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  1. Like
    3bmom got a reaction from JuliaFaith in Could this he the culprit for PANDAS?   
    I know but it will be a lot cheaper than medical bills and I think our change in diet is what has stabilized him. He had life threatenening allergies and we had no idea! changed diet based on allergies and got 30% improvement. Learned about GMO's and altered diet and his numbers are near normal in 6 weeks. His immunologist didnt even know about GMO's. He tells every patient now.
    I think healing comes with addressing detox pathways which Glyphospates disrupts. That's why I came to this forum. From what I have read it looks like a three prong approach, infections, diet, methylation.
  2. Like
    3bmom got a reaction from JuliaFaith in Could this he the culprit for PANDAS?   
    Round-up pesticide is patented as an Antibiotic. It came about as a derivative of Agent Orange and its use on crops began in the late 70's. It was sprayed on the weeds to kill them by hoarding essential minerals so the weed would die. At that time the FDA said small amounts would be deemed safe based on the chemical companies own research
    . We also added systemic pesticides at that time ( can't wash off) to kill bugs which are both endocrine disrupters and neurotoxins.
    GM0 food was engineered so you can now spray the entire plant with round up to get the weeds but the plant won't die. The reason the plant doesn't die is they found bacteria/ virus that was resistant to Round Up (antibiotic) and genetically put that in our food. Our bodies have NEVER seen this before.
    Corn 90% of US grown has been altered so every cell manufactures pesticide and kills bugs. They are finding this pesticide in babies placenta.
    Animals are also fed Antibiotics because it makes them fat quickly. 80% of antibiotics consumed in the US is from our food supply.
    If this doesn't make you crazy the FDA just approved in spring very large amounts of pesticide to be sprayed on crops because GMO plants created super weeds. None of this has safety testing for us.
    Countries around the world are now banning the growing of GMO food and labeling food brought in from the US. Last month Mexico I announced they will no longer grow GM corn effective immediately.
    Unfortunately the US is speeding up approval with genetically altered apples and genetically altered Salmon ( grow double its size) with out human testing.
    This all will cause inflammation. When the straw breaks the camels back is dependent on your DNA and detoxification pathways. This could be a vaccination (designed to turn your inmmune system on), Tylenol ( can't clear it), infection etc.
    I didn't mean to write a book but this is so serious. I met a man from England last week and he said they have known this for 10 years!
    I also spoke with a farmer from here who presented info to the FDA. He says pigs fed GMO food have intestines that fall apart in your hands and can no longer be used for sausage casings. Anyone else thinking leaky gut?
    Here is a clip from a MIT researcher.
    Please look at your food carefully. Go organic and stay away from processed food.
  3. Like
    3bmom got a reaction from rowingmom in Ped won't test for strep   
    Every time, usually my brother, one of us 4 kids got strep we all had to get a shot of penicillin. This was in the 60's, yikes showing my age. I don't know if this was standard protocol along with removal of tonsils being the norm but strep was always taken seriously.
    Maybe these changes are part of the problem.
    That being said change I would change pediatricians. First of all a negative culture DOES NOT mean you don't have strep. A lot of our kids can be asymptomatic due to a dysfunctional immune system. Strep can hide behind tonsils, in the sinuses, vagina etc. You might miss a diagnose due to their ignorance and never get a clear picture.
    I just had my non PANDAS college age son's blood work done because he look tired and very pale, a clue for me. I saw him at Thanksgiving and he had been sick but felt better. His girlfriend got sick from him but had strep and was put on antibiotics. I thought Hmmmm. I need to be sure before he comes home and is near my DS.
    Throat culture, sinus culture negative, ASO 770. He is starting antibiotics immediately before he comes home for Christmas.
    Today my PANDAS DS will go for to double check because they were together at Thanksgiving. I had just said to my husband my DS is looking tired, dark circles and pale plus a little grumpy, fighting curfew and has become disorganized despite trying. Clues for us the immune system is revved up. He is on prophylactic abx but also just got his wisdom teeth out before thanksgiving which they informed me is a heavy bacterial load. I don't take chances.
    We need definitive answers or we become a dog chasing its tail. Your pediatrician won't be able to help and its exhausting trying to educate.
    In the beginning I did use walk in clinics for siblings cultures. I just told him we have rheumatic fever in the home and need to check. PANDAS is rheumatic fever of the brain...wish we didn't give it a cute name, so you won't be lying. In our case the only positive culture was his first exacerbation.
    On a side note the National Pediatrics Association in November in Florida unanimously voted to accept PANDAS/PANS. When or how this becomes mainstream IDK. Good Luck.
  4. Like
    3bmom got a reaction from MissionMama in Would anybody be interested in starting collective Prayer?   
    I do too! I also found help with a gratitude journal... Even if I was just grateful for the end of the day. 3bmom plus 3 boys.
  5. Like
    3bmom got a reaction from searching_for_help in EATING DISORDERS?   
    My sons last flare at 11 he lost 35lbs in 2 months. He wouldn't eat growing food ( my expression )because he was becoming to tall.
    It is a vicious cycle because the food they are eating is probably causing inflammation hence Obssesiveness . This food also has a morphine addiction because of the cytokines in the immune response.
    The Dr that saved his life, (hospital gave parenting lessons) will not treat PANDAS if you don't do diet. He finds it an uphill battle and difficult to remove inflammation on the brain. For us it was between a rock and a hard place. I didn't want him to lose anymore weight.
    First we removed dairy because it is implicated in type 1 diabetes and my DS was already in an autoimmune state. The Dr was strong about this. I was able to scare my son into folllowing and did choc shakes with almond milk. Then we removed wheat except for 2 pieces of white bread a day for a Sandwich. Whole wheat is more inflammatory. The first month we saw almost a 30% improvement in behavior except he was working out 3 hours a day.
    Than he added prescriptions. HHV 6 with valcyclovir, a zpack followed by prophylactic erythmycin . The gym faded away. From all my years of observing my child I believe the medicine worked more effectively because of the diet and we have been able to stabilize.
    My son has expressed interest in going vegan especially with all he has read on GMO fed meat. My concern is he cant eat grains because of inflammation. I had him read the fun version of the Paleo diet and his older brother at school is on it. We follow about 90%, still have our Friday night root beer floats but with organic root beer and organic soy ice cream. We eat the same and he gained 30 lbs of muscle and I lost 20 lbs. The body begins to come in balance.
    Would love to test all anorexics for infections and see what clues.
    Hope this helps. Remember ANY little change takes a layer off the brain.
  6. Like
    3bmom reacted to JuliaFaith in Another Great Article for lyme treatment   
    Not sure how long it will be available. I am printing it out for future reference. The "References" at the end are also very interesting. Thought it might start a provoking discussion with you experts out there. It provides a 'checklist' if you will, of steps that this doctor takes for treatment of lyme and other chronic health issues.
    Have never heard of the 'KMT 22 TENS' unit that he talks about. Following is one item mentioned that may be of interest to those of you with strep issues.
    "C. Next we attend to the chronic strep infections, which often coexist with the herpes viruses. No other treatment has been as successful as Pleo Not (penicillum notatum) from Pleomorphic-Sanum followed by a 6 month course of Pleo Sancom (antidotes for aspergillus niger and mucor racemosus)."
  7. Like
    3bmom got a reaction from searching_for_help in Help figuring out blood work   
    HHV-6 is as important as strep. Did he run those? What about EBV etc.. Viruses are as important as Strep! That is why the definition has been changed to PANS. I am sorry but my frustration is showing. Maybe yours were negative but I notice some get focused only on strep titers and I worry parents will miss an opportunity for healing.
    After my DS first flare with strep his immune system became dysfunctional and ANYTHING including a sick sibling, classmate, parent, babysitter, (have even heard about pets) will activate the immune system. The activation causes inflammation in the brain.
    Our white blood cells were not low but we found he had life threatening allergies with no physical symptoms. I think everyone's immune system reacts differently as it fights to regain balance.
  8. Like
    3bmom got a reaction from Pilbara in Working in the Dark   
    I am so sorry for what you are going thru. We all know what it is like to have your child's brain kidnapped. Would your son read "Saving Sammy", watch the episode of "Mystery Diagnose", or clips of Beth's interviews? She has a new book out which is a guide for parents that may help you.
    Unfortunately your pediatrician doesn't have a grasp on our kids. A lot of them are asymptomatic due to the dysfunction of the immune system. I would find a Dr. who is well educated in this area.
    Our son too spun out of control with his last flare and wouldn't go to a Dr. etc. We used a teenage transport service to get him to the hospital safely only to have them put him on a psych ward where nothing was done and he was released to us with parenting lessons. Needless to say he wasn't a happy camper.
    Our Dr. immediately put him on a diet that eliminated Dairy, Wheat and ALL Grains since corn is genetically modified and our immune system doesn't recognize it along with soy unless organic. Again it is genetically modified, GMO. Dairy has been shown to cross the brain barrier. If you google it you can read scientific studies from major universities. Any little bit will help with inflammation. It takes over a week for allergens to clear the body.
    It took 5 of us to get the blood work but I think him seeing in black and white that he had 3 infections along with life threatening allergies (no symptoms), opened a crack in the door for him to realized he wasn't crazy just very sick. Antivirals and antibiotics gave him back to us.
    Hang in there. You are not alone. Hugs! 3bmom
  9. Like
    3bmom got a reaction from SSS in GMOs and Glyphosphate disable detoxification pathways   
    Those who want to change diet be kind to yourself. It is a process and takes time. We substituted organic soy and almond milk, (we don't have allergies to those) 1/2 and 1/2 in original milk carton. We did this so DS taste buds transitioned. We slowly changed bit by bit. He loved fruit but never ate anything green. Two years later he eats salad and last night he said my roasted asparagus was amazing! Wonders never cease.
  10. Like
    3bmom got a reaction from rowingmom in Genetic Roulette   
  11. Like
    3bmom reacted to JuliaFaith in Question about double ear infections   
    My son was having similar issues. His doctor suggested that we put a drop of hydrogen peroxide in each ear after a bath. This really helps. I know because I do it too.
    We have also had really good success with "Manuka Honey". I know it sounds funny but it works in the ears, nose, and throat. We make a 4 oz. jar of distilled water and add about a tsp. of the honey for ears and nose. I also add 1/2 tsp. to cooled tea (don't want to fry all that good stuff in it) during colds and coughs. Have a note to buy 35+ next time. There are different numbers on the jars. Our 8.75 oz. jar was about $35 but is lasting a long time and we use it frequently. It seems like the www.goodhealthguy.com is where I first learned about it.
  12. Like
    3bmom got a reaction from tj21 in IVIG - really worth it?   
    Almost 90% of corn grown in the US and soy is genetically modified. The corn has the DNA of a bacteria put in every cell so when the bug bites into a corn kernel it's stomach will explode. Makes you wonder what does it do to our gut? They are finding this toxin in a majority of placentas showing it doesn't disappear. It also exposes us to more toxins than has been tested along with high levels of formaldehyde. Pigs fed this corn are irritable according to farmers. I posted a link under GMO's and also "genetic roulette".
    When we gave up corn and did Paleo diet like S and S our allergy titers plummeted. our Dr now tells everyone to do this. My DS gained back his 30lbs in all muscle and sleeps well too. Sometimes I would think we were having a flare only to find out he ate something he shouldn't have and it takes a week at least to clear.
  13. Like
    3bmom got a reaction from JuliaFaith in GMOs and Glyphosphate disable detoxification pathways   
    Organic flour should not have glyphosphate sprayed on it. Conventional grains and legumes are sprayed during drying. Wheat flour was changed in the 80's when the grain was bred to be a shorter heartier stalk. The by product is a grain with a substantial increase in gluten proteins. This may explain why people can eat pasta in Europe but have health issues here in the US.
  14. Like
    3bmom got a reaction from JuliaFaith in GMOs and Glyphosphate disable detoxification pathways   
    My DS showed no allergies to corn. His allergies during his last flare were at life threatening levels and we had no idea! We eliminated everything on the list and had a slight improvement. I noticed he craved corn so I wondered if there was a "morphine like" effect from the immune response. We eliminated all corn except organic and we pop corn the old fashion way. His allergy numbers fell dramatically in 6 weeks and we are near normal levels! A Canadian study found the pesticide in BT corn is found in 93% of placentas from pregnant woman. Mexico announced last month that they are stopping the growing of all GM corn effective immediately. This corn is over 85% of US crops and is found in most "Gluten Free" products and soda.
    Analysis Identifies Shocking Problems with Monsanto’s Genetically Engineered Corn
  15. Like
    3bmom got a reaction from JuliaFaith in Question about double ear infections   
    Dairy will compound ear infections because it creates mucous not to mention highly inflammatory.
  16. Like
    3bmom got a reaction from JuliaFaith in GMOs and Glyphosphate disable detoxification pathways   
    Thanks Rowing Mom. The recording of the interview was free for today. Thanks for the link on the paper. I need to absorb all this important info.
    They also talk about the pathways disruption with Dopamine and issues with a buildup of ammonia and formaldehyde in the body not to mention all the disruption in the gut creating issues of encephalitis.
    I knew GMO's are bad but the info points to me a major piece of the puzzle. Glyphosphates began in the late 70's and with the addition of Round Up ready crops in late 90's Autism and Neuro issues have soared. I find it interesting that Swedo started her research on PANDAS in 1998!
    The FDA approved a 30 fold increase in human exposure to Glyphosphate last March to combat resistant weeds. Go Organic!
  17. Like
    3bmom got a reaction from rowingmom in GMOs and Glyphosphate disable detoxification pathways   
    pr40 I have a question. When you do gluten free are you eating gluten free products from the grocery store? Our sons Dr didn't know why but with some kids the numbers didn't change or improvement in behaviors. He now knows most gluten free products are Round Up ready GMO's in corn (87% of US grown corn) and soy (90% of US). Also conventional grains and legumes are sprayed with glyphosphate when drying. Our Dr also discovered allergies to rice. Organic and conventional has high levels of arsenic. I think if our kids detox pathways weren't so overloaded with allergens, yeast, mold, infections, parasites and pesticides they could tolerate a little. Goes back to all of our different tapestries.
    I look for every new dot as a new layer to remove to help the body heal. From everyones posts I also need to learn what to put back in to continue healing.
  18. Like
    3bmom got a reaction from MissionMama in PANS/PANDA with negative ASO titer? So desperate!   
    My heart reaches out to you. It is like someone has kidnapped your child's brain. I am fairly new to this forum but I think there are threads talking about what tests. We had low ASO but slightly elevated antiDNase B. our biggest surprise was HHV-6, 15x normal and elevated Myco. Everyone tends to have a different tapestry. We had brought our son to a Dr in Redmond ( I am originally from Seattle) I think her name is Kellar. Three days before the appt. behavior got worse and we went to ER at children's in Seattle. They refused blood work even with all my medical documentation. Glad to see there is some change. I don't know if Kellar is open to new patients. Dr Thienimann is recognized in the PANDAS community along with Dr. K who I believe does the IVIG. Dr T will do phone consults but I hear he is hard to get a hold of.
    Will your pediatrician prescribe antibiotics? Antivirals? We see an immunologist/ NIDS (Neuro Immune Dysfunction) in LA, Dr. Michael Goldberg. The first thing he will do is diet. He now recommend Paleo/caveman diet. You can start that. Removing Dairy helped with mood and obssesions. Our son had hidden life threatening allergies and now his IGg is normal. It's all about removing layers taxing the immune system which you will learn here. You will get him back and you have support here. Hugs, 3bmom
  19. Like
    3bmom got a reaction from cobbiemommy in Alzheimers/PANS Linked?   
    LOL advanced member. My DS Dr says it is all related. A neuro immune response creating inflammation in the brain. Last year at 89 my father-in-law started having Alzheimer's symptoms with OCD. The big university hospital said it was depression and spent 6 months addressing his change in mood. I asked his old fashion primary to run blood work. Sure enough he matched my DS! The highest titer was HHV-6. We did valcyclovir but slowly. We saw confusion at first and than clarity. Maybe it was hard detoxing. Than we got him mentally back to find out he had cancer. Wonder what would of happen if infection was addressed sooner.
    Veterinarians first look at infections if pets behavior changes... Why not children?
  20. Like
    3bmom got a reaction from rowingmom in GMO Genetically Modified Food   
    Our food supply has been genetically altered with viruses, bacteria and pesticide DNA. 64 countries around the world label this food. We don't and it is in 80% of processed food, our corn, soy, sugar beets and canola oil. I highly recommend you watch the movie "Genetic Roulette". You can buy it on Amazon. It is being offered for free for two days on Dr. Mercola's website. I truly believe this is the start of our childrens issues and the answer to heal our kids.
  21. Like
    3bmom got a reaction from rowingmom in Alzheimers/PANS Linked?   
    LOL advanced member. My DS Dr says it is all related. A neuro immune response creating inflammation in the brain. Last year at 89 my father-in-law started having Alzheimer's symptoms with OCD. The big university hospital said it was depression and spent 6 months addressing his change in mood. I asked his old fashion primary to run blood work. Sure enough he matched my DS! The highest titer was HHV-6. We did valcyclovir but slowly. We saw confusion at first and than clarity. Maybe it was hard detoxing. Than we got him mentally back to find out he had cancer. Wonder what would of happen if infection was addressed sooner.
    Veterinarians first look at infections if pets behavior changes... Why not children?
  22. Like
    3bmom got a reaction from croatianmum in pandas can be cured only if it's treated early?   
    I agree with everyone. Our bodies are amazing and with removal of layers of infections, given a chance it will go towards healing. You didn't mention valcyclovir/ valtrex. Has Herpes Viruses 1,2 and 6 been checked? That was a big piece of the puzzle for us.
  23. Like
    3bmom got a reaction from JuliaFaith in Antivirals   
    We are on Valacyclovir 1 gram 3x/ day for the last 2years. Started off slowly so he could handle die off. Made a huge difference in 36 hours for us. Would of kept him out of hospital if they would of done blood work. His titers were for herpes simplex 6, 15x higher than normal. At zero now and Dr is thinking about taking him off which scares me since we have had such great success. His Dr. Also tested for Herpes 1 and 2. Just had him tested for cosakie and it was negative. Dr. has seen that whenyou treat the other issues, and allergy and GMO free diet you can kick out other viruses.
    On a side note my other son at 2 was put on valcyclovir for 5 years after getting multiple cold sores every week. He has dyslexia, Irlen, and dysgraphia. Lost dysgraphia with acutane for horrific acne. Wonder if he would of had Autism if left untreated knowing what I know now.
    Didn't see any side effects with either boys.
    Also used for father when we saw signs of Alzheimer's and he tested positive. Great results!
  24. Like
    3bmom got a reaction from otksmama in Importance of diet   
    Our Dr will not treat your child unless you follow diet since it is a major cause of inflammation. Our DS had severe OCD and lost 30 lbs and diet was before any prescriptions. His allergy antibodies were at life threatening levels and we had no idea. He has been doing immunology for 30 years and closely looks at allergy markers. Besides dairy and gluten he has found rice to inflame too. No wonder since the news last week shows high levels of arsenic in rice. We followed the diet and improved. When my son stared the Paleo/ caveman diet because of his college aged brother all allergy markers dropped to normal range. His Dr now puts all kids in his practice on this diet except for 2 slices of very white bread (less allergenic) once a day. This helps with lunch at school. The diet also eliminates GMO's which are highly prevalent in gluten free food. For info watch Robyn O'Bryan on utube or watch the video "Genetic roulette".
    Our bodies do not recognize the DNA of roundup in our food so the immune system sends out the soldiers to attack. The more soldiers the more likely to have friendly fire hence autoimmune.
    Clues to what your children are allergic too is what they crave. The immunes response to an allergen is similar to a hit of morphine giving a temporary calming effect... Hence our love for ice cream when stressed. Pizza has dairy,wheat, yeast and nitrates if you add pepperoni. No wonder its our kids favorite food.
    It is a transition to change diet and for us it took awhile. You have to forgive yourself along the way and remember every little change helps take a layer of inflammation of the immune system giving it a chance to heal. Once your child is off the food they no longer enjoy it. He will eat pizza at a bday party to fit in but now feels physically ill and won't ask for it at home. We make great smoothies in the morning and he still likes chips. I just make sure they are organic. I would say we are 85% "good" and still our antibodies dropped along with behaviors.
  25. Like
    3bmom got a reaction from logismum in New member   
    Hello, I am a new member but not new to PANDAS. I have been on this journey for 8 years with my son. He got strep when he was 6 and changed overnight. We did the ER and he was whisked off to the psych ward. After many days they diagnosed him with severe OCD and PANDAS. They even videotaped for Teaching purposes. Gave me respirodal and outpatient behavior therapy. Later in therapy the doctor came to me and asked what I had done because he showed no signs of OCD and his tic was gone. He had been on a Z pack for an ear infection. Could of saved us so much grief if given earlier. We continued to bump along with a homeopathic strep pill ( pill has been discontinued), some changes in diet and a round of antibiotics whenever a flare arose.
    5 years later we had a horrible flare and loss of 30lbs so we went back to the same ER but this time with his medical records. Wethought we would get either an antibiotic drip, steroids, or IVIG. Whisked away again to psych but now they ignored their own diagnosis and they refused to do any blood work! Released him 4 days later with us getting parenting lessons and cognitive behavior therapy if we could get him there since he would try to jump out of moving cars. That night I think he had a grand mal seizure.

    2 months later and a lot of ###### ( besides behavior he could no longer read or write and math disintegrated) we got to a neuro-immune dr. He had strep, low titers,mycoplasma pneumonia , and HSV-6 (herpes simplex virus) titers 16X higher then normal! Also his IGM/IGE allergies were at life threatening levels. The Dr addresses everything one at a time so he can see what is working. Food first. No wheat no dairy. It was very difficult but we saw some improvement. Next when we went on the antiviral Valcyclovir in 36 hours we saw remarkable improvement. He then added antibiotic along with serotonin lifter. Because he lost his organizational skills Intuniv was added. He was back on honor roll except for math.

    Most days he is a joy to be with and I remind myself to cut him some slack since he is a teenager. I have joined for multiple reasons. I would like to learn to integrate natural medicines. Are there ways to help with Math besides tutoring? I found out I test positive for Lyme from the new culture test and what do members think of that test. How are they being treated for Lyme. I also would like to help others on their journey and give them hope.

    Sorry I wrote a book. Thought it would be better for understanding where I came from and what I have done. Thanks for listening / reading. 3bmom

    PS. I also have a son with dyslexia and Irlen. When he first put on his tinted lenses and read a paragraph I was BLOWN away! I still get chills. Now he is starting his second year in college. I saw that Helen Irlen is on your board. THANK YOU FROM THE BOTTOM OF MY HEART! Every entering kindergartner should be tested.
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