3bmom

I agree with searching for help. Valacyclovir would of kept us out of the hospital. We had immediate results but not the die off symptoms her child is having. Just some fogginess. We didn't have IGM but our IGE was over 16X normal. Our Dr was trained anything over 4x higher treat as active. In 6 months the titers were normal and behavior stable.

Our only positive swab was onset. At the west coast symposium they mentioned sinus, urethra and anus as areas with strep. After reading material I would try antibiotics and chart improvement. Hugs for being so quick on this.

The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed. I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past. I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube. Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients. Augmentin also decreases Dopamine and Glutamate. Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve. Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases. She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease. Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else. Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this. The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions. She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases. As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year. Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS. GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah! Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too! The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store. I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.

Found the article! http://www.wired.com/2014/04/how-flesh-eating-strep-bacteria-evolved/?mbid=social_fb

Could be a stronger strain. I just tried to find an email from Beth Maloney in regards to a strain with a virus with strep. Will keep looking. Have you tried a combo abx and antiviral?

Love how you say even God could not sway him...isnt that the truth! I know it isn't parenting style! I would check for a new infection in the household or mold. Sometimes it is hard to know if the stress of PANDAS is rendering the house more dysfunctional or strep is around wreaking havoc. Vicious cycle!

If I remember correctly, (this can be challenging)there is a bar on the right as you pass from the lobby and then farther down on the right a restaurant. Should we plan on meeting for dinner Friday night at 6:00? I will wear a pink sweater so you can find me. ;D I also agree about the Rheumatologist. I always say PANDAS is rheumatic fever of the brain. So much simpler to grasp.

I have to agree that you should check for infection. Sounds like he might of gotten sick a few months around the same time as fears set in. Now you are at a higher intensity hence he is ignoring authority at school. We have a lot of ODD with PANDAS. I think the opposition goes with the rigidity of some obsession or irrational thought. For us the frequent urination is also a clue. How is his writing and math? I am sorry to think this, but on the bright side eliminating ODD will make your life easier.

I want to add that Amy Yasko , (I think since I read so much) mentions if there are vitamin deficiencies mainly zinc you will have poor colonization of all the good bacteria. That goes back to us all being a different tapestry and what works for one doesn't work for the other or is more difficult to get same results.

Searching_for_help, My Dr only tested IGG titers but they were so high he said I must be IGM positive. My DS IGG titers were 5x higher. Our Dr. treats any titers over 4 fold. He says this is how he was trained in the 70's. He said the CDC changed the rules in the 80's and I have met Dr.'s who say they don't mean anything. How come as the titers are treated they drop and also we have a drop in behavior! Think this is a major clue being ignored in Autism! I think PANDAS/PANS is a Venn Diagram with Autism.

Thank you for the info. I just started reading Amy Yasko's book and I believe our kids are severely vitamin deficient leading to chronic infections. Vitamins also support the colonization of good gut bacteria. Glyphosate pesticide heavily in our food, especially GMO processed food acts as a chelator on essential minerals. Love to know if this is why vitamins are so beneficial in recovery.

Valacyclovir is an antiviral which helped us as much as an antibiotic. I have posted previously on this. This medicine is also very helpful in MS and Alzheimer's. We had high titers to HHV-6 and they dropped to normal correlating with a drop in behaviors. Some believe it may help other viruses that may not have been identified.

http://articles.mercola.com/sites/articles/archive/2014/04/22/glyphosate-herbicide.aspx?e_cid=20140422Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20140422Z1&et_cid=DM43473&et_rid=495029106

I suggest you read the posts regarding gluten and dairy. Issues are not always related to allergies. The food contains heavy levels of pesticides, and gut altering DNA which contributes to getting and keeping chronic infections. If you have improvement and have been able to go off, (great job,a difficult task) I would stay away. Watch on Netflix "Genetic Roulette" and you will understand rising health issues including diabetes, obesity etc.

I am going to the conference this weekend at the San Francisco airport. Anyone going?

Thanks SF_mom. I think this is one of our issues too. Who orders your tests? What kind of Dr?

It is a catch 22. Gluten can create the impulse control issues but also is addicting due to the opiate effect. A great book for anyone to understand the changes in our wheat supply and health and mental issues is "Grain Brain". They also spray heavy pesticides at the end of growing which doesn't get washed off creating additional problems. Don't beat yourself up. Look at how much you have changed. A behavior chart for good choices in eating may help. I found I had more stomach issues when quitting. I think as you eliminate an overload your body starts eliminating other things like toxins, infections etc.

Cara, C-sections may contribute, (I had 3) but it is more the change in our food supply. All 3 of mine were really healthy for awhile which I don't think would be the case if gut was bad from the start. GMO food allows round up pesticide to be sprayed directly on a plant at levels never tested. Round up is an antibiotic killing beneficial soil bacteria, then it also kills our gut bacteria using the same pathway as weeds. This sets us up for chronic infections and a dysfunction immune system. My post on Innflamation and Neurological pathways will explain how the end result is mental issues.

My son had low myco titers and I was very high. Neither of us has any symptoms. He is already on abx. When I started getting treated his behavior improved and then when we checked his blood work, (every 6 weeks) and his titers finally went down after over a year. I encourage all family members to test.

I wondered about this oil after hearing about the positive effects on seizures. So excited for you! Thank you for keeping us all posted. ;D

Definitely talk to Pediatrician and ENT. My guess is the tonsillectomy allowed more strep to be released. I would address aggressively and follow up with blood work for titers to see if it drops.

I understand how hard it is with the OCD to get them to eat right and then you get stuck in a vicious cycle. The food he is eating will exacerbate the OCD and round and round you go. My DS wouldn't eat any healthy food because he wanted to stop growing taller. The poor quality of food is toxic creating more Glutamate in the brain, more gut issues, more methylation roadblocks, supporting infections and wreaking havoc with OCD. He lost 30lbs in 2 months. At 13 he can read books on health. Here we let the OCD work to our favor until stabilized. This is a fine tight rope to walk. Our Dr. won't treat you if you don't follow diet but he also addresses infections. When we went Non GMO and Paleo his immune numbers dropped drastically and behavior improved. GMO food is ladened with untested levels of pesticide which are neurotoxins. GMO's are in most fast food and processed food. They also create an addiction cycle hence the difficulty getting off. GMO's also disrupt serotonin for more anxiety and disrupted sleep cycle. Check for infections too. Sounds like a double whammy. When infections were addressed he became so much more rational and then understood importance of diet.

Our Dr. addresses infections first along with diet. Once stabilized he puts you on an SSRI to bring more blood flow to the brain. He uses NeuroSpect scans to observe improvement. Following this protocol we didn't experience adversereactions which can happen in PANDAS kids. We are on Zoloft. I see our kids as highly sensitive whether a medication or a vitamin. Low and Slow seems to work best.

I just read somewhere that allergy drops should help as opposed to the shots which might send them into a flair. Very interesting. Keep us posted

Nancy you do have a wonderful ability to explain how irrational this disorder is. My DS looked like a homeless person too and he chose to go to school because he wanted to see his friends so much. Just thinking about it makes my stomach hurt. He also chose not to eat because he didn't want to grow taller. Lost 30lbs in 2 months. When he was at one of the top hospitals and they told me we had parenting issues I asked if he had showered in the 4 days under their watch....They hadn't even noticed he had not taken a shower or taken his hat off where he hid a rats nest of hair. They also failed to notice he only ate ice cream because everything else tasted weird, which I later learned was just food with protein in it to "Make him big and strong",so he avoided it. Talk about irrational. Later after 3 infections were addressed with abx and antivirals, along with diet, he cut his hair and started a new chapter in his life. An earlier flare we had no Dr. and did CBT. It is amazing too. I think the combo is a great step to healing.