3bmom

Have you done diet? My DS had the anorexia component too. When not in a flare I never noticed Dairy being an issue except for occasional exscema. When we went dairy free we saw a huge improvement. When we continued with diet and did Paleo diet it was night and day. Last week I had lunch with a friends daughter who struggled with anxiety, ADD, mood swings and C-diff for years. She had gone Paleo and felt great and is now off all meds. I know I sound like a broken record but the GMO food and Round up pesticide that is used with it destroys the gut bacteria thereby rendering the immune system dysfunctional. It does this by chelating (holding) important minerals till they die. Our intestinal flora has a Shikimate Pathway that is disrupted creating havoc on the immune system and inflammation. Many believe this is the first Domino that then takes a path based on your genetics. A pig study in Austrailia showed GMO fed animals no longer have intestines that are usable for sausage casings because they dissolve in your hands. This makes sense based on allergies and food sensitivities that are now leaking thru our gut into the bloodstream and activating an immune response. I have heard others do well on the GAPS diet too. Diet is not as hard as you might think and each little step helps remove a layer. Slow and steady works too.

http://news.yahoo.com/original-cheerios-gmo-free-224845104.html

For us Math is a huge red flag. my DS has been stable for 2 years but since his Math hasn't returned it makes me wonder if we have missed something. We are taking Algebra I for the second time. I thought maybe he just missed some concepts from his severe flare but it is still a struggle. Other subjects he is doing great in so I am thankful for that improvement. When sick he was even losing his ability to read. We did some of the suggestions from momwithocdson that helped with confusion. We are focusing on other areas like art but as a mom who knows he was gifted in math it is sooo frustrating!

I just got this petition today. It gives me chills. My DS Dr and another PANDAS Dr said they have grave concern that are kids starting in July will no longer be treated with antibiotics and antivirals because it isn't under the "standard of care" for mental issues like OCD and would be considered off labeling. Currently there is legislation that they are trying to pass to stop all off labeling. I have been asking around to find validity to these concerns and Randi's plight speaks volumes!

Most PANDAS/PANS Drs would address those ASO titers. As peglam mentioned a lot of our kids are asymptomatic and only show neurological symptoms to strep. As you read on this forum you will find the tics may be due to a variety of infections,allergies and food that have rendered the immune system dysfunctional. our Immunologist says it is the innate immune system that is collapsing. There is great info on this forum. Use the info to be informed with the Dr. Most Drs don't have a handle on this. PANDAS has only been studied since the 90's (coincidentaly when we started GMO food) and that is like 48 hours in the medical world. They just haven't seen patients like our kids and may have difficulty understanding the correlations.

I can only go off of my experience but we had symptoms improve when we did an antiviral, valcyclovir along with our antibiotics. It seemed the immune system has a difficult time eliminating the bacteria while it is also dealing with viral issues. We also addressed diet, no dairy, gluten, or GMO corn and soy. Think of the immune system as layers of inflammation overwhelming it to a point of dysfunction. Each layer you can remove will improve behaviors and lead towards healing. Maybe someone here can explain myco. I don't understand it very well except it can be difficult to get rid of. My DS wasn't very high but it didn't budge for over a year until I found Myco in myself and started treatment. I believe family members play off of each other especially with strep. Hopefully your tests tomorrow will also have some answers. Good luck!

Beth Maloney just sent out an email that 60 Minutes will be airing a segment on mental health and hospitals.

We found improvement when put on the antibiotic for myco. His titers have been very slow to come down so don't know if antibiotic is addressing something else. Before our Dr uses antibiotics you have to change diet. The diet is very important because of the immune systems inflammatory response to the multitude of changes made to our food in the last 25 years. I have see that if you don't change the diet you can cancel out the gains. We are GMO free, dairy, gluten, corn and soy.

One more thing Trinitybella, did you have her ovaries and uterus checked for growths? That can cause OCD too.

I found this very interesting! Our DS anorexia improved with antivirals and antibiotics. You guys show me I need to do the genetic testing. Have been to wiped out from last flare but do want him off prophylactics. Did you go to Amy Lasko or someone? Or did you figure out all the mutations yourself?

I find this interesting. Who ordered the test? Was it online? Maybe if you contact the lab sometimes they can tell you the names of Drs that regularly order it and you could contact them for a consult. Good Luck!

Intuniv worked for our PANDAS son who no longer could get organized. It's helped a lot except Math ability has not returned. Our oldest was very hyper but did well in school. I always had him out playing about 2 hours a day. We found food dyes were a major factor for hyperness way before the studies came out. Have they done the alcat testing? Any foods especially GMO and splenda type sugar substitues may set off hyperness from the cytocine cascade.

My gut feeling is vaccines are suppose to turn on the immune system to make antibodies so you don't contract the illness at a future exposure. Our kids immune systems are dysfunctional. Any time you turn it on you will risk " Friendly Fire" on brain tissues. I met a mom at a conference who did IVIG and her daughter was at baseline till she gave her a vaccination. She was back to square one again. I read that New York and other states are enforcing mandatory vaccines. This makes me crazy if we are to lose this right. If others are vaccinated there should pose no risk except for those of us who say no. A pregnant nurse in NY lost her job for not getting the flu vaccine! At Cal Tech the Dr who wrote the book, " Infectious behavior" said that mouse studies show immune activation during pregnancy may cause Autism, schizophrenia etc. Isn't a vaccine immune activation? The only year I am my DS got the flu shot I got the flu and 4 days later he got PANDAS Sorry for the rant but if I could turn back the hands of time ...

Our DS had a rash on his stomach when he first got PANDAS AT AGE 6. He had it for one year till It went away when we took out 2 dental stainless steel caps. Needless to say we were very worried about braces. We have had them 2 years and no problems. His allergies were life threatening at the time but we now are near normal with a GMO, dairy, wheat and corn free diet. Figure that is an important inflammatory layer removed.

I also look at what he has eaten before I panic like pizza or ice cream. If it still is escalating after 3 days I up the antibiotic.

Joybop can you explain concern for rash on belly? My DS had one for a year, the same year he got PANDAS. My older DS has it now.

Have they offered a fecal transplant? I sat next to a nurse at a charity dinner, ( I know gross dinner topic) and she works with a Dr who gets wonderful results for c-diff with this procedure. They sterilize it and insert and it helps recolonize the flora. Seems simple and I have always wondered if it would help with behaviors and the brain-gut connection.

If you are positive for strep I would treat. Strep is nasty and that is why there are other autoimmune issues besides pandas like rheumatic fever, scarlet fever etc. I go to a Chinese herbalist and she even says if my kids get strep I go to the pediatrician. It's great you have a naturpath on board and you eat organic. They can help you support the gut while on antibiotics. It will be interesting to see if her sigh disappears. You also might find other subtle changes you didn't realize come with strep. Good luck!

I agree with Quannie47. A good Dr will run other tests. We have been on Erithimycin for two years with good success but also take antivirals for Human Herpes Virus-6 which he was almost 16X higher than normal. We too had most of what you describe as a deterioration from a normal child. I and some Drs see PANDAS and Aspergers/ Autism as a Venn diagram with overlapping symptoms due to immune dysfunction causing brain inflammation. Each layer you address such as infections, diet, and detoxing will lessons symptoms and move you towards healing. I feel diet is huge and our Dr won't treat unless you do diet. At first it is overwhelming but each step no matter how small helps take a layer off. We are GMO free, dairy free, wheat free and especially corn and soy unless its organic.

Definitely a new Dr.! A lot of our kids are asymptomatic meaning they don't have a sore throat or feel bad because their immune system is dysfunctional but as parents we know because of behaviors. Also the immune system just needs to be turned on from a previous infection which your blood works indicates, to have friendly fire. This is when the immune system attacks itself. With strep an example is rheumatic fever effecting the heart and our kids effecting the brain. Still don't understand why this is hard for Drs to get!

I would call around. I have also had luck with Urgent Care since I didn't have a PANDAS Dr. For years after initial diagnosis. Our son at 11 lost 30lbs with food issues too. Have them check for HHV-6 also. He started eating within 36 hours of an antiviral. When we added the antibiotic within a week he would " forget" to exercise. That's after 5 hours a day at the gym. Some of the blood work should be quicker than 2 weeks. Hang in there!

A lot of good info from everyone. We have had mold issues too. In regards to the corn. My DS tested fine for corn but I noticed he craved it which for me has always been a clue. The craving is due to a morphine-like effect when the immune system is triggered. I learned that over 80% of corn has a pesticide inserted into its DNA which means every bite has toxins being produced in your gut. This genetically altered corn is in most gluten free products unless NON GMO Project Verified. Our IGG or IGE numbers were over 1,000 and life threatening. When we switched to organic corn and non GMO food they dropped to low 300's. Behaviors dropped too, Maybe this would help with her headaches. This corn is being proven so toxic that in November Mexico has ordered all farmers to stop growing it effective immediately!

I wasn't at the NE conference but didn't the mice studies show strep could cause OCD thru the nasal membranes? Have you had a complete nasal swab and culture? Strep, staph, molds...?

Did anyone check for HHV-6? Besides strep, we found that virus was causing a lot of the sensitivities to light and smell. I also found that to be true when my Father-in-law got a wobbly gait and memory issues. We are on valcyclovir 3x a day along with abx. Diet is important too. Look at what he craves for clues to inflammatory foods. The inflammation causes a "morphine like" effect so they self medicate with the foods that actually cause harm. Dairy was huge for us. Major temper tantrum when you try to take it away but huge improvement when you succeed.

Friday I tested positive on a vaginal culture for strep B. mix up at the pharmacy so haven't started abx yet. My DS has been stable for 2 years and last night I saw ( heard) a flag, "You don't control me" when I asked him to turn down his music. He is on prophylactic abx and antivirals.