nicklemama

It's anti inflammatory. Yes it works, to a degree.

I've wondered if this isn't the case for many or most of our PANDAS kids or perhaps the kids labeled PANS when no strep trigger is discovered. My son could very well have AE. He fits the description but he's never had an autoimmune work up nor has he had a Neuro work up. This is the very problem and it was discussed on the video. He presented with sudden onset mental illness after flumist. That's the road every doctor went down....mental illness. That was cautioned against on the video. This is what I'd love to scream out at every doctor, stop thinking every person who presents with mental illness is actually mentally ill. Most especially when they were perfectly functioning individuals and suddenly they were not.

Ibuprofen is the generic form of Motrin and Advil. I'm assuming everyone here uses the words interchangeably. I buy the name brand Motrin for my son and myself because I feel it works better.

I just have to respond. This is completely unethical. Its experimentation on a human subject without authorization or the subjects permission. Its a really big deal in the research world. One must jump through many hoops in getting permission for trials involving humans. Now we have insurance companies experimenting on people without any guidance or training whatsoever. What kind of Orwellian society are we coming to? Scary. She needs legal advice.

I am with LLM. The AP may have very good reasons he wants to move your son and may not be able to say so, due to privacy laws. Moving kids out of classes is really not the norm, so I'd be inclined to go with what is offered with the knowledge that it was offered without your suggestion. There is most likely something going on you are not privy to.

You don't need the rest of the results. This shows likely PANDAS. I don't know what exact terms would be used as in, highly likely or likely, but these are PANDAS results. My guess, based on how much over the range D1 and tubulin are, its highly likely. My son was in the study group. He had high tubulin and high D2 and his CamK II was 147. He was in the lower PANDAS range. They've changed the ranges of normal with the new lab (probably due to different calibration and maybe the control samples).

Sorry to be the party pooper. Twenty one days of abx is still in the very early stages. Emotional meltdowns from disappointments was one of the last things to go for my son. It takes a long time to heal the brain. Expect these ups and downs along the way.

ALAMax CR made by Xymogen has a chelator, EDTA, in it. My son has been taking it daily for two years. He has been taking an omega three fish oil for three years with high amounts of EPA, Nordic Naturals Ultimate Omega. Those gummies have very little actual fish oil in them. If your child cannot swallow the large fish oil pills, and they are huge, try gummies or liquid from Carleson. It tastes good. Carleson is a high quality fish oil that is filtered so you don't need to worry about mercury and other heavy metals being in it. There is a PANDAS mom who is a rep for Carleson here in MI and so I've had the opportunity to sample the gummies and liquid. I give my son Vit E and Vit A made by Carlesons.

I don't know if my son is high histamine or not. I guess he should be. He was positive on the skin prick testing for dust/mites, tree pollen, outdoor mold, feathers, cats. He takes a Claritin each morning and it mostly keeps his allergies in check. When they flair up, I use Flonase and Patanol eye drops. He showed sensitivity to brewers and bakers yeast on the Alletess IgG food testing.

Since a vaccine got us into this mess, I'm not going to be to eager to jump on any PANS vaccine!

I think they are different. My son's hyperactivity has diminished along the course of the way. I think when you can reduce the brain inflammation you will see a reduction in adhd. I'm not sure the same can be said of "true" adhd. Maybe I'm wrong and adhd kids also have brain inflammation. I do know that adhd meds don't work well in many PANS kids. We've never tried them.

I was in your shoes over 4 years ago. Sudden onset after illness, age inappropriate separation anxiety, emotional lability, tics. All hallmarks of PANDAS/PANS. Its time for you to get yourself very well versed in PANS so you know what to ask for and what appropriate treatment is. I recommend pandasnetwork.org and Beth Maloney's new book Childhood Interrupted. If you want to understand OCD, which your son probably also has and you don't recognize it, try Tamar Chansky's book Freeing Your Child From Obsessive Compulsive Disorder. It has wonder descriptions of OCD. Until I read that book, I did not understand the scope of my son's ocd, how to deal with it and how his emotional outbursts were tied to ocd. As for talking to friends and others about it. I did not find talking about it made it worse. We've been completely open with our son about his illness. You will more than likely have to deal with the school. There are documents on pandasnetwork that can be printed out for the school. I would wait until you are more familiar and see how the course of his PANDAS is going to play out. I'd be open with him. He's nine. He knows something is wrong. I think talking about it is reassuring. The school and your friends are not going to understand it all, in the beginning. Just fair warning. Its really hard for people to wrap their heads around infection causing mental illness. Its hard enough as parents to accept this disorder. You have to put aside everything you thought about medicine and doctors. You are lucky the pediatrician recognized that strep can cause tics.

Its taken 4 years to get where we are today. My son was 5 when this started and just turned 10. Our path has been very similar to SF Mom's. Our list looks very similar. I don't think my son is 100% but I'm not at all certain. He's certainly 90-95% back but we aren't really sure exactly since he was so young and its been so long. He takes a lot of pills each day to maintain. We always try and keep in mind he's only one infection away from falling off the cliff again. No way do I think we are out of it. Not for a long time yet.

This is a very good question. Don't know the answer. DS is also compound heterozygous. About two years ago, I took him to an integrative doc and did testing. He was started on methylB12 injections. After a year of injections and going to see a doc who has started treating PANS, we found his B12 sky high. She stopped the B12 and he now uses a cream, Neurobiologix Neuroimmune Support w/ B12 in it and his levels have started dropping but they are still above range. He's made a lot of improvement but there are many factors contributing. His new doc says too much B12 can make you angry and irritable.

You are correct. You can give saccaromyces bouillardi with abx.

My son has been taking it daily for 3 yrs now. I started out using Florastor brand. Its really expensive and I now take it too. I started buying Yarrow brand at the recommendation of someone here. I'm not sure how you would know the difference between the two, except for the price.

We use Sprye rinse every evening. It has xylitol that has antibacterial properties. It does not stop flare from teeth loss. I always start with motrin for 24hrs, giving it every 6hrs. If that doesn't halt it, I call the doctor for a 10 day course of clindamycin.

Would not do that in any child, PANDAS or not. If my memory serves me, this vaccine has not been tested in children under the age of 16 or 17 and has not been tested for effectiveness in males. Recent discussion of this particular vaccine reveals that it's unknown how long the effects will last and giving it to young kids may very well mean they would be unprotected during the years they'd be most likely to contract HPV. How ingenious of the manufacturers so that a young adult would then need to vax again and line the pockets of the company. This is a 3 vax protocol. Boys are not at risk of dying of cervical cancer from HPV. In the Western world, neither are women. I will be upfront and say this is a vax my son will take a pass on. I'm not willing to risk exacerbation vs the risks of not being protected against HPV. Wouldn't let a daughter have it either.

It's a positive sign. Just prepare yourself for the ups and downs that there will be.

I'm trying to figure out how a positive titer test rules out PANDAS. I actually believe it's the opposite, it helps to rule it in. You will more than likely need to go see a doctor who knows more about PANDAS.

My son tics when things get really bad and he has transient eye tics. He's been taking alpha lipoic acid for two years without any problems at all. I really think that 23and me test would be very insightful and help with med choices.

I think it's the liquids that are tougher and taste so awful. My son has never, knock wood, had issues with biaxin and he's been on it for about 9 months now. He does take it with food.

My son never tested positive for anything for two years....no strep,mycoplasma pneumonia, HHV6 or other herpes viruses, CMV, EPV, Lyme. He was still considered PANS. When we finally found a local doctor willing to look more in depth again( we were originally Dr T's patient and then two Ivigs with Dr K) she found he was positive for ehrlichia and anaplasma. Treatment for those has put him in a really good place. Keep looking.

Great news.

DS is 10, 74 lbs. He takes 250 mg twice a day. The pharmacy does not carry 250 mg pills, so I am given 500 mg pills to cut in half. Works fine for me and I think its cheaper. Do you have an HMO? When we had an HMO, they were limiting in how much azithromycin I could get at one time. I think it was 8 pills. I had to go to the pharmacy every eight days. We switched insurance plans at open enrollment and no longer have this problem.