually diagnosed with a resilient strep and treated with several courses of antibiotics, weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. Our sons were playmates and continued to be in contact throughout 2007 - 2008. Our sons friend, seems to have gotten much better but still suffers from headaches, daily joint pain, weak immune system, extreme shyness, seperation anxiety, chapped lips with cold sores and is repeating Kindergarden. Our son has often complained of joint pain and has had chronic chapped/peeling lips ever since illness. -Wendy

I would recommend getting a phone consultation to speak with Dr. Kovacevic or Latimer this week while pursuing Cunningham's test and long term antibiotics. You daughter appears to have all the clinical presentations of PANDAS and should be considering IVIG treatment or PEX to rid her completely of underlying infection and swelling in the brain. I wouldn't waste anymore time with Dr.'s that aren't familiar PANDAS due to your daughters age. For some reason, the older they get the more treatment resistant they become. By the way, my son is 5 1/2 and his ASO titers were only 244 and anti-DNase-B negative. I'm not sure if he would have tested positive for strep at time of illness: June 24th but it sure looked like strep. I do know he got drastically better after antibiotics, every time he went off antibiotics he got worse, he was about 95% better after about 35 days of straight of antibiotics and just complete IVIG 5 days ago. He is a different kid then he's probably been in a year and 1/2. Good Luck, Wendy

She does provide you with the paper she wrote that explains her findings and it is also listed on Pandas Network 'Micro Mini Cry'... sorry, I don't think its the exact name but you'll be able to locate the paper. I found having the test results concrete evidence that this was 'PANDAS' and helpful when dealing with Dr.'s. My son's ASO titers were positive but only 244 and his anti- DNase - B were negative and the 'FIRST' immunologist said no proof of GAS infection so no antibiotics. Additionally, the results will also give you a perspective of where your child falls in the range of PANDAS. My feeling is that someday they might have a better understanding of how to interpret and what to expect based on the results. It will always be a good reference point.

BUT, congratulations on getting him the medical help he needed!!! I remember that look in my sons eyes.... he felt gone. Now, his pupils are dilated uneven but its getting better and I understand its all part of the healing process. I look forward to hearing what unravels for you as your son improves. Please keep us updating.

I wince when they want to change the name of PANDAS but words 'sudden onset' are included in the renaming name that is up for consideration.

My son is 5 1/2 and we think he might have had his initial strep infection at 4 1/2 'at least that was the first time he had any antibiotics in his life'. There was another time at almost 4 he was ill, maybe exposed to Scarlet Fever but recovered on his own. We are now five days post IVIG and I'm seeing a calmer 'different kid' and not sure I know him. I'm realizing how much this zapped his personality for a year and a half. I imagine you are feeling the same 10 weeks post PEX? It feels like a miracle and I'm still learning to trust the change and accept that its actually working.... I look forward to what unravels and rediscovering OUR BOY over the next 10 weeks.

Hmmmmmm, hate to mention Dr. K again BUT he seems to think 'Tourette's and OCD' are symptoms of PANDAS. WOW, that a strong statement and I feel odd posting it here but in my heart I too believe it to be true. He mentioned going back and studying 'Tourette's' original case studies.... He's fairly certain it was PANDAS.

I've often wonder if minimizing the use of antibiotics in last 20/30 years has increased the number of individuals that are sick. Remember not too long ago stronger, longer doses and often daily antibiotics were prescribed. Now, it seems you've won the lottery when a prescriptions handed out for a five day course. I understand from Dr. K.... Dr.'s have been trained that way because they are all fearful of Mercer.

I would think just normal.... anyway, I'm sure you are seeing huge improvements in Pixie. One thing I've noticing since IVIG is that our son IS sitting still. He used to twist and turn in his chair at the dinner table so much he would often fall out and hurt him self. I am amazed at his ability to sit still, play by himself...... he is 'content'. I honestly think he has been sick much longer than I was aware and I just got used to his hyperactivity. Wendy

Fantastic News!! AND, so nice to hear positive feedback.

Kelly, my son has a reaction to amoxicillin so he put him on the azithromycin. Didn't say anything negative about one antibiotic verses the other to me.

This is all regarding 'Getting the Word Out'.... Wouldn't it be nice if Dr. Latimer, Dr. Kovacevic, Dr. Swedo or Dr. Cunningham were nominated for the Nobel Prize. Unfortunately, as just a mother of a son who has been sick.... I am unable to submit a nomination. So, I'm just putting in out there in the world hoping it will happen someday.

Erica, In one of the Swedo talks posted on-line she says something about noticing the increase in OCD/Tics 3 to 9 days prior to full blown strep. After our son got sick, we noticed he was getting better on his own 'no antibiotics', but his titers were positive so we treated with a 5 day course of antibiotics and he improved even further, within 48 hours of being off antibiotics his symptoms started to increase so we secured another round of antibiotics, symptoms immediately improved again. Finally, after securing a third round of antibiotics and being on them for 35 days straight he was back to 95%. We are now four days post IVIG treatment with Dr. K and expect him to be on antibiotics for the next year to make sure his immune system has a chance to recover. I would expect for you to see similar improvements or declines if he is not treated aggressively. I would try to secure antibiotics for as long as possible (minimally, until the cough is entirely GONE). OUR SON is taking 250 m.g. Azthromycin daily, in the morning and he is 42 pounds.

Wow, thanks....... this helped and very insightful.

My son has a reaction to Amoxicillin so he prescribed Azithromycin. I'm not sure he has changed protocol.... he did seem open to longer term prescription than one year.

Just wanted to say the nurses had nothing but nice things to say about Pixie... 'adorable' was their comment. I explained the odd connection over the internet. I also wanted to add that Bi-polar runs in my family too as well as depression, anxiety on my husbands side. It my understanding that the long term in-balance of CaM Kinase is what effects the dopamine which is what triggers depression or Bi-polar. Maybe its all reversible with proper treatment for Pandas? I'm curious what Pixie's results were from Dr. Cunningham's test regarding dopamine? I can assure you because of the family history I'm focused on the long term CaM Kinase numbers. -Wendy

You know I'm jet legged and overwhelmed with the daily tasks and worried for my son. BUT, the one thing I do know is Dr. K was very, very comforting to be around and hear his perspective. He is truly committed to figuring this out for everyone. I also got the feeling that there are a lot more people working with him (more than we will ever know) to help him publish his results so its widely treated. I believed him when he thought IVIG was the right answer for my son...... even when he explained the lack of success he has had with TIC presentation. He did clarify that the tough cases had gone untreated for a while and PEX sometimes can be the better solution. He also admitted he didn't understand the relationship with the weak immune system 'yet' and the role of immunization. We need to keep presenting him with the failed STREP PNEUMOCOCCAL ANTIBODY TITER results. He also spoke about the 2 specifics cases that are now re-experiencing symptoms after IVIG over three years ago... He did not mention any names but he is reconsidering the current prescription of antibiotics for 'only' one year post IVIG. He is definitely listening and open to all perspectives. I'm also conflicted about posting the following story because I don't want to discourage anyone from pursuing PEX or making any decision without consulting with their Dr.'s first about the risks. BUT, a good friend of mine, sister with a rare autoimmune disease almost died after PEX it deplete her system so much she was given her last right... Thankfully, she recovered but its taken a long time with a lengthy stay in the hospital. AND, even knowing this information I am still considering PEX as a possibility for our son if need be. AND, I am sure someone could come up with a similar story about IVIG and its consequences. Anyway, grateful we have a choice between two options. I'll do anything to help my son beat this disease.