3bmom

Have you tried CBT? Would he be willing to give it a try to get rid of rituals? Out of 3 flares we have experienced one of them I was dismissed from our Dr as being beyond his scope and I had no blood work to give me a direction. We tried therapy and it helped a lot. For bathroom rituals we had to cover the mirrors in bathroom and bedroom. Wasn't easy but showed him he had power over the OCD if you can get them in a rational state. Good Luck!

Don't forget viral titers HHV 1, 2 and especially 6. HHV -6 was our worst flare when combined with strep. A report in Europe is linking it with Lupus. Some studies are looking at it as a stealth virus with MS and our Dr finds it prevalent in Alzheimer's.

Teenagers get the double whammy with hormones and everything at once. Dr T told me chronic fatigue is PANDAS unchecked. But is this chronic or a growth spurt? I did find viral issues with my older son who was tired and having focus issues. You have a Dr in place so don't panic. I think that is the hardest part. Dairy can be huge since it creates a morphine effect and also will contribute to the acne. You can make great milkshakes with chocolate almond milk and frozen bananas. Good Luck

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

Wow Advanced Member! Great idea to go to the vet. Only 20% of antibiotic use is from the medical community. The rest is food supply. Roundup ready soybeans, cotton, sugar beets and canola have the DNA of an unknown resistant organism crossed in it so you can spray heavily without killing the plants only weeds. Roundup is patented as an antibiotic. Because of resistant weeds the FDA in the last few months just approved even larger amounts of Roundup safe for human consumption. The company that makes this food also happens to make pharmaceuticals. Hmmm I. highly suggest organic. Dr T mentioned on a random genetic test his PANDAS kids had Parkinson's markers. Parkinson's is related to pesticides. My gut feeling... For what it's worth is our food supply reeks havoc with the immune system allowing dormant infections to surface that normally would be quiet and as it gets overwhelmed it causes friendly fire on our children's brains. I know so many families with kids with issues. I grew up in neighborhoods where people had 6, 8 or more kids and they didn't have any of this. Time for change.

Do neuro's start with bloodwork and infections? I wouldn't want to wait to find out. What did she eat before it happened? My non PANDAS son had focus issues in college and we found out his blood work matches my PANDAS son but no strep. Very high 20x normal HHV -6 and Lyme. His eating habits at the time were typical of a teenager. Dr T says a genetic marker he found in patients more than MTHFR is Parkinson's. not to be dramatic but the majority of corn in the US is patented as a pesticide and that includes soda. If she has been sick the brain barrier might not be able to do its job. Since you know Dr T I would go straight to him. He covers both worlds. Good Luck and keep us up to date.

The PANS Dr should understand a lot of our kids are asymptomatic and that includes clear lungs. It is why other members of the family should be tested since they can effect the PANS Child. Our DS worse flair was when his brother continued to be sick without symptoms. We did 2 five day bursts waiting for the Dr appt. and he improved dramatically while on them and then got worse when done. I don't know if this was from the infections since blood work showed strep, HHV-6 and myco or I always wondered if yeast gets out of control while on a burst. He reacted quickly to meds when put on them. Good Luck

On a neuro spect scan a child who was raging was found to have activity in the brain where there usually are seizures and improved on anti seizure medicine. Unfortunately the computer software went down during our scan so I don't know the exact area of inflammation. Our Dr. finds huge improvement after going off of Dairy. He does that before ANY meds. It was difficult, our son snuck out at night just for a milkshake but it was truly worth it. There is a book, " The Devil in the Milk" by Keith Woodford with studies showing the correlation of mental issues and also type 1 Diabetes with Dairy. Cows in the US are now fed GMO food which may explain the rise in kids with brain issues since 1992.

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.

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?

Our Dr. is old school and he treats any IGG titers over 4 times normal. Many Drs have been told to ignore this. I think that is part of our children's problem. Many people are walking around with silent infections creating havoc in others. My non PANDAS son dropped out of college for chronic fatigue and inability to concentrate. His dr said his HHV-6 titers were 20x normal and didn't mean anything! We are treating just like my other son and he is doing a lot better. When I was young if a sibling got strep we all got a shot of penicillin. Repeated strep, tonsils taken out. Now Drs get chastised for antibiotics and we probably allow infections to ping pong around the family. My DS has myco titers which haven't moved in a year till I started treating myself. I had no idea! Coincidence...hmmm Drs need to stop feeling guilty about antibiotics and aggressively treat all family members. 80% of antibiotic use is our food supply. That is what truly needs to change.

We too had a cute little homeless boy. We have not done IVIG, I am not opposed to it but Dr doesn't use it. We are stable and flourishing in school. I had two thoughts that hopefully might help. How much Valcyclovir? We are 1 gram 3x/day. We had to work up slowly maybe because of die off. We also take sertraline after the infections are addressed. I am not thrilled but our Dr can show on the Neuro-spect scan dark areas in the frontal lobes. He says the SSRI brings blood flow back into the area. We had almost no OCD before he starts it. We also do diet. I don't see much talk on this forum about GMO. Our food supply has been altered with the DNA of pesticides. Most corn in the US is patented as a pesticide and GMO soy has DNA of viruses and bacteria so it can be sprayed heavily with Roundup pesticide which is patented as an antibiotic. Diet isn't easy but I feel like we keep exposing our kids to food that puts their immune system on a roller coaster. That is what worked for us. I know our kids all have their own tapestries. Having been there I sincerely hope the healing continues for you. Hugs 3bmom

I found out later that my DS shouting out was a verbal compulsion that he covered up with jokes and disruption. When I asked the teacher to make note of it and let me know she brought it to the attention of the entire class. Needless to say things didn't go we'll. We had a 504 too. I would bring in the big guns for experience. They will have better expertise and maybe ideas to help.

See if you can get him to start diet. Not the easiest if in flare. At least try removing dairy. Did you test for herpes virus? Dairy and valcyclovir would of kept my son out of the hospital. They just convinced him I was crazy and gave us more issues to deal with. I wonder about October too. It always slowly started up. My guess mold, strep and illness at school but I also think all the Halloween candy being offered contributed. Hang in there.

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.

I agree with everyone. Get a new Dr. And tell the pediatrician to go listen to Dr. Swedo at the national pediatrics conference in Florida next month. A lot of kids are asymptomatic for strep, meaning no sore throat or visible symptoms except behaviors. The only way to know is thru blood work. Both ASO and antiDNase since they can be opposite of each other. Cultures can be negative because strep likes to hide. Mycoplasma pneumonia ( walking pneumonia ) is also a main culprit for PANDAS. My DS has been treated one year and his titers never dropped till I got treated. We are both asymptomatic, meaning lungs are clear. You are 2 for 2 for infections and the quicker you get this addressed the quicker your daughter can get back on track. Good luck!

Have you tested for herpes virus 1, 2 and especially 6 ? Our Dr. has found these to be a cause of seizures.

My 21 year old started having anxiety issues. He is not my PANDAS child but we did find he had a silent herpes -6 infection, and mycoplasma. Tested positive on culture for Lyme but chose not to do the myriad of abx. Doing well on non GMO diet and antiviral. There is a great book by Dr. Mark Hyman called " The Ultramind Solution". Goes thru the layers causing physical dysfunction creating emotional exacerbations. You are awesome being an advocate for yourself. Good luck!

So sorry what you went thru. Hits all my triggers. We went to the same hospital, "Best in the West" that gave him a PANDAS diagnose when age 6. Brought him back at age 11 with a terrible flare with all records in hand. Threw him in psyche ward with no treatment, no meds, no blood work. Just parenting lessons. Stress gave him a grand mal seizure the night we came home. i was too afraid to call an ambulance. How sad is that. They no longer believe or are allowed to believe. I realize it has to be bigger than the Drs. They don't do blood work because it might reveal something. Otherwise they would prove me wrong. Our case 3 infections and life threatening allergies all proven with blood work, evidence based medicine from a compassionate Dr. Check out where their biggest research funding is coming from. Children's in Boston took aPANDAS child away from her parents and she is now a ward of the state. I HIGHLY suggest a GMO FREE Diet. GMO's chelate minerals from the body especially magnesium, creating methylation issues, disruption of immune system, gut issues effecting serotonin and tryptophan for sleep not to mention allergies. I would also check into trying an antiviral. Hang in there..as my oldest son said when I was beginning to shatter, "it is always darkest before the dawn" and he was right! We are now doing well and reweaving the fabric of our family back together. Take a walk, visualize strength, support and healing. Hugs, 3bmom

On PBS a dr who did a neuro spect scan of the frontal lobes said he had a child who had rages and it showed in the area of seizures.

That is the Dr. That helped the woman who wrote "Brain on Fire". The article mentions ovarian cysts as a cause in some females. Today I read an article where they found mycoplasma pneumonia in an ovarian cyst. This article talked about mycoplasma pneumonia being a cause of child encephalitis and that 20% or more children are asymptomatic. We had the mycoplasma and HSV -6 along with strep. This info has been around for awhile. Blood tests would be a lot cheaper than a hospital stay.... Why don't they test.

No dairy helped us. There are mouse studies showing inflammation from dairy. My guess when in a flare its able to breach the brain barrier. We were on a wait list and that's what helped us. Also if you use soy make sure it is non GMO. Hang in there.

We experienced a lessening of rage when we removed all dairy. Never had a problem we could see with it between flares but it definitely helped. If you choose a soy milk just make sure it's organic so no GMO. Good luck. I think rage is the hardest.

I am confused. Our Dr says PANDAS is autoimmune encephalitis. There also is a great discussion about this on Radio PANDAS WITH DR T, the author of Brain on Fire, and the Stanford PANDAS clinic. I also just read an article in the NIH from 09 how mycoplasma has been causing encephalitis in children since the 40's and most of those hospitalized children were asymtomatic which was the case with us along with viral and strep. I got a positive culture with Lyme just recently with the new test but previously always tested negative so that may be an issue too. The article also mentioned a mycoplasma Penetrans in urine. Said it was of uncertain pathological significance in immunodeficient virus infected people. I have never gotten an answer to why so many kids have urinary issues and I know of moms who even did the penile scope. Could this be a piece of the puzzle? 3bmom

This opens up a world of possibilities! Thanks