3bmom

Sorry to hear. Since you were doing well and his eating is healthy, non GMO, I would check for a infection either in him, family member or good friend. I posted yesterday under anorexia. Our DS lost 35lbs in 2 months at 11. Found 3 infections and life threatening allergies. I suspect Lyme too. Is he eating grains instead of meat? They can be very high in pesticides, arsenic, and mold.

Removing Dairy for us helped significantly with rages while we waited for blood work results. We were also put on medication one at a time. An antiviral was first before abx since our DS titers for HHV was very high. 48 hours later the rages subsided. That was just our experience. In my prayers and stay safe.

I suggest copies of tests for yourself to read and any you can't figure out circle and ask the Dr. Our treating physician treats any titers over 4x normal as active infection. This is based on medical standards he was taught years ago in med school. An example is HHV 6 is human herpes virus that may be implicated in MS and Alzheimer's too for crossing the brain barrier. Our sons was 16x normal. When he was put on Valcyclovir those titers dropped to normal range but more important behaviors changed. No OCD, no sensitivity to light, sound,smell, clothing, no oppositional behavior, improved handwriting, organization etc. If you think of the immune system as a cup. Different things add liquid, environment, food, allergies, infection. Eventually without changes you get to the top and spill over and for most that is when we have an abrupt change and PANDAS/Pans. Asthma is an immune response so the cup is pretty full. What we all have learned over the years and is hard as a newbie that if you don't remove some of the liquid it might spill over again. The tricky part is we all have different but similar liquid in our cup. Some of this liquid can also be removed in different ways , herbs, supplements, abx, diet etc. that is why this forum is so great. We can bounce ideas and share successes and failures to connect the dots for a clearer picture of our child. This is a dysfunctional immune system and there isn't any one pill or easy answers but there is hope as we see others achieve recovery/ remission.

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.

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.

Don't mean to sound like a copycat but I am very similar. Normal, normal, normal but I know I am not feeling normal. Over many years 2 Igenex tests both negative. Finally after reading so much here and in Lyme books I feel like I was reading my health history. Got the Lyme culture test and was positive. A book I read said mold which we had due to poor window installation will sometimes work synergistically with Lyme to bring symptoms up. That is also when my DS got PANDAS and asthma. I also had huge weight gain even while working with a trainer and nutritionist. Always tested normal on thyroid but my new Dr said I had high anti-TSH which was canceling out my normal numbers. Unfortunately he passed away suddenly and then we moved. Started with acupuncture, trying to avoid antibiotics and I am more clear headed but Neck and shoulders are extremely tender and stiff. She said we probably are clearing the Lyme but it is going into tissues. She has recommended a naturepath to detox out heavy metals. I do non GMO and Paleo diet which has helped. Curious for both you and me

I found this really interesting! I personally have had problems with hypoglycemia. My husband will feed me when I am super busy because he knows I will become grumpy. I see this a lot in my DS especially before a growth spurt. I can't seem to feed him enough. In one of the many articles I have just started reading on Lyme this was also mentioned as a factor. I and my older son just tested positive for Lyme. My PANDAS DS hasn't been tested because of prophylactic antibiotics but I am sure he is positive as well.

I just read your journey and am glad you found this forum. I wish I had 8 years ago. Because I was my child's Dr, little help from pediatrician I have observed and educated myself a lot and still have lots to learn. It is a big puzzle! Some seem to get focused on strep alone. I believe it is brain inflammation caused by an over active immune system due to infections, changes in our food, and gut issues. While our body is busy with all this it will store heavy metals since infection and potential invaders are a priority threat. This might of been mentioned but I saw inflammatory clues before the mist. I feel the mist like other vaccines turns on the immune system which it is designed to do. I visualize it as send out more troops. Since there are so many troops out already the immune system ends up with problems of friendly fire... Auto immune attacking itself. Because of some similarities with my DS asthma is a clue. Did he ever have eczema they sometimes go hand in hand. Dairy is a cause of inflammation and removing this will significantly help with asthma and PANDAS. Also mold at home or school. The neuro toxins released cause inflammation. I know a family whose kids have strep 48 hours after rain. My husband thought I was crazy until it rained and I called to chat and see how all the kids were doing... Home with strep, again! The sensory issues are inflammation too. We had them in our non PANDAS older son who out grew them. Why cant they make seamless socks! He now at 20 has chronic fatigue and concentration issues. Dr T at a conference said that is unchecked PANDAS/PANS. He tested positive for Lyme and RMSF. Coxsackie is found to contribute to these issues too. The inflammation will bring this back up too. Did they test for this? Also because of the over active immune system symptoms get buried and the kids present asymptomatic even though they are sick. I am so glad the OCD is gone but I would consider looking at the other inflammatory clues so he won't get knocked out again. Its like peeling an onion one layer at a time. Also educate yourself about Genetically modified food. The US diet is heavy in food our body doesn't recognize so the immune system never gets to rest. Our Dr won't treat unless you do diet and he has a 6 month wait list. Just some thoughts.

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.

Have you tried the ibuprofen? We had prescription amount for wisdom teeth and all his irritability went away. It was only for a week so I know something is bugging him. Diet, sick kids, hormones etc. Won't steroids create more yeast? What about grapefruit seed extract? I also like Vitamin C for support. It is great he recognizes something is off. That is half the battle. He may also have hormones with a growth spurt coming and it is being exacerbated by the pipsqueak. I will put you in my prayers.

At our hospital I found out there are Dr's that believe there. (Found out at a party, small world), but their hands are tied. I want to know how, why??? Be great for an investigative journalist. What hospitals, how many. It appears from posts and other parents I have met that private school affiliated hospitals may be more on board. Anyone with thoughts on this or experience?

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.

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. http://m.youtube.com/watch?v=h_AHLDXF5aw&desktop_uri=%2Fwatch%3Fv%3Dh_AHLDXF5aw

Glad you were able to make the connection. We found flying did it. The immune system does its job by revving up and unfortunately for our kids the brain gets "friendly fire". What conference?

By accident we found out the irritability and confusion was leftover inflammation. We attributed it to being a moody teenager since he has been stable for 2 years from OCD and tics. Gave him prescription ibuprofen for wisdom teeth and saw for the first time our easy going, laughing 6 year old. Did you check other infections besides strep? Diet?

Sorry you are going thru so much. I second msimon3 about getting blood work done. Don't forget to check yourself too. the stress you are under can tax the immune system and hide infections. You will then ping pong off of each other. Have you tried ibuprofen? Sometimes that is a clue for inflammation of the brain. Any mold issues? I posted a link a few days ago. School have leaky roofs? Is your diet GMO free? Gluten free products that don't use organic corn probably have the BT pesticide toxin in it. This is about 90% of US corn. This is pesticide DNA in every cell. Our immune system won't recognize this as corn and will keep attacking creating inflammation. We also found dairy made a huge difference. In March the FDA raised allowable limits of pesticide use w/ out testing. Children and the elderly are the most vulnerable. Go organic as much as you can. Has she had a gynological exam? A good friend of mine 7 year old had a cyst on her ovary. Pain in the abdomen. This shows similar symptoms to tics and Pandas with another auto immune disorder called anti-NMDA receptor encephalitis. Try to find time for what I call " floor time". Just sit with undivided attention and play with her, read, color, play doh, whatever. You might find it will help with your stress too. Doesn't have to be long, you just need to be present. Hugs to you for holding everyone together. Hang in there.

I know you said herpes virus. Make sure they include HHV-6. This was huge for us and has possible implications as a stealth virus in MS and Alzheimer's. Good luck!

I think you are right not to pin him to anything. It is just another version of OCD. I use to have a huge OCD reference book for guidance since his was a moving target but one day I realized every medical and nutrition book had "disappeared. I also found OCD that was constantly shifting was more do to exposure ( immune system turned on) such as when we flew, sick sibling or friend and severe OCD an infection. We are on sertraline for increase blood flow to frontal lobes. Our Dr uses a spect scan to show healing. He said it is a different classification than a psychotic and only prescribes after infection and diet is addressed. This was about 4 months into treatment. We have been stable for two years and now only see slight irritability for 24 hours due to a pizza or something at a friends house.

I wish the hospital would of dove ANY testing! Prove me wrong. What scares me is the first time they didn't understand but were willing to look for strep (only infection tested) and they brought everyone together including a world renown OCD specialist. I authorized a video tape for learning etc. They didn't have the answers but there was an attempt. The second time nothing. A child with hospital records from their own facility which they ignored. 11 yr old with 2 month 30 lb weight loss. Matted hair like a homeless person. I even asked about a shower and eating. They didn't even know. Basically no observations for 4 days. They believed it was all us. We did parenting lessons because we were afraid of what might happen if we didn't. We are by no means perfect parents but the teacher took notes from us! A year later another family went and their son almost died why they ignored his bladder infection among other things since they again refused blood work. Maybe arrogance but in some hospitals the "climate" is different. LLM is right, even though very stressed, stay calm, stay focused and choose your words carefully.

Comes to close to home for us. First hospital stay at 6 took him to psych and we could only visit 1 1/2 hours a day. 10 days later we left with outpatient OCD services and respirodal. 4 months of therapy little change and than we go in and all his germ issues have vanished and the Dr wants to know what I did last week. Nothing but he did have antibiotics for a raving ear infection. Fast forward 5 years at same hospital, thru him in psych, refused blood work or even a swab, refused immunologist from their own hospital requests and said ALL Drs including Director would be available during parent meeting. Only resident Dr and social worker were present. I brought up his records and antibiotics. Nothing! We got parenting lessons and outpatient services (because of Beth). It turned out he had 3 infections (one being strep) and life threatening allergies....all shown with evidence based blood work. What I can't figure out is Why? Just because the symptoms are new, or they don't understand it we will blame parents? Or mass hysteria like the Leroy, NY girls? I personally feel we have seriously changed the face of food and therefore seriously changed the face of medicine. PANDAS, Autism, Lyme, Mito....all are controversial. All have gut issues. All have exploded since the 90's. Why are hospitals ignoring these clues? Why are hospitals ignoring respected Dr's? Why are hospitals ignoring parents?

I forgot to add, probably because I want to forget but this lasted 6 weeks and during that time he stopped talking because it would throw him into tics. Never knew what set it off because they didn't test right and then our Dr let us go because we were "beyond their scope".

We had something similar where my DS was afraid he would lie and also couldn't rationally discern between the two. It would then create stress and what I thought were tics but turned out to be compulsions. Painful to see them suffer. We ended up with CBT and had improvement in a couple of sessions. This one I think is better with the experts. Are all infections addressed? Everyone checked in the family? A Dr. Last week even had me do a vaginal swab for strep! First time asked. How is his diet? Every layer will help. My heart is with you.

I would like to know how they treat it too. Our whole nightmare started from mold. Didn't put it together till a year after first pandas episode. Now realized they were linked because at the same time the tubes in his ears collapsed (and he was 5) and we had Asthma too. That's gone fortunately. Mold is as controversial as Pandas and Lyme. Guess our family likes to be out of the box!

That's great and it makes sense to me. PANDAS, Autism, ADHD is shown to be a combination of infection and Autoimmune. The immune system is dysfunctional and has sent soldiers to attack anything it sees as threatening both good and bad. I see antibiotics killing off bad bacteria and maybe bad gut flora. Anti-virals killing off viruses. This eliminates infection inflammation, just like a cold makes us fuzzy brained. Then diet eliminates another layer of inflammation. Remember we have changed our food with pesticides and GMO. We have eaten the same for over 10,000 years and can't expect our immune system to recognize foreign food in 30 years. Over 64 countries ban or label what we eat every day. It's got to make you wonder why? Theses aren't hyper moms we are talking about countries around the world. Rowingmom correct me if I am wrong but didn't you use supplementation based on your daughters genetic profile? This is the puzzle piece I am so interested in. Our Dr won't allow supplements. Before you condemn him hear me out. If you have an immune system that is strong but confused and you supplement it what may happen is you give it strength to attack better. If you address the layers of inflammation and than supplement based on individual needs you can than stabilize the immune system to function as it was designed and hence lower ANA. When we have infections, threats like foreign food our bodies will make that a top priority. The immune system is on a constant treadmill trying to survive. Think how poor our decision making process is when we are exhausted! Meanwhile heavy metals are brushed under the rug (hidden) to be dealt with at a later date. That is why methylation is an important piece of healing and why I have come to this forum. Thank you Rowingmom for giving me inspiration to move from stable to healed.

Have you tried diet? The Glyphospates in Round Up pesticide is patented as an antibiotic and genetically altered (GMO) food in our diets is causing severe inflammation because it is foreign to our immune system. I have a post or you can google it. Over 64 countries either ban or label food products from us. Shipments to Japan and China of wheat and corn that have been genetically altered have been refused. I highly recommend the movie "Genetic Roulette".