nicklemama

The labs survived. The tornadoes did not affect the immediate area where the lab is located. The lab is located in a complex known as The University of Oklahoma Health Sciences Center in Oklahoma City, very close to downtown and near the state Capitol. The medical school is located there as is the major teaching hospital plus lots of research labs.

I agree w/ S &S. Quite frankly, I've been surprised at the number of PANDAS parents willing to throw this mom and her son under the bus on the various boards I read. Many don't want to be associated with mental illness. Last time I checked OCD was considered a mental illness. I feel this story could help by showing what happens when the medical community can't or won't provide proper treatment and refuse to believe infection can cause mental illness. Once upon a time, parents would not be open about their child's epilepsy, as it was considered a form of mental illness. Knowledge is power. Hiding in a closet gets you no where. I'll not hide.

My son has never had a known tick bite but we are campers, hikers, bikers.

It's really a individual thing. DS loves yogurt and he's never had problems with it. He's PANS. Low titers to strep, never cultured positive.,never suspected he had strep. He currently has ehrlichia, anaplasma and babesia. MycoP pmeumonia last Nov set off another exacerbation.

Don't count on Dr Chugani. If your child fits *his* criteria, you'll get the PET scan and treatment. If not, you are out of luck. No idea when he might publish. He's been doing the PET scan with a special tracer he formulated for several years now. By his criteria, I mean his criteria of PANDAS. His PET scan has been negative for a number of kids known to have PANDAS.

It's very see saw. In our two experiences, it was three months out before we saw major improvement and more stability.

DS is compound heterozygous. For a yr I gave him injections of b12 and methyl folate tabs. His new doctor recommended Neurobiologix Neuroimmune stabilizer cream. It was formulated by Dr Stewart Kendall. It has b12 and methyl folate. It does cause DS arm to be a pinkish red but it fades. The stain is not permanent. It washes right off in the bath. DS has never had trouble taking b12 or methyl folate. My guess is he does not have other mutations, so don't assume he will have trouble with it. Just be watchful. I am going to do the 23 and me, though.

That's interesting. My local CVS carries Watson minocycline. It's the only generic brand I will take. There are a lot of people on minocycline for RA and Watson minocycline has the best efficacy, according to many.

Thanks! This is really helpful.

I'm using Frontline (fipronil and methoprene) for fleas/ticks about 6 months out of the yr and Heartguard Plus (ivermectin and pyrantel) year around for heart worms, roundworms and hookworms. I can't use Advantix. I have cats. You cannot have a cat in contact with a dog treated with Advantix for 24hrs.

I get mine from directly from my doctor. You can order it online from other online retailers. The charge for a cold pack for shipping is hefty. If someone knows of a less expensive way to get it online, that is an option.

DS takes two Klaire TheraDetox (100billion) and 1 Yarrow saccromyces boulliardi a day.

I wouldn't think so because they have to bite to be killed by the flea/tick treatment. I'm a little disheartened to see the Frontline I use on my dog is not as effective.

New or emerging behaviors are telling behaviors. Maybe time for something different abx wise. Maybe she's got an underlying infection that should be explored. Methylation/MTHFR mutations, Lyme and/or coinfections?

My son was violent. No meds involved. Fortunately he was 5-6 hrs old then. I'm with MomwithOCD. I can't imagine my son being able to organize, plan, buy or carry out such anything, even if he had thoughts of it in his mind while in PANS exacerbation. There is more to it. On the other hand, folks need to know this disease needs recognition by the medical community, treatment, doctors getting onboard, research fast tracked and insurance companies paying for treatment. There will be negatives from this press coverage. It's our job to turn that back against them and press for our children's needs.

I'm with Mayzoo. I don't think the abx has gotten rid of the infection.

You absolutely need to knock the myco P out. It's hard to get rid of. I've been taking minocycline for nearly two years now and my myco P IgG is still high. I have rheumatoid arthritis related to mycoP.

We do not have imaging nor labs to support. I am not a doctor. I can only tell you that he got sick after a flumist vax, as in two days later. I don't know what is required for a post infectious encephalitis dx. I can tell you I have read the symptoms and they fit. That is the dx assigned to him by his doctor. That is all I know.

This started in 2009 for my son. He was diagnosed one yr later and treatment started.Nearly 4 yrs later, we are still treating. His initial treatment with treatment dose abx for 7 months, followed by IVIG #1 and another month of treatment abx, followed by 17 months of prophylactic daily abx, interspersed with treatment dose abx when he was sick and flairing, ivig#2 after pneumonia, treatment dose abx again and he's still on treatment dose abx 6 months later. Found ehrlichia, anaplasma and babesia infections. Treatment abx for many, many months in his future. I know this may not be what you want to hear but its our reality. Others have different journeys. We have not ever been back to prePANDAS baseline. He's doing really well right now.

I think there is a blood pressure or heart drug that is a calcium channel blocker. I can't remember the name right now.

Here's my very best advice. Get it in writing. The lady in billing that you speak to is Patricia. 630-928-1048 x 2109. She handles the IVIG billing. When you call Dr K's office to schedule, you will be sent the contact info and procedures. You can then call Patricia. She'll already have the orders from Dr K and she'll give you the price and explain everything and send you written confirmation. Then, expect to get a call a few days in advance to request payment on a credit card. They will not take a check the day of the procedure. My second best advice is to request them to bill your insurance when you check out on the second day. You never know, they might pay like ours did. We did not seek preapproval and I was told the facility was out of network when I called about preapproval.

Interesting. I am on minocycline for rheumatoid arthritis. It works! There was a double blind study of minocycline for RA called the MIRA study.

I didn't realize my inbox was full. I cleaned it out so you can send me a pm.

I've read conflicting literature that says the 48 hr rule is not true. That said, my son has ehrlichia and anaplasma that is transmitted by the Lone Star tick and we never knew he'd been bitten. There is much to be concerned about and I'd press for antibiotics.

We have a BCBS policy but my husbands employer is a huge corporation that self insures and uses BCBS to administer the program. I think the most important thing is not putting PANDAS all over the medical records and insurance submissions. My son is considered to have post infectious encephalitis. It's diagnosable, has a code, and billable. I will say we have a high deductible policy, as that is the only choice we have for a BCBS policy. We left the HMO a few months after DS was dx'd with PANDAS. So, even with insurance, its not exactly cheap. It has cost us around $5k each time.