sf_mom

I agree and already submitting 'Saving Sammy' to the Dr. OZ Show last week.

When my younger son had Kawasaki's he was extremely ill. I think he had been in the hospital for 4 days with a fever of 103+ before IVIG was administered and he bounced back within 24 hours. I would have never believed the change in him had I not seen it with my own eyes. It literally saved his life. IVIG is often used with very, very, very, ill children. You have nothing to fear if he is ill at time of treatment. -Wendy

I didn't like the entire article because it discouraged use of antibiotics

EAMom I concur: Taken from the other article I posted earlier..... Swedo's comments Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

Thanks SF Mom--but where did we get this impression from I am wondering? I am not sure I have seen this stated anywhere in the research by Dr. Cunningham. Thanks for the input. I think the information has been ingrained in my head through interpretation of studies by others and my attempts to understand it all. However, I think I might need to correct myself because it is specifically group A streptococcal. Anyway... hopefully the paragraph taken from the article 'Antibody-mediated neuronal cell signaling in behavior and movement disorders' published in 2006 by Christine A. Kirvan a , Susan E. Swedo b , Lisa A. Snider b , Madeleine W. Cunningham c ,⁎, 1 Gives you the information you are looking for... I have also e-mailed Dr. Cunningham on occasion and she had always been very receptive and responsive. Our hypothesis is that antibody-mediated autoimmune mechanisms as well as infection may contribute to the pathogenesis of some movement and behavioral disorders. In SC, group A streptococcal infections induce cross-reactive antibodies that deposit in the basal ganglia and lead to CaM kinase II activation in neuronal cells (Kirvan et al., 2003). PANDAS sera were found to induce significantly higher levels of CaM kinase II activation than sera from non- PANDAS OCD, tic, and ADHD groups not associated with streptococcal infection. In fact, PANDAS patients diagnosed with isolated tics produced the highest level of CaM kinase II activity similar to chorea. Although we do not know exactly how disease producing IgG antibodies cross the blood–brain barrier, we can suggest that infection or the antibody itself may affect the blood–brain barrier.

I of course didn't like the entire article because it discouraged use of antibiotics http://www.christianpost.com/blogs/health/...c-09/index.html

How Does Strep Lead to Psychiatric Symptoms? The discovery of PANDAS came through observing the reactions of patients. Initially, Swedo's team noticed a group of patients who were ill with infections and then suddenly developed dramatic psychiatric symptoms. At first, they were not sure streptococcus was the culprit but research soon isolated the strep antibodies as an important focus of interest. PANDAS is controversial in medical circles with some physicians questioning whether such extreme psychiatric symptoms can be triggered by strep antibodies. However, according to Dr. Swedo, there is little doubt that the body's efforts to fight the strep bacteria set off a chain of events leading to PANDAS symptoms. "The science is clear now," Swedo asserts. "We not only have a direct relationship between the anti-strep antibodies and the anti-neuronal antibodies, but also have demonstrated that the antibodies interact with receptors in the brain that could produce the symptoms observed." Normally when the strep bacteria enter the body, they defend themselves by mimicking healthy cells and elude detection by the immune system. Using the stealth strategy, the strep bacteria create an infection. In response, the body naturally creates antibodies - cellular components designed to find the bacteria, bind with them and direct the immune system to destroy the bacteria. When this happens as designed, the antibodies find the strep bacteria and the immune system wins the battle. However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion. Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

My understanding is that the CaM Kinase Protein is only activated by Streptococcus Bacteria. However, there are many stains of streptococcus and I don't think the results are specific to only streptococcus A.

My son presented with mostly TICS mild OCD. I think I would have missed the symptoms if the Dr. had not pointed out what OCD behavior was to me over the phone.

Again, I think you are ABSOLUTELY heading down the right path for your daughter especially if she is 9. I understand your perspective, regarding Dr. K..... I think he has been treating, treating, treating and not paying much attention to the immunological side of things. AND, of course the immunological deficiencies in the STREP PNEUMOCOCCAL ANTIBODY TITER is a fairly new but consistent link that he is unclear about at this time. I am actively pursuing monthly IVIG until ALL symptoms subside, immune system is boosted and PANDAS is a distant memory. I would say that 'sudden on-set' is less likely the case or first exposure. Our son was exposed to Scarlet Fever, got really, really sick and went untreated..... six months later he got his first TIC of a cough/clearing of throat (delayed response and potential re-exposure to strep similar to SC) that we were never able to eradicate fully. Almost exactly one year later from start of cough we had our first full blown episode of TICs/mild OCD or as some would say a 'sudden on-set' from strep throat. You made me laugh about sticking a line in her arm today if you could. I know the feeling..... OUR KIDS DON'T NEED TO BE THIS WAY, THEY ARE JUST SICK. THERE IS A TREATMENT THAT IS WORKING!!!!!!!! Some may need more help then others........ BUT I WANT TO SCREAM IN FRUSTRATION 'JUST HELP' -Wendy My daughter is 9. Thanks for the vote of confidence in doing it again on Weds. I feel like sticking a line in her myself!! Right now!! Believe me, if I could, I would! I don't know if Dr. K is all that familiar with the immunology side of this...and I mean no disrespect, but it's just not what he does primarily. I think he mostly deals with kids who have been developing normally until age 5, 7, 8...whatever, and then get the sudden onset. In our case, it's a different sotry, and we feel he immuno system was compromised a long time ago, and we gotta get that fixed.

I concur with everything EAMom said.... Our son who is 5 1/2 is 3 weeks post IVIG and we have seen a huge improvement in all categories. His CaM Kinase score was 124 but blood draw was 11 days post 5 day steroid burst which might have lowered his scores. His only remaining symptoms are currently TICs. We had a couple of TIC free days but they seemed to have ramped back up a little over this past weekend with humming 'a little' while eating, occasionally blowing on the back of his hand or eye blinking. We are monitoring very closely to see if it subsides.... or just part of saw tooth recovery.

Coco, Congratulations on finding your daughter the right treatment and her current successes!!!!!! I absolutely think you should move forward with the monthly IVIG. I have an e-mail into Dr. K this morning regarding the topic of immunological deficiencies and potential further IVIG treatment. I just know you'll see great success. How old is your daughter now? -Wendy Hi Elizabeth, We are seeing good progress since our first two-day ivig treatment with Dr. K. We are at the 8-week mark right now. The healing has been sawtooth. There are up days and down days, but the ups are longer and the downs are shorter. Tics and OCD are now about 50% better. Let me share a little history before I continue with recovery stuff: My daughter was diagnosed with pddnos at age 5, after many doctors couldn't really come up with a diagnosis that was solid. We were uncomfortable with that but had no choice at that point. According to Dr. K. and her immunologist we realize now that she most likely has had pandas since she was 2 years old. She had many ear infections as a toddler, but was never tested for strep. Ever. In her case, the "sudden onset" was failure to hit developmental milestones...not terribly obvious, but subtle things that we would notice. She also developed what we now know were OCD tendencies, i.e., could not walk on mats, had trouble running straight across asphalt as it changed to concrete (color difference) and she carried a little red lego with her wherever we went...for years. I had red legos in the car glovebox, in my purse, coat pockets...you get the picture. She also failed to develop fine motor skills very well and her language was behind. She was fearful/panicked over the strangest things, pegboard holes behind supermarket shelving, men with beards, etc. Very sensitive to noise. She was also diagnosed with mild MR, which we feel was not true either. Outside of standard testing she was bright and quick in so many other areas, but alas, that's not taken into anyone's consideration. She was also very connected to people and had great eye contact. In the past three years the OCD became more and more debilitating. Tics stronger and longer. Family life was falling apart. This child of mine was turning into a person I did not know. If pandas has not come come along we were headed for psycho drugs and who knows what else. So, here is a little girl that has had pandas for most of her little life. The big mystery here is does ivig work as well for kids who have had it for 7 years? How far can we bring her back? Are the learning disabilities related to all the malfuntioning in the basal ganglia? I asked Dr. K. where does the PDDnos stop and the Pandas start, symptom wise? He told me: "You tell me!" He believes that all this pddnos garbage is all pandas, to a great degree. A year and a half ago she was hospitalized for a URI. Given heavy IV antibiotics for 3 days in hospital. When she came home, it was unbelievable. ALL sypmtoms were gone for several months. School could not believe the change in this girl. Learning concepts were being introduced and mastered in a week, which used to takes months. That was a good run for all of us. Then she got another infection, and bam, right back where we were. No one in the hospital ever did a strep test. No one mentioned Pandas. Her pediatrician wanted to put her on depakote....I revolted. Some of these doctors truly do not know what they are talking about. Some numbers: Her CamK was 188. Her DNASE was 965. Her ASO titer was 295. She failed 13 or the 14 pneumo strep 14. She failed the tetnus and is borderline fail on Lyme's. Her IGG subclasses were passing 1 and 3, failing 2 and 4. Her immunologist diagnosed her with SAID, "Specific Antibody Immune Deficiency" and recommends ivig monthly for at least 6 -12 months. Dr. K. wants us to wait for another month before trying another ivig. Our immuno says if it was his daughter he would do it now. We feel like we have wasted enough time already and are scheduled for this wednesday to do another treatment. we finally got insurance to cover so I think we would be foolish not to go ahead. Sorry for the l-o-n-g post...believe me I could go on forever We saw Dr. Leckman at Yale, and her referred us to our immuno, who is a livesaver. you guys gave me Dr. K!!! I feel like I should put this on a separate thread because I am so interested in communicating with parents who have a child with a similar diagnosis. I did chat with one gal whose daughter was the same as mine and is now FULLY RECOVERED, she did her ivig with Gupta. But, sadly, I have not heard from her in a while. YOU PARENTS have been a Godsend to us! I owe all my knowledge and awareness to each of you!!! hugs to each of you, coco P.S. Her handwriting is now AWESOME and she always had horrible handwriting. That in and of itself is a miracle!!

Debbie, I know Dr. Kovacevic will treat based on those numbers and clinical picture. Don't give up on the possibility for your daughter... as the tide with the Medical Community is about to turn for PANDAs but unfortunately you don't have time to wait until that happens. -Wendy SF Mom, I agree on treating this aggressively, especialy since we have suffered with this for several years now. I just have to get the doctor to agree! Debbie

Anti-DNase-B rise 8 weeks after infection..... if at all. My son's were negative. started biotics on 4/7/09 for 14 days could tell wasn't getting better...is it right that they are not making anti's stong enough felt things weren't reacting the same tried to get docs to extend bx's ....no go did blood draw on 4/22/09 exactly 14 days after start could that be why aso came in at 71 and it says DNA(DS)anti <1 in range.....did they do the wrong test on that one am i correct that that these may not be meaningful COULD it be some other bacteria??

You can not get CaM Kinase tested from anyone other than Cunningham that I know. Yes, the CaM result is the most important.

I would definitely consult with Dr. Kovacevic or Letimer. Its obvious that antibiotics are no longer doing the trick...... With the Cunningham's results Dr. Kovacevic and Letimer will be able to make a better judgement on his condition and the most appropriate treatment. Kathy from Cunningham's office is sending me a kit out today for follow up on my son and understand they will not be testing Thanksgiving through January 3rd so don't hesitate to contact them immediately.

My son takes the following per Dr. K. MORNING: - Omega 3, 6, 9 Junior; 2 Capsules - Ester C 250 mg - Vitamin E 100 IU - Multi Vitamin, Whole Foods Gummies includes 200 mcg Folic Acid - 250 m.g. Azithromycin NIGHT: - Calm Kids - Pearls Probiotic RECOMMENDED DIET - Emphasis on TRYPTOPHAN-RICH DIET, which includes Cow's Milk, Cottage Cheese, Egg White, Spinach, Egg Yolk, Beets, Turnip, Soy and soy milk, Hazelnuts, Barley, Rice and Dairy Products, Bean Sprouts, Cauliflower, Brussel Sprout, Potato, Wheat, Oats, Rye, Meat and Meat Products (especially turkey). Prior to IVIG we were attempting Gluten Free Diet but have abandoned that based on the above recommendation. -Wendy

Well the connection is strong in our case between what appears to have been Scarlet Fever and Kawasaki's!!!!! Dr. K seemed to think it was possible that the Kawasaki's was an extreme presentation of PANDAs. The symptoms are very similar between Scarlet Fever and Kawasaki's. There is two unique symptom in Kawasaki's that is not typical in in Scarlet Fever and that is pink eye 'AT IT EXTREME' in both eyes and the attack on the heart ventricles. AND, you know about the study out showing Strep related TIC Disorder and a high percentage of heart abnormalities... hence the connection from Kawasaki's to PANDAS. Do you know if your friend's son was treated in the first couple of days of high fever? I bet anything if he wasn't that is the reason for his current OCD. Typically, children are so sick when they have Kawasaki's they end up in the hospital and are treated with IVIG and sometimes it takes several treatments. For our son, he recovered within 24 hours after IVIG and seems to be fine but he is only 2 years 4 month old.

Its a relief to know your son is responding well to treatment!!!! Hope you are home soon from the hospital. Wanted to make a slight correction to your post. In our case I think it was contagious and believe the immune system got wiped out from trying to fight the bacteria over a period of time. Our Son: 124 PANDAS exposed to Scarlet Fever from Adrian at playdate, failed 10 of 14 serotypes Adrian: 147 PANDAS had Scarlet Fever at time of playdate, failed 12 of 14 serotypes. Our Other Son (was 5 1/2 month old at time): Also at playdate, got sick but treated with IVIG on day 5 of high fever. Thankfully he isn't showing any signs of PANDAS. -Wendy

Did you see a reaction to the prevnar vaccine at all? Flair in PANDAS symptoms? I'm fairly convinced that the kids with compromised immune systems need monthly IVIG to jump start their system. So sorry to hear your other son is now sick. How do they treat Strep pneumonia... will they be administering IVIG or do they just do straight high dose antibiotics. The thought of it possibly of it passing along to your PANDAS son is scary. I'm sure you know our story by now...... Son's friend had Scarlet Fever at time of play date 'both' my boys got sick, one ended up in hospital and treated with IVIG 5 days into high fever, my other son and friend went untreated and both are PANDAS now, both have compromised immune systems.

What probiotic are supplement are you using? Thanks for the article.

Fantastic News.... I am so happy you are seeing progress. We are about one week behind you with IVIG treatment and will report our update soon. One thing I wanted to mention, was my son complained of itchiness also when he got sick in June. I was actually rubbing Aveno lotion on him every night before bed to help. If it was a symptom when he got sick maybe its a sign of healing too.

Debbie, as you know my son's score was only 124 'lower range PANDAS' but blood was drawn 11 days post 5 day steroid burst. We made the choice to still pursued IVIG based on those numbers to potentially rid him of any hidden bacteria in his body, give his immune system a break from potentially further infections and kinda reset his system. Anyway, a score of 137 is not extremely high.......... BUT, again my thought has always been to hit it hard on the front end so potentially he may never have another episode.

But, if they have PANDAS, they HAVE to be making antibodies to at least some strep antigens or there would be no antibodies to cross react with the basal ganglia cells. My daughter has chronic strep and has some IgA and IgG subclass deficiencies, yet she passed the pneumoccus titers test (she responded after 2 vaccines) So, her body is able to mount an immune response to that, and yet can not clear itself of GABHS, and yet shows an immune response to GABHS (if the Cunninham tests are any indication. I just think there is not enough known about the relationship of the pneumoccal titer response to GABHS to make any definitive judgements. But, if failing that test gets you the treatment your child needs to recover from PANDAS...YEA! I concur.

Why couldn't there be a reaction to the strep pneumonai as well as GABHS as a trigger. Cunningham's test only measures the protein CaM Kinase that is elevated due to a streptococcal bacteria.... I'm almost certain the test isn't related to just GABHS. You know originally, my son was exposed to Scarlet Fever... he had never really been sick prior, had his first TIC six months later similar to Sydenham Chorea delayed response. He was is also reactive to GABHS. I don't think anybody knows the answer yet. BUT, I find it odd my son's friend who had the Scarlet Fever at the time of playdate and my son are both now PANDAs, both have STREP PNEUMOCOCCAL ANTIBODY TITER deficiencies.... specifically my son failed 10 of 14 and Adrian failed 12 of 14 and they are NOT genetically related. Our other son, who also got sick was treated 5 days into high fever with IVIG and appears to be fine. Our daughter, never got sick.... S. pneumonai favors males to females (not sure why). -Wendy