3bmom

Rachel, I am so excited you have gotten some answers. I just got our kits and will be sending them in ASAP. The info from heart fixer is a bit overwhelming but also fascinating at the same time. I think I will find some CBS issues too since I lose feeling in my legs if I take a sulfa drug. I find it confusing though since I feel so much better on a high protein diet. We don't have nut issues so we drink unsweetened almond milk. The chocolate is delicious especially in a smoothie. Just be careful with sugar. We also did rice milk but found out there are high amounts of arsenic in rice. Too much soy makes me nervous with hormones and a boy, not to mention most is GMO. After taste testing many, many ice creams we do love Trader Joe's brand with Organic Soy. Makes a good root beer float for a treat. Hemp is also good. A mom I know combines it with fruit, flax seed and freezes to make ice cream. Google recipes, lots are out there. The post I did today on Neurology and Inflammation explains that you don't have to have an allergy to Dairy and Gluten to have neurological effects. It explains so much! So glad for you! Keep us posted.

Benadryl made my non-PANDAS child want to jump out of a window. After having kids I too no longer tolerate these type of medications. The dye can also set them off. Our Dr. has me even wash off the blue dye on Valacyclovir pills. Our kids are hypersensitive to many things. I wonder if it has to do with their liver unable to break it down.

It definitely comes down to the gut. Please watch the video I just posted under inflammation and neurology. It explains why this next generation is falling apart. Pass it on too! Hands down we need to replenish bacteria and I for one feel caught in the vicious cycle. I have read that it is difficult to have recolonization if you are deficient in your individual tapestry of vitamins, especially zinc. Maybe someone with knowledge of this can pipe in. I think this is the same for fecal transplants. Maybe you need to match the patient with one of the 3 transplant options, although I will volunteer as a guinea pig for the super model one! Did you read the Forum article from the NIH on throat bacteria? I want to replenish with that but due to our kids auto-immune response, or imbalances, will it just trigger him? Curious of your results. Good Luck

I would call your Dr. right away. Our 2 worst flares were due to a sibling and his girlfriend ping ponging the strep around our DS. Found out my oldest is usually asymptomatic. I would do blood work on all the family including yourself.

This is one of the best articles I have read summing up the medical issues wreaking havoc on our children neurologically. It also goes hand in hand with the articles posted here in regards to missing gut biomes found in Autism, (ASU article) and the good strep bacteria in the throat, (NIH article) in the prevention of strep for PANDAS families. The author also talks about Gluten and Dairy as inflammatory contributors but not necessarily from an allergic response. The article gives me so much hope that we are finding answers. http://articles.mercola.com/sites/articles/archive/2014/04/17/psychoneuroimmunology-inflammation.aspx?e_cid=20140417Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20140417Z1&et_cid=DM42653&et_rid=490528222

I have always wondered why our 3 worst flares have all been April.

I have not tried this but am very curious. A gastro nurse I met at a charity dinner, (what a topic) told me they have great success with this for C-Diff. To me it seems logical that it would also help behaviors because of the brain-gut connection. The pesticide Round-up heavily sprayed on our food, especially GMO's, kills weeds via the same pathway as our gut microbes. It also chelates essential minerals so the weeds die. We get a double whammy, less good bacteria and less minerals to keep infections away.

One thing that was not mentioned is you don't have to be allergic to gluten to have inflammation issues. I would recommend the book "Grain Brain". Wheat, Rice, Corn are all heavily sprayed with pesticides at the end of the growing season to prevent molds etc. This is in addition to pesticides in the beginning for weeds. These pesticides with no limits for safety remain in their young bodies reeking havoc and causing the immune system to be perpetually turned on, later leading to an auto-immune dysfunctional state.

My heart is with you. We too had a terrible episode. If antibiotics worked I would definitely get on them again. We also had huge success with anti-virals. Dairy can cause explosive and angry behavior along with gluten. You will find clues based on what foods they want to eat, hence ice cream, mac n cheese, and pizza. I once met a mom who's 3 year old demanded a fast food milkshake and hamburger everyday. They get an opiate like reaction from the immune response and it is very addictive. What really jumps out at me is the increase in behavior at home. I would gamble on the fact your bi-polar child probably has an asymptomatic infection that is additionally triggering your other child. Both should have blood work done for infections and allergies. Environmentally any water/mold issues in the house? Windows upside down with no drainage holes at the bottom. New carpet, bed, pillow etc. Chemicals will also contribute. New pet? They can have allergies or strep. Sounds overwhelming and when you are in the heat of a flare it is very difficult to think. His immune system is overwhelmed so it has sent all troops out to attack and some are inflaming the brain. Each layer addressed reduces the load. Food is huge and unfortunately we can't stop eating. Our Dr. will not treat if you don't change food. Everyone approaches it in a different way. Organic as much as possible. I allowed sweet cereal with almond milk (we don't have nut allergies) until dairy cravings went away...then the sweet cereal went away. We had done Red Gatorade than switched to clear until we found out it had flame retardant in it. Soda has GMO corn syrup so we did Coke from Mexico, now only water. Once the craving is gone better choices are easier. He is younger so hopefully it will be easier. Playing and running can help too. A neuroscientist once told me it helps discharge some of the built up emotions. Lots of great info here. Breathe for yourself too it will help your son. Keep us posted and hugs for being a terrific mom.

I would love to know too! Just ordered a kit. We are on prophylactic abx an antivirals but hate it. Read where vitamins support the colonization of the gut and that means probably the flora in our throat for strep too.

Thanks for all the info. Wish I had a Dr that knows all this great info and treats patients. Our journey started in '05 when we had record breaking rain and a leak behind the window into the drywall where my DS plays...of course I have heard from multiple Drs that it can't hurt him.

What is POTS? Figuring it has to do with heart and I am curious since my non-PANDAS son,who has dyslexia and Irlen was told last month he has a heart Arrythmia. Rachel in regards to Myco my PANDAS DS is in normal range now. It finally budged after a year on prophylactic abx when I got treatment myself. Make sure all family members are checked.

My PANDAS son has tolerated anesthesia but was not under for a lengthy time. I agree with the comments from Rowingmom. Your innate immune system is creating chronic encephalitis due to dysfunction. I have had chronic fatigue for 30 years and when I was given valcyclovir for shingles, (by the way same dose as my PANDAS DS) I felt the best in years! Next step for both DS and myself is 23 and Me. Using epigenetics for personal vitamin supplementation along with Paleo non GMO diet will support the immune system to heal. http://www.walshinstitute.org This website has a lot of info how you may have had gene expression turned on from environmental factors showing similarity to your mother's health but not a genetic disorder.

Does Dr L check viral titers? I would think the amount of antibiotics should of eliminated a large amount of behaviors. For us Valcyclovir helped tremendously with viral infections while the antibiotics took out strep and mycoplasma. Have you eliminated gluten and casein? When the immune system becomes dysfunctional you want to eliminate all areas that may create stress so the body can heal.

Excellent article! I find this so true about Autism spectrum disorders too! I want to scream when I hear intelligent woman either say I can't do anything its genetic or the medical community has just "missed diagnosing" kids. First of all you scientifically CAN NOT have an explosion of a genetic disorder. Second how can you miss thousands of kids? We have gone from 1 in 10,000 to 1 in 50. Nutritionists like you are also getting fed up with no real direction in changes to help their fat, sick and tired patients. Fortunately they are educating themselves and are dividing into two factions. They are becoming knowledgable in regards to wheat being sprayed with pesticides during the drying process increasing gluten issues and learning that GMO's are pesticide driven crops. Dairy is no longer Grandma's dairy for good protein and calcium. A lot were kept in the dark due to Ag sponsored conferences. Hopefully this informed group will help our most vulnerable, children and the elderly, (Alzheimer). You put it brilliantly and it is time we all unite and demand changes to healthy alternatives that work instead of more money, for more research, for more drugs until it is to late and we realize we have lost a generation.

Great article! I figured out dyes were an issue for my oldest son 13 years ago and was the "joke of the neighborhood" when a mom constantly brought out her Costco container of red licorice. A food petition by blogger "Food Babe" might get some changes. She has tackled with success chemicals in Kraft Mac n Cheese, flame retardant in Gatorade, yoga mat chemicals in Subway sandwich bread, and hidden MSG in pizza. Mexico does not have HFCS in their soda. No wonder American kids have so many learning disabilities and behavior labels. For me it was blind trust in our FDA. After learning huge increases of pesticides on GMO crops was approved without testing I woke up and started researching and changing the way my family eats. Our power is in our spending. An 11% decrease in profits will make a company change its product. Mothers need to unite!

Here is a interview with Dr. Sanjay Gupta in regards to the canneboidal oil helpful for seizures. Wonder if it would help our kids? Wonder what changes you would see on a neurospect scan? Some Dr's believe the rage issues are located in the seizure area of our kids brains. I believe some parents have posted beneficial changes on anti- seizure meds. It also would be affordable....imagine that http://youtu.be/CiShwotFJR8

If Neuro is open he can prescribe antibiotics and antivirals and should. Low and slow. Our Dr says titers over 4 fold should always be addressed. She may want a PANDAS Dr.. I have an Autisim Dr who says it all is low grade encephalitis due to immune dysfunction. We have been on Valcyclovir for 2 years. Our titers dropped from a high of 16X normal to 0 in 6 months for HHV-6. This virus has been linked with seizures . Check the recent posts under Valcyclovir. From another angle our local news covered a story of 2 families moving to Colorado for legal marijuana. Their children went from 100 seizures a day to 2. They use a strain called "Charlottes Web" which is high in canneboid ,( CBD ) and little THC the psychological part. It is in oil form. I know nothing about pot except my college age son has a legal medical card for dyslexia (on his own) and is getting A's and B's in difficult classes like History with lots of reading. He says there is research to its effectiveness but pharmaceuticals are blocking it because they can't make any money and are trying to duplicate it synthetically. I think it would be worth looking into it. Just like supplements you would need to be careful about quality. Keep me posted.

April 26 ,2014 Embassy Suites San Francisco Airport Waterfront, Burlingame, CA Many featured speakers including Dr. Swedo Great opportunity to learn about your child's unique needs and meet other parents who "get it". pandasnetwork.org

I don't think so, maybe the same family. I was just wondering if anyone knew how this bacteria works and if it helps prevent strep and maybe our kids are now missing this protection. I think it is a balancing act because I believe I have read how very healthy guts have been shown to have also have large amounts of c-diff with no issues so "something" must keep it in check.

Hang in there. When we were at our worst and I thought I would shatter my oldest reminded me it is always darkest before the dawn. Have you tried Valcyclovir, anti-viral? Check for titers? Our Dr eliminates food before any meds. I wouldn't believe it could make such a difference if I didn't observe it for myself. It is not about allergies but the inflammation it causes. There is a great link under last weeks post about excess Glutamate in the brain caused by casein in dairy and gluten in our wheat. Hugs to you! My mantra is...and this to shall pass.

Don't forget food is a biggie. When sick we all tend towards comfort food because of the morphine effect except our kids will rebound with worse symptoms. I don't know where you live but with all the bad weather I would also check for mold. It also weakens the immune system allowing strep to take hold along with some molds being a neurotoxin. Hugs to you...hang in there.

flmom, Go for the 3 weeks if you can. Just like antibiotics you want a consistent level. We had improvement in OCD and compulsions/tics, along with the irritableness. My husband and I couldn't be in the same room with him....36 hours later sitting on sofa together watching tv. Later when we gave him antibiotics all OCD faded away. Wish you the same. Mamaluvsyou, I don't get the deal with Valcyclovir. I had a two year old on it and side effects are low compared to psych drugs. I begged for it in the ER and the Dr refused but then again he wouldn't even do blood work. We had three infections!

My heart feels for your son and you too. How frustrating. I vaguely remember reading that the author (?) Stephen King had burning sensitive skin due to a reaction to beef after contracting Lyme. I would try an elimination diet and filtered water.

Interesting there are 2 encephalitis vaccines.