nicklemama

Enhansa from Lee Silsby. If your doctor writes a script, it may be covered by insurance. Call Lee Silsby and inquire. We get 600mg twice a day, so 60 600 mgs pills are $15 a month with insurance coverage.

We've been using alpha lipoic acid for nearly two years now. Dr Agalliu's BBB research paper will be out really soon.

At this weekends conference in Providence, nothing was mentioned about using the Cunningham test to determine a need for IVIG. In fact, the criteria promoted for receiving IVIG was to reserve it for those children who were severe. It was also the opinion of most of the experts that IVIG should not be used frequently and that if you are not getting a response, to discontinue using IVIG. The rationale is that it is not without risk. There should be a risk benefit ratio discussion. Don't shoot the messenger. Thank you.

We use enhansa which is a compounded form fo turmeric. Get it from Lee Silsby. My son never tested positive for any thing either until we did Lyme and co testing. He was positive for ehrlichia and anaplasma and has symptoms of babesia. Treatment has greatly improved him.

Dr K and Dr T are the real deal and many of us have paid for phone consults. We live 5 hrs from Dr K and saw him in person and then twice for IVIG and follow ups. Did phone consults with Dr T.

The most important thing you should know is having high strep titers is NOT a requirement for a diagnosis. PAMDAS is the form involving strep. There are other infections that trigger this. It's called PANS. My son has had PANS for 4 yrs, diagnosed 3 yrs ago. Dr K in Chicago is our expert treating doctor. We have a doc locally we are working with day to day. Being perfectly fine one day and falling off the cliff the next is a really telling sign and that's exactly how it happened for my son.

It was the only explanation for why my son went from a typical 5 yr old to a raging, angry, irritable, hoarding, anxious child who could no longer fall asleep and was having gory, graphic nightmares and intrusive thoughts and who had such severe separation anxiety I could not leave his sight, literally overnight, two days after receiving a flumist vax. Took a year and many wrong turns before I figured it out. Yes, that's right, no professional could figure it all out.

The divorce rate goes way up on families who have children who have serious/chronic illness. My husband is very supportive and does his best but he doesn't understand it like I do. We don't get out as a couple very often and it has taken a toll, no doubt. We've been married 31 years and our son is nearly 10. He's an only. I find myself wondering where we'll be when our son can finally leave home and be on his own. It will be about the time I will need help and extra care from the toll of all this!

Any one heard of or have experience with Dr Prasad at CHOP? I have a family new to PANS who have been referred to this doc who is supposedly interested in PANDAS. Knowing what I've read here about CHOP I'm leery for them.

The problem with testing for infections is it would force doctors to start prescribing more antibiotics, which are harder to come by than crack and that might send them over the edge with their current mindset towards less antibiotics.

Four years ago, this month, my son, then 5 and now nearly10, received a flumist vax and things went very wrong, very fast. You are not wrong to make the connection. My son has never been diagnosed with strep. Not before and not since. My developed SPD, among other things after that flumist. Severe separation anxiety, OCD, anger, irritability, etc..... No one would listen to me. His ped told me to take him to a children's lockdown psych facility if things got really bad. Why on earth would she recommend this to a boy who was perfectly well functioning before flumist? Be very leery of psychiatrists. My son was placed on an SSRI at age 6 and became suicidal. The psychiatrist did not know you cannot give regular dosing of SRRIs to PANDAS kids. It took a year and a lot of wrong diagnoses before he was finally diagnosed with PANDAS and that was because I saw the Saving Sammy episode on the Discovery Health Channel. In all that time, no doctor (and there were plenty) recognized my son had OCD. Not the psychiatrist, not the psychologist, not the OT, not the LMSW therapist, not the neurologists, not the pediatrician.

I have no idea what testing he does. There is an Ohio PANDAS Facebook group that would know more. I'm not sure if you can find them on Facebook , though, because it's probably private. I'll do some asking around if you'd like to join them.

Dr K, Ohio, has been mentored by Dr K in Chicago. I know several who see him. He does IVIG, too.

Here's another be sure you know what OCD in children looks like. I didn't think my son had OCD either. I was completely wrong. Read Freeing Your Child of Obseesive Compulsive Disorder by Tamar Chansky. Great descriptions of OCD. I didn't read al the replies but I'd bet a lot of money your son has OCD.

This was a med that was offered for my son prePANS dx. I chose the SSRI, Celexa, instead and that was a huge mistake. Dropped that and went to lamictal. It helped. He was on lamictal for a yr and then we weaned him off after IVIG #1 when he was doing so well. I recommend it be given a trial. When DS is flaring, I wish he were still on it, but mostly it's just fine now off it. It has a large margin of safety, if you are not allergic to it. It MUST be titrate up very slowly to avoid allergic reaction. I have a friend on it for seizures. She takes a huge dose and has for at least 10 yrs. works well for her.

This is relating to the Cunningham test. Sydenham's chorea diagnosed kids tested higher for dopamine 1 and 2 autoantibodies vs normal kids. Kids with higher dopamine 2 tended to have correlatingly high ASO ( antistreptolysine O ) titers. Those titers are used to diagnose strep infection.

It depletes glutathione levels. Went to a conference on Sat where one presenter, an MD, said it's implicated as part of the package of ASD. He had a study sited that showed higher incidence of ASD in kids who received Tylenol with MMR than those who did not. Studies can show all kinds of things and I haven't read this study personally. He said Tylenol is very toxic in overdose vs other pain relief OTC meds.

Check for Lyme, coinfections and mycoplasma. Might want to check viruses too. Don't know how long it's been since you've had a consult with Dr T, but now he does a lot more testing for a lot more things. My DS also has/had very low ferritin levels. We are supplementing under a doctors supervision. Try adding taurine 1000 mg with the melatonin. It works well for my DS. Low ferritin causes restless leg syndrome. My son slept terribly and was all over the bed.

My son has two tick borne infections and we have NEVER found a tick on him and have never seen a rash, but apparently he's been bitten at some point. We are big campers, hikers, bikers. Outdoors in the woods and fields all summer, every summer in a state not deemed to have a Lyme problem.

My son never had any infections turn up on the testing done through Dr T back in 2010-11. Got better on abx. Decided to do IVIG with Dr K 7 months later. Did well after IVIG but not 100%. Lots of wax and wane throughout the next 18 months but overall pretty good. Caught pneumonia, finally a infection. Went straight down hill. IVIG #2. Wax and wane and not doing as well as after #1. Found ehrlichia and anaplasma through Lyme and coinfection testing 4 months later. Had it all along. Getting right to the point...no, I don't think your son has morphed into mental illness. I suspect an underlying infection and I would do Lyme and co testing. If you haven't also had Dr Tt's battery of tests, it's time to consider it. I had his testing done a second time and second time around he'd added even more to test. His local doctor did it all and that's where we found coinfections and high CMV. We are treating coinfections and he's as good as he's been since this all started.

Congrats. That's so encouraging to hear.

What LLM says, lol. My son originally took methyl B12 injections once a week. After a yr, he's been placed on a cream, Neuroimmune Stabilizer by Neuro Biologix that has hydroxycobalomin, methlycobalomin, 5 MTHFR (folate), P5P and vit d in it. DS originally did very well on the injections but was maintaining some irritability, which decreased after starting the cream. The directions call for 1 pump, twice a day. The second dose makes him irritable, so he gets only once a day. My son is compound heterozygous MTHFR. His doctor said B12 is known to cause irritability.

We rarely have a babysitter. Early on, DS had such intense separation anxiety, it was unthinkable. Then, when he was a little better, I was too afraid to. We are having a sitter tomorrow night for the first time in ages. His best friend is coming over, the 16 yo boy next door is sitting and we are going out with his friends parents ( who are our friends too). For the past four years, mostly DH and I go out separately and the other stays home with our son. Never thought my life would be like that. We don't have family anywhere near to help. We are on our own.

I've been considering lowering DS 's dosing of probiotics. He's taking 100 billion Klaire Thera Detox. He's a gas factory. It's so hard to tell what's nearly 10 yo boy who loves to fart and loves to talk about it and what's really too much. He and his friends love joking about, talking about and passing gas. It would save me money too. Klaire is not cheap.

Did you see how many probiotics she was taking? 7 capsules of culturelle, two Klaire products (one of which my son takes, the detox) and the custom blend? She was giving her daughter over 250 million a day. That's a lot. She also cut out the other biomed supplements, so who knows which did what. Everything in moderation. Too much of anything can't be good.