sf_mom

I wouldn't worry too much about Dr. Lloyd. He is very on board and gets the severity of PANDAS. I'll be interested to know your experience after your visit. I would also say you've been having no progress with the current antibiotics due to a potential rise in cross reactive antibodies from recent illness/es and potentially from the recent vaccinations. Again, the antibiotic does only half the job..... the correct antibodies does the rest. Shortly he will be given the donor antibodies required and he'll improve dramatically. I would give the Azithromycin more time post IVIG and then switch if there isn't FURTHER progress after several rounds of IVIG. By the way, with each IVIG the cross reactive antibodies get stirred up.... causing a reaction hopefully milder and milder as each month passes. Wishing you all the best with the up coming treatment. -Wendy Thanks NeverGiveUp - this is a good perspective. We did see an initial improvement on a fairly low dose of Azith, then nothing when we upped it either time (125mg to 250, then 250 to 375). Maybe we do need to try Augmentin. As for monthly dose, I forgot to ask! We are doing 2g/kg initially, and I'm glad you reminded me because I should here from them tomorrow and will ask about the monthly dose then.

Buster, Back to the fact that they've had great success with Steroids and IVIG with Kawasaki's. I understood this to be a simultaneous treatment.... BUT again this is based on my memory of long conversations with Dr. K. My memory could be a little foggy. -Wendy I don't think it matters. If anything IVIG will help close the BBB if it is open by being so anti-inflammatory. There really is unlikely to be any significant flow across the BBB. I do think that it's worth considering a pred-burst before IVIG... I have no great reason why except that it's the protocol that Dr. K uses and, well, seems to work. Can't give you a paper on it, but I think the antibiotics, then if that doesn't work, pred, then if that has effect, IVIG or PEX, then continued prophylaxis -- seems the right course.

Just met with Fredrick Lloyd yesterday and he was SUPER helpful with Romy and gave us a prescription for a YEAR, 200 m.g. of Azithromycin daily. He also referred us to Lewis again... this time for Romy. He is great listener. Ordered any lab I directed him too. I think all you have to say to him is due to the seriousness of your son's condition antibiotics alone will no longer do the trick, he has no antibodies to wage the war going on in his body. Remember it takes antibiotic plus antibodies to mount a response to the underlying bacteria/auto-immune response. Dr. Lewis believes this to be true and why he is willing to treat your son with IVIG (donor antibodies). He also took several articles/papers from me to read..... included was Madeleine Cunnningham's paper (which he might have already read) and the presence of the S. Pyogenes in Kawasaki's study. I jokingly said, he been chosen to become an expert.... he laughed and said he was willing to help as directed, just keep giving him the information. I even told him what the IgG results would be once they are received........ low end of normal. -Wendy

Its got to be both and why the combo of treatments is working. With Kawasaki's patients almost ALL antibiotics via IV at acute phase have been tired (perhaps long term antibiotics have not been used) and even IV antibiotics by Dr. K on some PANDAS children to no avail..... its the IVIG 'they think' that does the trick for Kawasaki's. Dr. K's concern is they are not using prophylaxis antibiotics with Kawasaki's as a preventative similar to RF and possibly why WITH a history of Kawasaki's Disease some children are now considered PANDAS. The IVIG treatment my younger son had at day 5 of illness broke the fever within 24 hours and they announced him cured. His aneurysm was a 4 on a scale of 1 to 10 that resolved in 6 months. The combo of steroid and IVIG has also been used to great success for Kawasaki's (although not sure of long term results). Daily baby aspirin is also prescribed (as a blood thinner) until aneurysm resolve themselves (makes you wonder). Anyway, the science gets above me at times so I remain hopeful to communicate my intuition to Dr. Lewis effectively. It feels just out of my reach of understanding but so close to knowing why!!!!!!

Wow, your comments HELP tremendously...... I wanted to laugh and cry at the same time with relief. Its so painful to watch your child/children go through the process of recovery while trying to determine if there is an eventual relapse around the corner. Our biggest symptoms currently is emotional liability. One day our son is perfect and then 'BAME' a bad day AND I know the emotional liability is NOT indicative of our sons true personality. Dr. K has been wonderful to us too. I will be FOREVER grateful to those that helped along the way.... Even the slightest bit of encouragement or hopeful words can make my day. THANK YOU FOR YOUR STORY!!!!!!

Buster, As you know, I've been reading up on the exotoxins of the S. Pyogenes. I think the following is important to statement #1 and why PEX is so immediately successful. BUT, if not ALL the toxins are removed you get a slow progression of symptoms and exacerbation with exposure. IVIG would essentially resolve any remaining toxin after PEX. Just a mother's perspective with NO MEDICAL training. BUT, I intend to drill DR. LEWIS about the following. Characteristically, Streptococcus pyogenes is a Gram-positive facultative anaerobic bacterium. It is not motile, and does not produce spores. It occurs as long chains of cocci, and occasionally in pairs. Streptococcus pyogenes is classified as Group A streptococcus. Group A streptococci typically have a capsule composed of hyaluronic acid and are beta-hemolytic, which is true for Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2] Several factors add to Streptococcus pyogene’s ability to cause disease. These factors include its production of exotoxins and streptokinase, the M proteins on its surface, and its hyaluronic acid capsule. Streptococcus pyogenes produces three types of exotoxins. These toxins are responsible for causing fever and scarlet fever rashes; they also increase the risk of endotoxic shock and depress antibody synthesis.[3] Streptococcus pyogenes also produces streptokinase, a toxin that digests blood clots to assist in the invasion of wounds. The cell wall of Streptococcus pyogenes contains M proteins, which are a major factor behind its virulence. M protein is heat and acid resistant, it aids in the attachment to host tissues, and helps the cell to resist phagocytosis. Host immunity to Streptococcus pyogenes results from the development of antibodies specific to M protein.[4] The hyaluronic acid capsule of Streptococcus pyogenes is chemically similar to human connective tissue, which allows it to go unrecognized as an antigen by the host’s body, further helping the bacteria to avoid phagocytosis -Wendy

I think you are making the right choice..... Fantastic News. I can't wait to hear more about how he is doing. -Wendy

Buy rapid strep test on-line and do it yourself.

Leslee, Its so nice to hear success stories. We have been treated by Dr. K also and are still praying for similar success. Right now our main issue is mood liability/mood switching. I was wondering if you remembered similar as your son recovered and how long do you think it took for him to 'FULLY' recover? -Wendy

15mg/day sounds too low, even for a 2-year-old...did you mean 150mg/day? How much does she weigh? Possibly 15 ML, one tablespoon, 200 m.g.?

Wishing you the best of luck too... We have done two IVIG treatments with Dr. K and praying a third isn't required. Our son presented with mostly TICS and mild OCD. TICS are much harder to eradicate, there are underlying immune issues with our son and we know he was exposed to RF, got ill and went untreated..... was most likely was undiagnosed Kawasaki's. With Kawasaki's sometimes several rounds of IVIG are required and antibiotics do not work independently. Remain hopeful that only one treatment is required but prepared to retreat if needed. -Wendy

Mom MD and DC Mom: As you know we recently saw Dr. K for a second IVIG treatment and we spoke a little bit about PEX. He did say he felt it important to follow-up PEX with IVIG. Apparently, IVIG helps mediate the bone marrow as well as..... wash away deposits in the Basil Ganglia. Not sure what he meant by 'deposits'..... I think he explained it to me at the time but my memory is a little fogging and I'd hate to misquote. -Wendy

Our 2 1/2 year old is on 200 m.g. of Azithromycin daily (as of today). He was on 125 m.g for about the last three weeks and just switched. We had him tested because of the history of events. It turns out, Adrian was diagnosed with RF and treated with IVIG last week. Our older son, looks like it might have been Kawasaki's at the time but went undiagnosed. Romy was confirmed Kawasaki's. Romy has also had the sand papery rash similar to Scarlet Fever that is slowly disappearing with antibiotics. I've attached the brief history and our test results for your review. You might want to have similar test run (we did IgG subclasses today). We will most likely treat with IVIG if his IgG Subclasses are low or lower end of normal indicative of many PANDAS kids. I was upset, angry, worried and now I'm moving forward with testing. Better to know now instead of 2 to 3 years from now. We have some emotional issues too but so hard to tell with a 2 1/2 year old we are depending on test results to guide our decision. CaM Kinase: 147 Mid Range PANDAS White Blood Cell Count: 4.8: Low end of normal range is 6.0 Red Blood Cell Count: 32: Low end of normal range is 33 ASO: Negative Anti-DNAse-B: Negative Strep Pneumoniae Antibody IGG Serotype 1: < 0.3 Serotype 3: < 0.3 Serotype 4: < 0.3 Serotype 5: < 0.3 Serotype 8: < 0.3 Serotype 9: < 0.5 Serotype 12: < 0.3 Serotype 14: < 2.4 (The only serotype that is considered protective) Serotype 19: < 0.4 Serotype 23: < 1.2 Serotype 26: < 1.6 Serotype 51: < 0.3 Serotype 56: < 0.3 Serotype 68: < 0.7 Brief History of Exposure in 2007 November 2007 (IMPORTANT HISTORY) Sunday, November 4, 2007 we had a play date 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 play date Corsa had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Exactly 10 days after the start of Corsa‘s illness our 5 ½ month old baby boy Romy started showing signs of a similar illness. However, Romy symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 24 hours of Romy getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. Romy was treated with IVIG on 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 play date 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, November 5th, 2007 and treated with several courses of antibiotics. It was eventually determined he had weak immune system, sinusitis 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, separation anxiety, OCD behavior, TICS, chapped lips with cold sores and is repeating Kindergarten. Corsa: CaM Kinase 124 (Blood Draw taken 11 days post 5 day steroid burst), Deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers, ASO 244, Anti-DNAse-B Negative Romy: CaM Kinase 148, Deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers, ASO Negative, Anti-DNAse-B Negative. Adrian: CaM Kinase 147, Deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers (Blood Draw in Feb. 2007, Retested Pneumococcal Antibodies 11/12/09), ESR and CRP Elevated in 2007, Anti-DNAse-B 680 - Confirmed RF Diagnosis 2009 I BELIEVE THE FOLLOWING IS IMPORTANT AS TO WHY CORSA’s and ROMY’s Anti-DNAse-B are not elevated but still have a response in their CaM Kinase. Kawasaki's & RF streptococcal superantigens!!!!! In summary, emerging evidence strongly suggests an involvement of streptococcal superantigens in the pathogenesis of RF and Kawasaki disease. Changes in HLA class II alleles appear to affect superantigen functions, dramatically leading to the proliferation of specific T cell clones, which appear to target cardiac and vascular tissues. The pressing need at this time is to examine the role of superantigens from M18 strain (known to cause RF) in SC and PANDAS. We speculate that subsets of other psychiatric disorders such as anorexia nervosa, body dysmorphic disorder, and ADHD may also share pathophysiology similar to that of RF. Findings from these studies, if affirmative, would have a profound impact for the practicing physicians in psychiatry and pediatrics. http://neuro.psychiatryonline.org/cgi/content/full/16/3/252 AND, a study PROVING that ASO Titers do not rise in Kawasaki's but S. Pyogrenes is Present. http://www.springerlink.com/content/l34qj830548q4q46/ Summary attached. ROMY's (Our younger son) RED BLOOD COUNT IS LOW, WHITE BLOOD COUNT IS LOW Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2] http://pyogenesgonewild.com Adrian was sick - November 4th (confirmed strep November 5th, 2007), Corsa was sick - November 14th, Romy was sick - November 24th, 2007...... exactly 10 Days apart. Streptococci are catalase-negative. In ideal conditions, S. pyogenes has an incubation period of approximately 10 days. This bacterium remains acutely sensitive to penicillin. Failure of treatment with penicillin is generally attributed to other local commensal organisms producing β-lactamase or failure to achieve adequate tissue levels in the pharynx. Certain strains have developed resistance to macrolides, tetracyclines and clindamycin. http://en.wikipedia.org/wiki/Streptococcus_pyogenes

I would recommend you speak to Dr. Kovacevic in Chicago. If you are unable to travel he might know someone in your area that can help. I concur with every thing everyone else has said.... there is hope. -Wendy

Yeeeeeaaaaaaaaaaah! By the way, Dr. K said low but within normal or below normal range IgG Subclasses is typical among the PANDAs kids he has seen. If our younger son Romy has normal but low IgGs... tested twice three months apart he will treat him with IVIG for PID (emotional aspects are too hard to tell at 2 1/2). Romy also shows deficiencies in 13 of 14 STREP PNEUMOCOCCAL ANTIBODY TITERs.

One thing that Dr. K told me that has always stuck with me......... That so many kids have secondary issues/illnesses as a result of PANDAs. Our son has had terrible cradle cap. It was so bad we had him using a special shampoo and conditioner. About a week after our son's first IVIG it completely disappeared almost over night. Thankfully, it has not returned. Solve the underlying immune issues and I'm positive you'll see improvement with the yeast issue. Couple of things that were mentioned by Dr. K or the nurses OBSC. - Mouth Sores - Eczema - Allergies - One child had a feeding tube in 'misdiagnosed'.... When the child started feeling better I understand he no longer needed the tube but administer medication through it because he didn't like the taste. Eventually, the tube came out.

Fantastic News!!!!

It has Penicillium notatum 4X.... the company is out of Germany. My friend swears by it for colds and it was recommended to her by a homeopathic Dr. after her daughter had seizure from a high fever. Take it twice daily, at onset of cold or fever bump to 3 times daily. Its not cheap but at this point its a heck of lot cheaper than a Dr. visit. We see Dr. Lloyd tomorrow. - Wendy SFMom, You may have told me before, but I can't remember - what's the homeopathic antiviral? Our son reacts to viruses as well.

I agree with every thing EAMom says. We have our son on a homeopathic anti-viral http://syntrion.eu/usa/products/syimmune-tablets and daily azithromycin 250 m.g. 5 years old and 45 pounds.

I know your fear and worry. Our son just completed his second IVIG with Dr. K.... he is only 5. From what I understand, recovery can take a full year or two. Keep adjusting the baseline up for your daughter with each improvement. Starve that bacteria/auto-immune response out of her system and never lose hope. You are in a really good position with monthly IVIG. Hang in there, as I know you'll see huge improvements over time. I also understand with each IVIG some of those cross-reactive antibodies can get stirred up causing a 'flair' in symptoms. I'm sure others who are doing monthly will chime - in with their experience. Please give me a pep talk back when I'm feeling blue. -Wendy

I too wanted to wish you all the best tomorrow!

We had confirmed strep AGAIN in our son's class last week. I kept him home today figuring there was continued exposure going on in the class. I called his teacher this afternoon to find out how many were absent from class,...... 6 out of 22 so almost 25% of the class. With everyone having guests or travel I figured there would be a lot of sick kids. We are now going to have him stay home until I check with his teacher again mid week. -Wendy

I KNOW!!!!!!!!!! AND, they spent 8 months trying to eradicate the strep from Adrian to NO avail... they finally pulled his adenoids and called him cured when the swollen neck gland finally resolved. They never ever investigated the RF possibility. AND, basically that is what Madeleine stated.... 'all sorts of things can go wrong'. Apparently, they really haven't studied the underlying immunological issue of RF either. I've been hounding them that its the bacteria/exotoxin that attacks the host and basically wipes out the immune system (look at strep antibody titers results from 2007 to 2009 in Adrian) and not a disposition, maybe weak immune system due to age but that is all. THE ODDS OF FOUR OUT OF FIVE children getting sick at time of playdate, 3 children currently have very similar labs and all PANDAS range CaM Kinase, awaiting to test the fourth child. The only child who did not get sick was Romy's twin sister (only female at playdate) and I've also offered to run labs on her as a comparative. There is something obviously going on and why I'm heading back to Lewis. I also think its the key to why we are not seeing raised ASO or Anti-DNase-B in many children. They DO NOT RISE in Kawasaki's so similar. Happy to run any tests and to recruit whoever. Dr. K called Madeleine to see how he could test for the S. pyogenes exotoxin but he is in Europe this week and don't know if they finally talked. Dr. K also wanted to call the people from the Japan study on Kawasaki's and S. pyrogenes exotoxin, he was walking around with the entire study while we were there (http://www.springerlink.com/content/l34qj830548q4q46/). He really wants to keep Romy in a holding pattern until we run further tests so we have him on 125 m.g. Azithromycin at the moment and we've seen improvement in his behavior. Madeleine latest comments were....... 'very interesting', its hard for her to dispute anything at this point. WE HAVE ALL THE LABS AND MEDICAL RECORDS. Corsa was never a sick child prior to exposure/illnesses... first time he was on an antibiotic was six months post illness when he got his first TICs (so, he was able to fight it off for a little bit). Adrian's mother never communicated positive strep at the time when my children got extremely ill.... She just didn't make the connection at the time and I didn't know enough. I had never even heard of Kawasaki's prior to Romy getting sick. I also hounded the Dr.'s while in the hospital saying my other son 'CORSA' had the same symptoms the week prior. Probably 4 Dr.'s told me Kawasaki's wasn't contagious! Are you kidding me? With CRP at almost 26 and an ESR at 20? They should either have been immediately looking for lyme disease or RF. The Anti-DNAseB should have driven them to RF. Amazing. I'm not sure whether it is the exotoxins, certainly some of them act as super-antigens and recruit/activate 20+% of T-cells. With that many activated T-cells all sorts of things can go wrong. Why I'm asking about the emm-type is I think this is likely a key that may even help us determine the right exotoxins to track. I wonder if we could recruit Ed Kaplan at WHO to run emm-types on culture samples... He was the one who found that GABHS changed its M protein expression when moved from person to person. Perhaps there is something going on there. Buster

You know Buster, they completely over looked the results back in 2007 - Immunologist in SF out of CPMC. It took Dr. Lewis mentioning it to me to get the formal diagnosis.... The problem is RF is not on anyones radar. The poor kid has been complaining of joint pain for two years..... lately looking like he could be diagnosed with Asperger's, held back in Kindergarten, etc. Thankfully, he was treated by Dr. K last week. Lewis said he would have treated him but my friend was unwilling to wait to see him. I think she will following up with Lewis in the next couple of months for similar reasons. Dr. K, as well as, Madeleine are very interested in the connection. Plus there might be a fourth boy at play date who is now also PANDAS. They are still testing him so won't know for the next couple of months. Currently, I've got an e-mail out to Madeleine to determine if its RF in one person can the EXOTOXIN produce the disease in another.... i.e. Kawasaki's. Not sure she'll know the answer. -Wendy That's a really significant C-Reactive protein level, ESR and neutrophil level. He is having significant inflammation going on. It would be consistent with RF (especially with the CRP and Anti-DNAse . Wow! I see now why you are taking these three cases in together given the RF and KD... wish they had done an emm-typing. Buster

Doug, also get a copy of those labs run. I was told my younger son's labs looked great when in fact they are very indicative of auto-immune or immune deficiencies and pediatrician didn't understand them. What labs did you have done? -Wendy