mama2alex

What other mold markers did they check? Did you do an ERMI test on your home?

I'll PM you.

Have you tried eliminating gluten, casein, soy, corn and sugar, as well as food dyes and preservatives? I know it sounds drastic and difficult, but if foods are a problem for you, these are the most likely suspects and eliminating them all at once could give you some relief. It would also tell you a lot if eliminating these gave you some degree of relief - it would mean you need to work on gut healing. It's something you can do on your own - immediately. Basically, just eat veggies, fruit and lean meat, with maybe some gluten-free substitute pasta or bread (soy-free) for a week or two and see how you feel.

We saw him 10 years ago when I knew something was wrong, but didn't have a name for it (other than sensory issues, recurrent pneumonia and behavioral issues). I was mostly looking for a ped who wouldn't argue with me about vaccinations. He was very nice, and ran the tests any integrative doctor would run (from what I can remember). However, I found his explanations to be overly scientific and confusing - although I was much less educated in all this at the time. I have no idea whether he's educated in PANDAS/PANS. I have an integrative doctor in Redwood City I can recommend if you're interested, though he doesn't take insurance. He will look at strep titers, but also goes much, much deeper to find the root causes.

This isn't negative, this is honest! I'm sorry for all you're going through - I've been there. Hang in there, don't give up, and if at all possible, try to take care of yourself a bit.

It's not unusual for someone with Lyme and co-infections to develop POTS. These infections can be part of the picture even if her PANS was initially triggered by strep. Have you had her evaluated by an LLMD?

Our detox symptoms started within a day or less of starting the high-dose Cholestyramine. Trying to "clean up" mold while living in a space can be disastrous, so please be careful. He may think he's cleaning, but most likely he's just launching the spores/toxins into the air and all over the house! I would pause on the cleaning and do an ERMI test on your home to see what you're dealing with - toxic molds or "harmless" mildew. I can help you interpret the results once you have them. I have a "key" from our doctor that provides a sort of rating system for how bad things are. It will also tell you what types of mold are highest in your home. Also, if you see something that looks like mold in your home, I'd hold off on any kind of binder until you've figured out whether it's toxic mold and have either completely remediated or moved out. Our doctor absolutely refused to start the Cholestyramine until we were out of the moldy environment. He said it could cause a terrible detox reaction and really wouldn't do any good because it would be coming in at the same time we were pulling it out.

I can't tell you what's going on in your case, but I can share our experience with Cholestyramine (which btw we just get from Walgreen's). Once we got out of our moldy house, we both had to take it 4 times a day for a month. It caused our most problematic symptoms to skyrocket - for me it was almost unbearable pain, and for ds it was terrible anxiety and moodiness. We did it at different times, thankfully - I went first, then we did his in the summer after school let out. Once we went down to once a day, symptoms subsided. You might try stopping, seeing if symptoms subside, and then trying the BIND one more time. Or after a break, when symptoms have subsided, try a different product. Our doc says only the Quercitin (sp?) or Cholestyramine (generic) pull out mold toxins effectively. Also, have you fully addressed the mold exposure? If she's still exposed, there's no point in doing the binder yet.

So happy to hear you had such amazing results! There are a number of families on this forum who've gone to either Rogers or the outpatient intensive treatment at the Rothman Center over the years. We learned about the three week intensive therapy from other parents on this forum and it was the only thing that ever helped with our son's school refusal. I am a firm believer in BOTH medical treatment and CBT/ERP.

Wombat140 - Actually integrative and DAN docs in the U.S. give various B vitamin injections as part of treatment quite often. I wasn't recovering from pneumonia recently (after a week of Augmentin), so my integrative doc gave me a glutathione IV and B complex injection and I started to turn the corner the next day. The right doctors don't hesitate to use these tools.

We see a doctor who's very experienced with mold illness. He said the rule of thumb he goes by - and this came through seeing many lab results for many patients - is that a C4A result over 10,000 is very suspicious for mold. His patients with Lyme, but no mold, have pretty much been under 10,000 on the C4A. My son's result was about 18,000 initially and mine was over 25,000. He did not just rely solely on the C4A to make a diagnosis though. We tested our home with the ERMI and it was high for mold. Also, the doctor ran a number of other blood tests that Shoemaker recommends on his website: VEGF, MSH, MMP9, TGF beta-1, etc, plus the vision test and nasal MARCONS swab. They all pointed toward mold. So I would recommend running some or all of these additional tests and see which way they point - especially the home testing with ERMI, if you haven't already. I don't have any experience with the urine test, so I can't comment on that. I get the frustration with Shoemaker. He's seems to have a bit of tunnel vision on his topic and doesn't communicate very clearly, imho. It's been extremely helpful for us to have a sensible doctor who understands both Lyme and mold illness and can communicate clearly about both.

The Rifampin is important to treat the Bartonella, which could definitely be a source of the rages. Be forewarned, it can take years and often requires medicine AND herbals to fully irradiate it. Has she been tested for yeast overgrowth? It's a common problem in these kids and important to check if she has mood issues. Also, you might try eliminating food dyes from her diet to see if that helps. I believe orange Gatorade has Red 40 in it. Red 40 makes my son cranky and mean.

Another option would be to find an integrative doctor closer to home who can see her long term. This tends to be a marathon rather than a sprint, so it can be a good idea to have a doctor you can work with over the long haul to get her back to full health. Ideally you'd find an integrative M.D. who knows how to look for and treat a range of infections and immune systems issues that can be involved in PANDAS/PANS, and uses all the tools in the toolbox (e.g., antibiotics, vitamin/mineral supplements, herbs, homeopathy, IVIG if needed, etc). Also, you can and should report her vaccine reaction to VAERS (Vaccine Adverse Event Reporting System) because most likely her doctor will not. Flu mist is a live virus vaccine and definitely contra-indicated in PANDAS/PANS. I would stay away from all vaccines while she's trying to get well, as their entire purpose is to stimulate the immune system into creating antibodies.

Just saw this on Age of Autism and thought it could be helpful for PANDAS/PANS parents as well. They have 35 speakers lined up including Dr Kenneth Bock, Richard Deth, Dr Richard Frye, Dr Martha Herbert, Dr Elizabeth Mumper, Julie Matthews, Dr James Neubrander, Dr Nancy O'Hara, Dr Dan Rossignol, Dr Anju Usman and Dr Stephanie Seneff. Most of the topics covered will be relevant to this group, even if your child is not on the autism spectrum - such as methylation, the gut/Microbiome, detox, the immune system, special diets, and brain elasticity. It's free from January 10-18th. http://theautismintensive.com

I agree with Nicklemama - an LLMD is your best bet right now. We saw Dr K and he prescribed IVIG, but when we told him our local doctor had found signs of chronic viruses, he told us that had nothing to do with our son's situation. That turned out to be wrong. He does not look at any infections other than strep and mainly only uses two tools - IVIG and steroids. An experienced LLMD will look for many infections and issues and if they're integrative (as most are now), they'll be familiar with many different modes of treatment.

I'm sorry to see no one has answered. We have a great one on the SF Peninsula, but I imagine that's too far away.

It's possible your daughter has gestational Lyme. That was the case with our son who also was colicky and light/sound sensitive as a baby, and always anxious and impulsive to some degree. He didn't have his overnight onset into full-blown OCD (PANS) until just before he turned 9, but before that had "features of" a number of disorders including anxiety (dx at age 9), ADHD (dx at age 13), mood disorder/ODD, and sensory integration disorder (dx at 6). Have you had any health issues at all? I didn't realize I had Lyme until my son was diagnosed and I didn't get a positive blood test (Advanced Labs culture) until he was 13. It can be a tricky thing to diagnose. In any event, I would see a good pediatric Lyme-literate doctor to follow up on these test results.

"It's just very hard to pick apart whether this seems like pandas or just early onset ocd." I think in many kids (possibly all) there's no difference except the doctor's perspective. A "regular" doctor will look at symptoms and try to suppress or eliminate them, but an integrative or functional medicine doctor will look for the underlying causes, be it infection of any sort, toxicity, allergies, etc. I think it's safe to say that everything has a cause - regular doctors just don't look for it and label the symptoms "OCD" or "anxiety" or "bipolar." Here's a good article that explains the value of looking for the cause of a disorder, using autoimmune disease as an example: http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html

Our story is very similar to Nicklemama's and I agree with her recommendation. On top of most of the infections she listed, we were also dealing with mold, heavy metals and methylation issues. After 5 years working with integrative Lyme doctors, our ds15 is doing well and off antibiotics.

The minute your son starts worsening, call Dr. K and describe the changes. Keep detailed notes so you can convey exactly what's happening. It's one thing to tell him what you think will happen, but a completely different matter when it's actually happening and your son is back in crisis. I don't see how he could refuse to help at that point. Otherwise, I would look into an integrative/functional medicine doctor. We made the switch after two IVIGs did not bring our son back, and are so glad we did!

Good article if you're looking for natural ways to reduce inflammation. The article focuses on arthritis pain, but I think it's relevant for any type of inflammation. http://theheartysoul.com/dangers-of-nightshades/?utm_campaign=shareaholic&utm_medium=email_this&utm_source=email

I sent you a PM.

The hospital wouldn't do the testing themselves, they would send it out to a lab for Lyme and co-infections testing. Can you get a copy of the lab report? That should tell you who did the actual tests. Also, are you saying they tested for all the co-infections I listed?

Does she have an IEP? The law states that kids with IEP's cannot be barred from school based on vaccine status. Also, where are you in CA? If you're in the SF bay area I can PM you the names of doctors who may be willing to write the medical exemption. Also, if you're working with an LLMD, maybe they'd be willing to write the med exemption? Our integrative pediatrician was willing to write a medical exemption for our ds based on Lyme and PANS dx's, but didn't need to because he's past the 7th grade "checkpoint" and his personal beliefs exemption is grandfathered in.

Start hydrating pretty aggressively the day before and contine until he feels back to normal (if he has side effects). Good luck!