sf_mom

One child potentially two... Our 5 1/2 year old PANDAS boy is doing well and almost symptomless 5 weeks post IVIG. You can find the Micro Minicry Article link on the first page of pandasnetwork.org

There is truly no test a pediatrician can provide you that will concretely tell you PANDAS or NOT. You can check ASO and Anti-DNAse-B to see if they are elevated and perhaps secure antibiotics. BUT, in most PANDAs children the ASO and Anti-DNAse-B are not elevated. In my son's case, ASO was positive and Anti-DNAse-B negative. Sometimes it is ONLY the first strep infection that creates the cross-reactive antibodies that will continually attack the immune system/brain/joints/heart when the child has a cold, virus, bacterial infection, allergies. The only true way to know is by requesting a test kit from Madeleine Cunningham and testing the level of CaM Kinase Protein activated in your child. Those results will tell concretely if your child falls within PANDAs range... then you must consider the clinical picture and how you'd like to pursue treatment for your child. I recommend reading Pandasnetwork.org 3 times until you understand the information. You've got to understand the science to be your child's best advocate.

Should be no problem... my son had been on antibiotics for about a month and was 11 days post 5 day steroid burst. I understand the steroid might have some impact but his score still came back within PANDAS range.

The CaM Kinase it a protein in the blood that is activated by cross reactive antibodies related to strep...... dense reading http://www.pandasnetwork.org/Cunningham.NMpaper[1].pdf. The protein measurement will allow you to determine if your child falls within the PANDAs range, if it at all. You receive the kit from their offices, take the kit to your Pediatrician, get a lab request to draw blood in accordance with instructions, take to lab, draw blood and lab will spin blood, keep on ice pack and ship over night back to Kathy at Madeleine's office. Its a fairly simple process and about 3 weeks you'll have results. They will not be taking samples after November 12th because they are shutting down for the winter holidays. So I recommend you request today. Don't be scared as this could the answer for your child. Keep reading the posts under PANDAS section, read PANDASNetwork.org 3 times until you can process all the information. Understand the science. FOR SOME it is only the first strep infection that kicks off the auto-immune response and keeps attacking their immune system with each cold, virus and bacterial infection.

Fantastic.... One more Dr.!!!!!!!!!!!! Yeah. Azithromycin dose seems light but if he is willing to do IVIG your are in good hands.

Its PANDAS..... Call Dr. Kovacevic's office and request a consultation and please request kit from Madeleine Cunningham for CaM Kinase testing. Kathy at Madeleine office can forward kit: Kathy-Alvarez@ouhsc.edu

I give my other two kids http://syntrion.eu/usa/products/syimmune-tablets to boost immune system..... two tablets per day, 3 if they are sick.

Congratulations on completing IVIG. What antibiotic, dose and weight is your son again? Post IVIG we had our son who is 43 pounds on 500 m.g. Azithromycin for one month due to his brother and sister having the flu twice during that time period. He did not get sick and he became almost completely symptomless by week 4. He is about 98% currently. We lowered his daily dose to 375 m.g. daily on the 23rd and he continues to do well even with one major bout of diarrhea 'stomach bug' he got from his brother and sister. We will attempt to decrease the dose again in another month depending the situation 'illnesses' at his school. Initially, our son was very hyper post IVIG and saw flairs of symptoms throughout the first week. BUT, he was definitely more reasonable immediately. -Wendy

I'll be praying there is no response and will anxiously await your update. Perhaps we could start a topic for vaccinations/flu shots and post only if you have vaccinated or gotten a flu shot and if there was a response within 1 month following or no response that is filed in the Helpful Threads as a reference.

Please spend some time reading up on PANDAS but to put it simply. Comments from both Swedo and Cunningham: 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." Thank You for your reply. Yes the strepo test was a rapid 10 min results. he has had strep many times and it usually does appear on that test. Since his dad has ticks I didn't think that it would be Pandas but torrette. But I will take a look at it. Thank!! Many children with PANDAS have a "genetic vulnerability" to TS or OCD. My dd has PANDAS with severe onset OCD. We have a lot of OCD in our family, but hers is clearly PANDAS based, and is treated with anti-biotics and steroids. It could be either, but it is worth looking into it, especially with your strep connection. What are some of her severe OCD signs. When he had strep back in Feb he went back for a retest with the swab of the throat which takes 10 min for results and it came back negative. Could it still be Pandas? I read other posts where their child will not go outside or not sit still during dinner. This is not how my son is. There was a major family change for us with me losing my job and that is exaclty when he started acting very anxious and was a completly different child until I spoke with him and he told me he was worried we would have no money. I reassured him and he seemed alot better. Though he is very anxious about things still but nothing like he was that week. I though that because of the axiety he went through it will take him a little bit to shake it off. He is very sensitive and tends to worry alot. He is shy with strangers. I was thinking because of his allergies he might have some sensitivities and was thinking about getting the IgG test. I am really confused now. What are the major signs of Pandas? Sorry for blabing on and on. Thank You for the replies!!!

Ameecram: How did the test for PANDAS come back negative?? There is no test...... If the ASO and ANTI-DNAse-B did not come back as elevated you should know THAT THIS IS COMMON IN PANDAS children. The only reliable way to concretely know you child is PANDAS or NOT is to have the CaM Kinase protein measured via Madeleine Cunningham University Of Oklahoma and involved in original Swedo Study for PANDAS. PLEASE, PLEASE, PLEASE check into PANDAS further as we are having great success with many children that have early diagnoses. Please also check PANDASNetwork.org for history of TITERS and introduce yourself in the Pandas Section of this forum. THAT GOES FOR YOU TOO san70. Faith who frequently posted here, her son is 10 and misdiagnosed for 7 years. They just got their CaM Kinase Score back of 179 which puts her son in the upper end of PANDAS. PLEASE READ COMMENTS FROM BOTH SWEDO AND CUNNINGHAM ABOUT POSSIBLE TRIGGERS AND PANDAS. 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." -Wendy

Can you keep us posted and let us know how it goes...... I think it valuable to have a history of responses to vaccination/flu shots that help us weigh the decision in the future. I am still waiting to hear how Alex is doing post revaccination Mom2Alex's son. I pray you have no ill effects giving us all confidence down the road. -Wendy No, Meg does not have any unusual conditions (well, except for PANDAS!!!! ). Again, I totally respect all the points made above. We are on antibiotics, we can get Prednisone any time we need it. We have not done IVIG or PEX. And I am not a doctor myself. Dr. L's advice (I assume) was for us specifically, and I am sharing it as that only, so that others can consider and counsel with their own doctors. Honestly, the advice completely startled me - and I did a 180 as well. Everyone will have to make the best possible decision for this - but since I changed my mind I just thought it fair to share the info that I have. I love that there are educated folks here to help balance the pros and cons and help others make the decision. For me, the risks of not getting it will outweigh the risks of getting it, and I will have to live with that decision. Best - Susan

DCMom: I would say focus on an IVIG treatment and antibiotics to get Julia through the winter months this year. Rather than vaccinate with flu shot. As you know: There have been several children who have had a PANDAS flares post PEX due to flu shots BUT I think some with first hand experience can speak to this more directly (Mom MD, another prior post). Dr. K is NOT recommending it for our son especially NOT NIHI. http://www.latitudes.org/forums/index.php?showtopic=5647 Perhaps if you speak to Dr. L suggest that you would like a 5 day steroid script on hand in case your daughter runs a fever. This has worked very effectively for some.

Also if the child is post IVIG the child should be fairly protected due to donor antibodies AND could potentially render the response to vaccination useless. With our younger son, we had to postpone any vaccinations until he was one year post IVIG.

Great image... REMINDER Madeleine said rash is not always present at on-set... 30% of cases. 2006--The first time ever that strep was in my house my son was 16 mos and broke out in hives...rapid strep was positive...there really were no other signs of it...the ped said his throat looked a little red, but not like strep, and he swabbed it to be sure...he was a little surprised it was positive. Like SFMom, I too, have come across "erythema marginatum" as one of the symptoms of RF...but I don't think it is strictly limited to RF...it is known to be caused by strep. The following link takes you to a picture. I looked it up on wikipedia, and hit the photos link http://www.your-doctor.net/images/cardiova..._Marginatum.jpg This website also gives a good description of it at the bottom of the page. http://www.fpnotebook.com/CV/ID/ActRhmtcFvr.htm

Jen, It sounds like PANDAS to me. With the Cunningham kit you will receive two tubes. They only really require 10 cc of blood, one tube. So what I would do.... is test both your kids at same time, same kit. It won't be a problem.... just Kathy at Cunningham's office know you are doing this when you send kit back. AND, I say bring both your boys to Latimer consultation. She will understand. -Wendy

Fantastic! Keep us posted.

Our son had his first TIC at 4 1/2 and did not realize what it was until he had a full blown episode at 5 1/2.... We think he was exposed to RF and got very ill at almost 4 and a delay response at 4 1/2 when he got his first TIC similar to SC. We are now having our younger son who is 2 1/2 evaluated because he also took ill at the time, treated with IVIG but no antibiotics and diagnosed with Kawasaki's but did exhibit all symptoms. The diagnoses was made only after there was heart involvement and it could have easily been RF. He is showing signs of OCD but it could also just a TWO year old thing. I think the most concerning symptom for me right now is the puffy eyes and dark circles.

This is taken from my e-mail correspondence with Madeleine Cunningham yesterday. When she is referencing OTHER THINGS she is talking about IVIG AND PEX. 'I hope this helps some of the confusion. Group A strep are sensitive to penicillins while the pneumococcus is less so and should be treated with other drugs such as azithromycin and other things that will take care of it.' The pneumococcus strain carry the M1 and M18 strains of bacteria that were present in both Utah outbreaks of RF in 1986-1987 and 1998-1999 Which is a really difficult bacteria to eradicate from host. http://www.genomenewsnetwork.org/articles/...c_bacterium.php We had our son who is 43 pounds on 500 m.g. Azithromycin for 4 weeks post IVIG and have recently lowered him on the 23rd 375 m.g. and is remaining almost symptomless... I like to say 98% better because occasionally I notice a brief TIC. This last week he came home twice with his name written in a mirrored fashion (backwards and reads perfectly in the mirror) both his brother and sister had been sick last week and two days ago he had a bad bout of diarrhea similar to his brother and sister. I agree with EAMom if Augmentin does help within the next month try Azithromycin.

Manda, While investigating Rhuematic Fever... I remembered reading something about a pink spidery rash. This was taken from the first website I looked at this morning trying to find it for you "rash - a pink rash with odd edges that is usually seen on the trunk of the body or arms and legs." . Additionally, my correspondence with Madeleine Cunningham yesterday, she stated the following. In her last sentence, she is referencing RF bacteria and when she states other things, she is referencing 'IVIG and PEX'. In a prior e-mail, she talked about the rash not ALWAYS being present at on-set RF. Again, RF is not on any Dr.s radar currently. I truly believe PANDAS, is SC, is RF just different phases, presentation. If you investigate RF further you'll find RF lists SC as a symptom. Also the study out of Rome, indicates 58% of the kids they studied with strep triggered TIC illnesses had heart abnormalities. We all know our kids complain of joint pain. Madeleine reviewed the study and responded by saying she had worked very closely with the individuals in Rome and that their work is highly regarded. Also the study regarding the outbreaks of RF in Utah clearly state the M1 and M18 strains of Bacteria are difficult stains to eradicate from host. Essentially, wiping out immune system. Dear Wendy The Scarlet Fever is caused by group A streptococci (Streptococcus pyogenes) while pneumococci are Streptococcus pneumoniae. They are very different organisms. Children do not respond to the pneumococcus due to the underdeveloped immune system which improves as they grow older. The Scarlet Fever is a rash and desquamation of hands and tongue sometimes if a bad case of SF. IT IS NOT RHEUMATIC FEVER which is an autoimmune disease following group A streptococcal infection and has nothing to do with the strep throat and scarlet fever symptoms. Unless you are diagnosed with a pathologic immunodeficiency, your immune system may just be underdeveloped if you are in the low end of normal. Group A strep are not resistant to the antibiotics but can get in areas where there is not as much blood flow to deliver the drug. In that case you might be able to carry the organism in the tonsil or sinus where the antibiotic may have not reached. Doctors may give a large dose sometimes to get the blood levels up to kill organisms in these areas but it is the reason for taking out tonsils etc. I hope this helps some of the confusion. Group A strep are sensitive to penicillins while the pneumococcus is less so and should be treated with other drugs such as azithromycin and other things that will take care of it. 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 email: madeleine-cunningham@ouhsc.edu ________________________________________

Our son's CaM Score was 124.... he was 11 days post 5 day steroid burst and it might have lowered his score. At 124 he presented with TICs and mild OCD. We did IVIG about 5 weeks ago and now is 98% better. You are heading down the right path for your child.

Our son's CaM results were 124 and all other antibodies were fairly normal... One might have been slightly elevated after 3 hours. Anyway, he was 11 days post 5 day steroid burst and might have had some impact on results. I think CaM results plus clinical picture are equally important. Even with those numbers our son was TICing away. Our son is five and currently 98% better 5 weeks post IVIG. -Wendy

Judy, So sorry your son is sick, I 'we all' understand, as you probably know.... I'm angry too. Hopefully, tomorrow we'll find the anger that turns into motivation. You are on the right path to getting your son help. -Wendy

Faith, OK, OK.... you made me laugh. As for our 2 1/2 year old, its hard to say but knowing what I know I can't just chalk it up to being two anymore. Thankfully, our Dr. and my husband agree so we tested: ESR, CRP, ASO, ANTI-DNAse-B, STREP PNEUMOCOCCAL ANTIBODY TITERs and forwarded blood samples to Madeleine Cunningham. I'll take the hug.

I enjoy the humor too....... Its just me, I'm the angry one today. I apologize if it seemed as if I was upset at any one comment. Its not the case. I just had to go to the Dr. with my younger son this morning to run battery of tests to confirm RF/PANDAS or not and I think the possibility of my other son being sick too is throwing me over the edge.