3bmom

I send out hugs to you. I truly don't understand what is happening to this generation of children. I am a bit older and one of 4, husband 1 of 6 and grew up in neighborhoods with even larger families. Children like ares' would not of been "overlooked". Sorry very frustrated to see another family in pain. We have had a similar journey but have not done IVIG. Hospital gave us parenting lessons instead. We did find a Dr and our son is doing great. Sick over the weekend so on alert, so far so good. From what I have heard you are with a fantastic Dr. Did he have any viral, mycoplasma or Lyme? What about diet and allergies? Our allergies were life threatening and we had no idea. We do Paleo/ caveman which a parent posted a great link under nutrition. Just eliminating dairy will bring down the rage and violence. There are rat studies showing this when I did research. Grain also effects this since it has been genetically altered in the 80's. creating inflammatory proteins in the brain. A neurologist has written a book called "Grain Brain". The next thing is we went organic with no GMO. His allergies then dropped to normal in 6 weeks. Some here have had success without diet, our Dr will not take you as a patient. He has done immunology for 30 years. We addressed diet, next virals, strep kicked out easily then, and still have low mycoplasma. Mycoplasma is starting to drop as I address mycoplasma in me. We also are on prophylactic abx, virals. He takes an SSRI which is why I came to this website. He was not put on it until he was stable. Our Dr uses it to keep enough serotonin around for tryptophan to have kids back into normal sleep patterns. My son no longer is pale despite skating outdoors, dark circles are gone and he wakes up easily excited for school again. Hang in there. Try to find 20 min for yourself. Hard but essential considering the stress of being on high alert. Please consider the dairy. 3bmom

Please let me know what the neurologists says in regards to the Advil decongestant. That sounds interesting. Wonder if it effects any fungal issues which hide in sinuses or just calms inflammation. Did any of you read "Brain on Fire"? They discuss autoimmune encephalitis caused by cysts on the ovaries. Wonder if that connects with progesterone. Progesterone is suppose to be a calming hormone. Has anyone done hormonal panels on their PANDAS kids?

I would include looking for mycoplasma pneumonia, especially since there is a cough. We were positive without symptoms. Also checking for viral infections Herpes Virus 1,2 and 6. There are a lot more tests as you will learn from reading on this website. I would think about the risk of untreated strep or another infection for at least a week before you see the Dr. over a round of antibiotics unless they are allergic. The tics and behaviors are due to inflammation on the brain. A lot of kids here test negative on the throat culture and need to have blood drawn to see the rise in antibody titers for confirmation. I would make sure they do both the ASO and AntiDNase B. Once I was told he didnt have strep only to find out 4months later that they didn't do both tests. One was normal and the other very high. We are now on Intuniv for focus which had never been an issue before the untreated flare. Just my thoughts...

Welcome! I can only speak from my experience but I went 4 years without a Dr "in charge" of my son even though at the time a highly respected hospital diagnosed him with probable PANDAS and gave us antipsychotics. At the time my DS was just 6. I did diet and antibiotics. Read thru the forum there is a wealth of info and more Drs available who have experience. Until I got an experienced immunologist I located my original pediatrician who knew I wasn't crazy. His feeling at the time was the body is very complex and if I try something that I know won't harm such as an antibiotic and it works why should I make the child suffer until studies figure it out. It worked. My son was asymptomatic and never had a sore throat. Only with the first flare did the culture come back positive. We always had to do blood work and both ASO and antiDNase B. because sometimes one was elevated high and the other not. You will learn there can be other infections and carriers in your home. As you turn over these stones hopefully you will stop it in its tracks. Most Drs have been chastised about antibiotics and creating superbugs. I was personally yelled at by a nurse in an urgent care in front of a room full of people, and friends make comments because we are on prophylactic antibiotics. I did some research. 80% of our consumption of antibiotics is from our food. Round up pesticide is patented as an antibiotic and the FDA just raised our limits of exposure because of super weeds. I suggest organic', no dairy, no grain diet. Sounds overwhelming but take it a step at time. Find a PANDAS literate Dr. They may be an immunologist, infectious disease, neurologist, pediatrician or ... People on this website are very experienced and our kids all have a different medical tapestry creating PANDAS but they all have caring parents like you who want to get their child back and also help others not go thru what they have. Hang in there. You are at the right place. 3bmom

We have not done IVIG so I was reading experiences. For those of you which repeated strep have all people in your child's life been tested as carriers including pets?

We have had this too. One flare we only did exposure therapy since I couldn't find a Dr. to do the right blood work and it helped a lot but was difficult. The next flare we had a 30lb weight loss with aversions. His new Dr scared him about his life threatening allergies so he initially was OCD about his Paleo diet which was a good thing but stressful. A month later we added a combo of antiviral and antibiotic. They did the trick in a couple of days and he lost all obsessions. He gained back all his weight in muscle. We still stick with the diet but are more relaxed and forgiving with slip ups.

High Fructose Corn Syrup contains a neurotoxin and endocrine disrupters from the pesticide Imidacloprid. The same pesticide disrupting bee colonies thru confusion. It is banned in some European countries. In addition corn has been genetically altered GMO to contain the genes of soil bacterium that produces insecticidal toxins. Basically these toxins are designed to kill bugs by blowing up their stomach. Our stomachs as most of you know is responsible for immune function along with over 80% of our serotonin. Makes you wonder why so many people need Zoloft. It also is a precursor for tryptophan so you can achieve restful sleep. We cut out corn even though he tested non allergic and have seen great improvement. This was difficult because we used corn tortillas a lot. Maybe this can help. Remember it takes awhile to change. He ate his first full salad last week....2 years in the making!

I am still putting my hope on puberty since we are addressing the health of his immune system. My DS is 14. Yesterday at football two moms said their boys had strep and of course they "can't" miss practice. So far so good. He is on a low dose of Ery. And still stable. . He use to react to anyone in the vicinity that was sick. Rowing Mom, I started to treat my older son but the Dr gave him so many meds he said forget it. Since then that Dr (also my Dr) suddenly passed away. My older son did Paleo/ caveman diet with huge improvement! says he notices a difference if he goes off. This is great for yeast too which he had. He is on a low dose serotonin from his original Dr. Gave him acupuncture and Macca which is a hormone regulating herb. I think a root from Peru. I haven't given that to my younger son because of puberty and I don't know enough. He finally started on Valcyclovir and I think he feels better and has now asked if his younger brothers Dr. will see him. Working on getting appt. since he usually only does pediatrics. A lot more difficult when they live on their own. Wish we had a one stop shop Dr. Who knew everything. Would love to give up being the Captain of this ship!

I think with what we all have gone thru it is hard not to watch them like a hawk. I have heard that the immune system matures in puberty so if all the stressors are addressed,food, bacterial and viral infections, environment, etc. the body stops it's overreacting with excessive inflammation and may reboot itself. Look at Saving Sammy. I think before we had so many environmental factors this was true and that is why uninformed Dr.'s say, "they will grow out of it". My oldest DS ( not Pandas kid) was a great student and amazing athlete. In college he became ADD, overwhelmed, and constant anxiety causing extreme exhaustion. His Dr said he was depressed, Dr. T at last years PANDAS conference said his Chronic Fatigue is PANDAS left untreated. He had HSV-6. His titers were 16x normal and low titers for Rocky Mtn Spotted Fever and positive on Lyme culture. Also low testosterone for a 19 year old! He is doing so much better. Maybe it goes into remission or maybe we all are like this with certain things dormant only to show up based on our family tapestries when the immune system is overloaded. We are so much ahead of the game though because we know blood work is important, nutrition paramount and exposure therapy is available to break any emotional bonds. Enjoy the time, try to live in the present and know you have tools/Drs tucked away.

Lots of great info.! My son also suffered from tics and aversions to certain foods based on his thoughts. We went for 2 months where every time he went to speak he had tics. He didn't speak for 2 months. Found out thru therapy the majority of tics are really compulsions linked with thought patterns. Hard to know when they are young. I also camed to realise it is important to watch out for "listening ears". With all the research, Drs, and conversations around why they are ill it is only natural for them to overhear us and fear strep germs, food, poisons etc. We too did diet. Our Dr. Included rice because so many kids in his practice were reacting. This included most gluten free products like waffles etc. Our allergy numbers were life threatening and improved with eliminations about 30%. Then we eliminated as best we could GMO foods. He is at normal numbers ;D GMO foods have been genetically altered to not die when sprayed with the weed killer Round Up. Round Up is patented as an antibiotic and the FDA just upped the legal amount allowed to be sprayed. First of all the pesticide can change the flora of our gut. Second This DNA is not recognized by our bodies causing an inflammatory response. As you eliminate the stressers to the immune system, layers from food, bacterial, viral infections hopefully you will see less and less tics. Hang in there! We see the light at the end of the tunnel and with soon you will too.

I am slowly going thru all the old posts. We moved and changed pharmacies and yesterday they gave us Valacyclovir from Ranbaxy labs which you guys posted with fraudulent background. Thanks for the info!

THANK YOU! We moved and have a new pharmacy. They gave us the ranbaxy valcyclovir. We were returning it because it has blue pills (dye), now I have even more info!

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!

Interesting article but how come there is a larger majority of boys with Pandas and Autism? Has anyone done extensive hormonal panels? Testosterone issues?

Wow! I find this fascinating. So much to learn. We haven't done the testing but now I am reconsidering. Your explanation does help me understand why my DS Dr. Won't do supplements since what helps one can harm another. Does the test look at markers for Parkinson's ? Dr. T said a general genome panel showed most of his patients had Parkinson's markers over MTHFR. (Sp).

I too am highly concerned about the neurotoxin overload. Besides corn being genetically modified they use a systemic pesticide called Imidacloprid. It is a neurotoxin and is a chemical that acts on the central nervous system. It belongs to the neonicotnoids and works thru the stomach. It is also an endocrine disrupter.This pesticide is made by Bayer in Germany but banned for use in Germany. Think about all the "big gulps" consumed. Corn and HFCS is in everything. My DS tested non allergic for corn but craved it. When I switched to organic corn craving went away. Also last November our city sprayed back yard fruit trees with this chemical. I wouldn't let them touch ours since our backyard oranges are the only ones that don't make my DS lips swell. Coincidence? This is also the chemical that causes confusion in bees and may be responsible for collapsing bee hives. I have also spoken with a brain researcher who says they are studying the possibility that HFCS crosses the brain barrier different from sugar. Psychology Today, last September had a great article explaining the pathways this toxin effects. I too have pulled out grandma's recipes. Most European and Mexico countries do not allow HFCS in any soda. Hmmmm

I don't know anything about gut cleaning except change in diet. Do you take clay or do you soak in a bath? A friend with cancer detoxed by rotating her baths with minerals and clay.

Has anyone seen Dr. Stephanie Seneff from MIT post on how Round up in GMO food disrupts the methylation process thru gut symbiosis and chelation of important minerals. I know we have had improvement thru avoidance but would like this forums knowledgable and experienced thoughts. I have been slowly reading your posts to gather info. I found the one on copper inbalance allowing cadndida and other infections to be highly interesting. This seems to go hand in hand with the above post on magnesium. Does anyone know a good Dr.who looks at these imbalances or have had success?

Thanks for posting the info on copper! I also found it very interesting how imbalances increase candida, fungal, parasitic, and bacterial infections along with racing thoughts, anxiety etc.

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.

My son had low ASO but high DNase with symptoms. Treated with abx and symptoms improved. My doctor was trained years ago to take any titer over 4x higher than normal and treat. We also had HSV-6 15x normal. Treated with Valcyclovir and saw improvement in 36 hours. Now at zero. Another Dr. argued titers meant nothing...he should come live with us and see the difference!

I would eliminate GMO food as much as possible. Besides inflammation studies are suggesting a chelation process that eliminates crucial minerals necessary for communication signaling in the body. Magnesium is one that is depleted effecting uptake of vitamin D,hence low levels in some kids and many other important functions. Serotonin necessary for creating tryptophan for restful sleep and less anxiety is effected from a compromised gut. I saw a video from a MIT Dr.which explains this. When we went with the cave man/ Paleo diet per our Dr. his IGG allergy numbers dropped drastically in 6 weeks. One more layer!

Our Dr. uses the neuro spect scan to visually see areas of limited blood flow in frontal lobes and then to check improvement after infections and allergies have been addressed. It shows science based evidence. Don't understand why its not broadly accepted. Unfortunately the soft ware malfunctioned for my sons test. I think it would be very interesting.

First off I agree with Mom of OCD boy, blood work is number one. I am a newbie to here but not to PANDAS and I am talking from my own personal experience. We have had both the overeating and weight loss of 30 lbs in two months for an 11 year old boy. Both improved in 36 hours with either and/ or an antibiotic, anti- viral, and a steroid burst. At 6 the week he got PANDAS, (no idea) I would call my husband over to look at our son literally shoving food in his mouth. You would of thought he had not eaten for a week. At the time we also regressed to stinging pains in penis and bed wetting. All ignored by Dr.s and therapists. At 11 the thought pattern was if I don't eat "growing food" I won't get to tall. He was eating a little but no healthy food. This led to losing 30lbs and aggravated the problem since bad food increases inflammation and we ended up in the hospital. From this journey for me I learned over eating was probably caused by a hormonal inbalance of Leptin, the receptor that tells you you are full or inflammation in the brain responsible. Still don't know about the genital pain but have met a few moms who did the penile scope on their boys to no avail. Comes with the disorder. When he was 11 with anorexia too, beforeI got to an immunologist due to wait list, our pediatrician gave us a steroid burst. 36 hours huge drop in OCD and able to eat normally. Lasted about 6 weeks and then it came back. Finally at the immunologist, our Dr. Does everything slow and methodical. As a mom watching your child disintegrate this is very difficult but it does show you what is working. Blood work was done for multiple infections and allergies. Took 5 adults to hold him down. Fortunately the Dr. Was willing to work with him or he would be in a home. First thing addressed was diet. No dairy! Very adamant since in this immune state his Dr. believes you now have a predisposition for Diabetes. Not easy, my son craved ice cream, as in multiple times a day. I learned what they usually crave is what you need to take away. Fun! The immune response gives you a morphine like feeling giving relief to the anxiety until the next hit is needed. I found this to be true for every food he craved. The difficult one was corn because the blood panel said there was no allergy. Thru another mom I learned about GMO'S and over 90% of corn has pesticide built right in. Two different types, one blows up the stomach of bugs, what does it do to our gut? The other is systemic, can't wash off,and is a neurotoxin and endocrine disrupters. When I switched to organic corn we lost the craving. Same with soy. I have become a detective. Diet was difficult and didn't happen overnight..lots of stevia for sweetening and organic chocolate. I would say at least 6 month transition with more cooperation as he feels so much better.. Our Dr doesn't do Gluten Free or rice because he sees it still irritates the immune system so no wheat or rice and whatever is flagged on blood work panel. We do blood work every 6 weeks to look at antibodies. He has done immunology for 30 years and saw this made a big difference. Then we taught him something new! My Pandas son started doing the Paleo/ caveman diet because that is what his big brother at college was doing and it was cool! Being the information junkie I have become I read everything and it's suppose to be very helpful for immune issues by rebalancing the body to it's more natural state from years ago. Needless to say my son's allergy numbers went from life threatening to completely normal! His Dr. now puts all patients on Paleo but allows the kids 2 slices of very white bread or white rice once a day. Less reaction and kids can have a sandwich or wrap at lunch. We don't have celiac so I would ask your Dr first. There are cookbooks for kids that has helped. Maybe we can do a section on recipes for smoothies etc. I have found a little bit of beet hides spinach by making the smoothie bright red. I have also paid him not to drink a gatorade at sports since there is flame retardant in it not to mention corn and dyes. He regained all the weight but in muscle and looks and feels great. Then his Dr. addressed each infection. We had strep, mycoplasma pneumonia , Herpes virus 6. I think possibly Lyme but his Dr doesn't address that. That's why I am here. He is back on honor roll after losing ability to read with comprehension. Math is a little slower. Most important he has color back instead of that pasty white and is enjoying his friends and family again. A word of caution. Tread carefully and slowly, watch how you present changes. You don't want your child obsessed with worry about poisons in their food. Making it a healthy transition for the whole family is better and if you don't buy it it will at least cut down on their exposure. Because of awareness a lot more is available such as non GMO and organic potatoe chips, corn chips and popcorn. The author of Saving Sammy met a curious Dr. Who did blood work on all of his patients on the psych ward. Guess what....infections were found on a majority. The psych ward is the worse place for my son because if a person is sick they will trigger him and make him worse. Same with airplanes! At a conference a Dr. Found this hard to believe until multiple parents told them they had the same experience. It makes sense if you think about times when you sit next to someone who has a cold. If you didn't get sick it is because your immune system did its job and revved up and got rid of the germs. Our kids immune system revs up too but since it is dysfunctional more inflammation is created in the brain and we get more OCD, ADHD,Tics etc. Since we are on prophylactic antibiotics and anti-virals this has not been an issue and all his titers are in normal range. I would like to learn how to eventually get off them. An interesting FYI when you get flack about antibiotics at least i do....20% of antibiotics are from medical sources and the other are pesticides such as Round Up (patented as an antibiotic ) and food sources. Hope my journey may connect some "dots" on yours. 3bmom

Hello, I am a newbie but not to PANDAS. We have been on this journey for 8 years. Most of that time I was the Dr. After being told we were beyond their ( the Drs scope). I am computer, Facebook, blog challenged spending to much time reading about the immune system. I did post what has helped us but in response to an anorexia parent if you want to read it there. We had that issue too along with a lot of the same symptoms you are experiencing. Hang in there. 3bmom Did you do viral titers too with blood work?