mama2alex

melmix makes a good point - there are a number of infections that could be contributing to your daughter's illness. I'll PM you the names of a couple of great doctors in the Bay Area. They will test/evaluate for all potential infections and will prescribe targeted abx and/or antivirals for anything they find. They will also look at allergies, vitamin/mineral deficiencies and other potential contributors.This is a much better path than trying a random antibiotic and waiting weeks/months to see if it helps. Bottom line, don't wait! I have never found a wonderful therapist in the Bay Area. We went to the OCD clinic in S. Florida a couple of years ago and it was well worth it.

We've been at this for almost 6 years and ds 14 originally tested pos for Bart right from the beginning. Over the years I've seen little streaks here and there, but they'd fade very quickly. A few months ago he developed several large streaks on his back, and two docs confirmed this was a Bart rash. We started up treatment for Bart again - Rifampin 600mg, BAR-1 and BAR-2, but the rash/streaks didn't budge. Just today I saw that the rash on his back had expanded quite a bit - maybe covering 1/4-1/3 of the area of his back. It looks frightening, but I'm taking it as a good sign because his mood swings are MUCH better since we started refocusing on the Bart. Did you ask her why she decided against Rifampin? I thought it was the abx of choice for Bartonella, but not 100% sure.

Oregon just defeated a bill similar to SB-277. Here's an article: http://www.statesmanjournal.com/story/news/2015/03/11/senator-drops-vaccine-mandate-bill/70152454/ Hopefully, we can do the same!

He should be tested AND evaluated for coinfections by an experienced LLMD. Coinfections are very common and can wreak just as much havoc as Borrelia. And the tests yield many false negatives.

The whitehouse.gov petition is important, but equally important is shutting down this proposed CA law. Because you can bet as soon as it passes, a similar law is coming to every other state in the near future. CA residents, please sign this petition to Governor Brown: http://www.gopetition.com/petitions/prohibit-mandatory-vaccinations-in-california.html And join Californians for Parental Rights and Choice FB page to stay updated and get involved as much or as little as your time allows.

A bill has been proposed in CA to eliminate the personal belief and religious exemption for vaccines (SB277). If you live in CA and feel it's important that parents maintain the right to refuse or choose the timing of vaccines and other medical procedures/medicines for their children, please join the Facebook group "Californians for Parental Rights and Choice." Here's a description: "We are a grassroots group of parents from California who believe it is in our best interest as a society to maintain freedom of choice for what we put into our children’s bodies. We are concerned about the bill (sb277) being proposed to eliminate the religious and personal belief exemption from vaccines and we are ready to fight every step of the way. We gather together to join forces against a government that has no right to take away our parental freedom to protect our children and make decisions in our children’s best interest. We are against mandatory vaccines." They currently have over 3,300 members and are organizing calls and letters to CA legislators. There will also be a protest in Sacramento at some point. Thanks!

We use Takesumi Supreme - one scoop once or twice a day. It's supposed to bind various toxins, including heavy metals. Our integrative doc has all his patients take it. Do you have metal fillings? It's very important to remove any metal fillings before any type of chelation because they are about 50% mercury. I had mercury poisoning years ago, and did chelation with DMPS, so just wanted to mention this.

Have you tried an integrative doctor? They usually are well versed in chronic infections/illness and how to support the immune system.

The best way is to see a Lyme-literate MD who will know ALL the infections to look for, what symptoms map to what infections, what lab tests are most accurate, and how to treat. These kids often have multiple infections, including bacterial, viral, fungal, and parasites. A pediatrician or other "mainstream" doctor won't be able to sort this all out properly. At this point, pretty much any good Lyme doctor who treats children has seen multiple PANS/PANDAS cases.

Glad to hear he's doing better! If you are dealing with Lyme, your best bet is to work with a Lyme-literate MD. They know what co-infections to look for (Lyme rarely travels alone) and how best to treat. Also, educate yourself on Lyme - good resources are the ILADS website www.ilads.org, a book called "Cure Unknown" by Pamela Weintraub, and the many parents on this forum who are dealing with Lyme and co-infections. It's a tricky disease.

The school difficulty/anxiety/refusal is an incredibly stressful thing to deal with. We were pretty much where you are with it, but in 3rd-6th grade. One thing I realized over time is that there is a physiological component (inflammation of the brain) to it and a psychological component (the brain is literally stuck in the thoughts and behaviors). I think that's why it often looks or just feels like willfulness, laziness, or manipulation, even sometimes to parents who "know better." At some point, treating infections, changing diet, etc reduces the inflammation to the point where the thoughts and behaviors are reduced and they can attend school - well for some. In our case, there was a point at which I realized he should be able to get to school - because all his other symptoms had been greatly reduced - but he was just stuck. At that point we started considering the intensive program at Rothman and eventually went out there (we're in CA) in summer 2013. It was a lot of work both during and after, but the tools and information we learned were enough that by the second month of 7th grade, he was getting into school regularly with only an occasional hiccup. Only you as the parent can judge if/when she's reached that point, but if she does, I'd highly recommend taking her to Rothman for 3 weeks. We saw Dr. Rahman and my ds hated the whole thing while he was there, but later referred to Dr. Rahman as a "genius" and having "saved his life." Also, Rothman is great because they accept and "get" PANDAS/PANS, so you can talk about it openly without having to explain or get strange looks. Another thing to consider, if you haven't already, is the possibility of mold as part of the problem. If she's not continuing to recover with Lyme/PANDAS treatment, this could be a culprit. Indoor mold is pretty common and these kids with immune/detox issues are often affected by it. And if you've got untreated mold issues, you can't recover from Lyme.

I put the really nasty tasting drops in an ounce or two of orange juice, and this has worked wonders. I also let him sip a bit of juice right after the drops that have to go directly in his mouth.

Yes, if the skin test shows a nut allergy, it's a good idea to remove them from his diet completely. Even if you don't see overt signs of allergy, they are stressing his immune system and you want to minimize that. Did the doctor you saw do any blood tests for underlying infections - strep, mycoplasma, Lyme, etc? It's important to find out if he has any ongoing, chronic infections. If he does and they aren't treated, this could all come back later and be much more severe. That's what happened to us. At age 5 ds had sudden onset of PANS symptoms with pneumonia, but it went undiagnosed and the symptoms faded away in 6 weeks. Then at age 8 it all came back much worse, we discovered PANS, Lyme, Bartonella and other infections, and it took us several years to deal with it and get him stable again.

Thanks for posting this update. So glad to hear he's improving! Hoping 2015 will be a year of healing for him.

I'm sorry this has happened to your child, but you're are in the right place. In most children there are underlying infections that cause the immune system to go haywire, and the trigger infection - in your case the flu - is just the tip of the iceberg. For example, our son developed PANS after a bout with pneumonia 5 1/2 years ago, but we had to uncover and treat Lyme, Bartonella, Babesia, and chronic viruses in order to get him back. We have also had to treat for mold toxicity, change his diet and support his body with vitamin/mineral supplements and glutathione. We are still treating and he is still improving, inch by inch, but we believe he has congenital Lyme (caught it from me in utero) and has had health/behavior issues since birth. My advice would be to test for underlying infections and immune function asap and educate yourself on topics such as mold toxicity, methylation and special diets. It will take time, but I'm sorry to say that in most cases, this is a marathon not a sprint. Some infections to test for are strep (it can be asymptomatic), Lyme, Bartonella, Babesia, mycoplasma, Epstein Barr, and HHV-6. Others can chime in with other infections to test for, but if you find the right doctor, they will know what to look for and the best labs to use. Pediatric Lyme doctors are seeing PANDAS/PANS frequently, so that can be a good place to start for testing. The one case I know of where a child has recovered completely in a relatively short time is our family friend's son. He developed intrusive thoughts shortly after a strep infection at age 8 and they called us immediately when their pediatrician mentioned PANDAS because we had been dealing with it for two years. I told them to go straight to our Lyme doctor and he tested their son for a number of infections. He had Lyme, Bartonella and Babesia. The doctor put him on a gluten/dairy-free diet and treated him with antibiotics and herbs for about a year. He is well and never relapsed. I think the fact that he'd only contracted Lyme a year prior (he had a known tick bite but they'd never had him tested) and they jumped on it so quickly when he developed PANS accounts for his quick recovery. Ibuprofen and other Nsaids are stressful on the gut and liver, so I would only use them as needed. If they've helped, it tells you that inflammation is causing the OCD and behavior, but they are only symptom treatment and come at a cost. I would also stay away from Tylenol completely as it depletes glutathione, which is crucial for detoxing and immune function and often already low in these kids.

I had constant head pain for a year and a half before I figured out it was food allergies. Eliminating gluten, and later dairy, did the trick. I know everyone is different, but if you haven't already tried eliminating these foods, it might be worth a try. Food allergies can definitely cause headaches. Soy and corn are also very common allergens. Also, I recently found out that an "icepick" headache (stabbing pains) is often caused by Bartonella. If its that type of pain, you might want to consider looking into Bartonella.

I'm so sorry to hear this! Have you heard anything about the Cheney Clinic in N. Carolina? They treat only CFS/ME patients and have been around for a very long time. http://www.cheneyclinic.com/ I'm reading a book about the suspected role of XMRV, a retro-virus, in CFS/ME and the scientific investigation into that. Dr. Cheney played a significant role in the story, as a CFS pioneer, researcher and clinician. I also saw him mentioned on Scott Forsgren's blog - The Better Health Guy. http://www.betterhealthguy.com/panama-stem-cell-therapy I hope you have people willing to help you research. Its so tough when you are exhausted and brain-fogged! Praying you get some answers soon - don't give up!!

Hi, I'm so sorry you are going through this. Our son had rages until we started treating him for Lyme and Bartonella. We had to hide our knives and fireplace tools because he threatened me and himself with them. I know it's heartbreaking. When do you get your Lyme and Mycoplasma test results back? Did you test through Igenex? Did you run a Baronella test? Although the lab test has a relatively high rate of false negatives, Bartonella is often a culprit when kids are raging. Make sure you get a copy of your test results and run them by the forum. Many doctors don't know how to read the results properly, especially if there are INDs (indeterminate results) on the test. Also, many of these kids have paradoxical reactions to psych meds (worsening), so be on the alert for that with the Risperdol.

We've definitely noticed that aspartame, MSG and red dye 40, as well as too much sugar, have a very noticeable negative affect on our son's mood and behavior. There are probably other things we're not yet aware of.

I was just documenting how it was for me so it is the case personally. I totally get how you feel! Gluten and dairy cause me terrible headaches and it took me over a year to originally figure that out. Once I knew though, I "cheated" fairly often and just dealt with the headaches because I craved them so much (especially gluten!). But keep at it and do take advantage of the replacement foods that are out there. I found a local gluten-free deli and can get wonderful sandwiches and muffins there when I'm really craving something with carbs. Whole foods also has wonderful GF pasta, cookies, pies, etc. They give gluten-free tours of their store to help you learn about what they have available. But as time goes by, I need these less and less. Keep trying!

Glad you got an answer!

Have they checked his EBV titers? Viruses are often a part of the bigger picture. There are things you can give him that might help if EBV is flaring. Also, how did you rule out mold. We thought we'd ruled it out early on, but it turns out our doctor had only looked for mold allergies.

Have you had him evaluated by a Lyme doctor? Dizziness, fatigue and headaches are all classic Lyme & co symptoms.

Sorry you are going through this! First off, not "returning to baseline" does not rule out PANS. It might exclude you from a research study, but in the real world some wax and wane, and other stay the same until they're properly treated. Our son didn't get better until we identified the infections and started treating them. Second of all, as pr40 mentioned, her history definitely points to autoimmunity and infections. An experienced PANS or Lyme doc would recognize this. Our son was also inflexible and sensitive from birth. It turns out he has congenital Lyme. If she's afraid of needles, you could start by seeing a Lyme doc yourself and doing any blood tests they suggest. If you have Lyme, you probably have your answer right there, given that she's had issues all her life and developed the OCD, etc so early. Even if you don't have Lyme, I'd keep researching the infectious/autoimmune connection. Keep asking questions here - there are a lot of folks who've been through a lot and will help you if they can. Oh, one other thing, a lot of PANS kids are very sensitive to psych meds and sometimes have paradoxical reactions, so step carefully there. If you're going to try it, start low and slow and watch for any behavior changes.

My DS and I both repeatedly tested negative for Lyme on the Western Blot, even using Igenex. We both had positive Advanced Lab cultures in Spring/Summer 2013. Eva Sapi, who's a well respected Lyme researcher, did a study using seropositive Lyme patients and healthy controls to determine the accuracy of the culture. They had no false positives and I believe a 6% rate of false negatives. You can find that study on the Internet pretty easily. The culture looks for all strains of Borrelia, not just Burgdorferi, and it can't tell you which strain you have. But I think this is good because more than one strain can cause illness. I'm with Philamom - I'd consider this a confirmation of Lyme and move forward with a Lyme-literate doctor.