mama2alex

I think strep should always be treated with abx, but especially if you've already seen an autoimmune reaction to it (tics and sensory issues). Definitely give them a good quality probiotic 2-3 hours away from the antibiotics to protect the gut. I will respectfully disagree with quannie and ibcdbwc and say that when the body's immune system goes awry, as with PANDAS/PANS, I believe there's always an underlying cause. From years of dealing with this, talking to doctors and other parents, and reading reading reading, I think the most common root causes are Lyme and it's coinfections such as Bartonella and Babesia; chronic viruses such as HHV6, Epstein Barr, and coxsackies; mold toxicity, methylation issues, vaccine reactions, leaky gut, food/additive/dye allergies, and mycoplasma. You can read more about all of those on this forum. A combination of some or all of these issues wear the immune system down and cause it to become dysfunctional. I think if you can determine what the underlying causes are (usually it's more than one) and treat them, you can prevent this from escalating. And you might find answers for yourself in the process.

School refusal/separation anxiety was one of our our biggest issue right from onset, so I totally get your frustration. Once we started seeing improvement in many of ds's issues, it became clear that we would need to go beyond infection treatment to deal with the school refusal. The behavior had become "stuck." We went to the Rothman Center in South Florida and did the three-week intensive OCD clinic (using CBT and ERP). We worked with an absolutely amazing therapist there and saw miraculous improvement in school refusal after returning home, and when it reared it's head in the future, we had tools to deal with it. I would recommend looking into this - a number of families on this forum have taken their kids and can share their experiences with you if you ask. It could very well get him over the hump of going back to school regularly, and solve your practical problem while you continue to work on the infections. Also, I believe this clinic may be branching out to other locations and they may be flexible on timing, such as doing two weeks to start, if you can't get 3 weeks off work.

I can't advise you on the tonsils, but I agree with James_D that you should explore the possibility of heavy metal (mercury) toxicity, considering the dental work. I don't think PANDAS has really been associated with fatigue and body aches, but mercury sure has. Also, definitely look into Babesia and Bartonella, if you haven't already. With all your symptoms, it's unlikely to come down to just one infection or issue - it's more likely a number of infections and other issues like heavy metals. Hopefully, someone else can help with the tonsil decision - we don't have any experience with that.

Just wanted to make sure everyone was aware of this possibility. http://www.medscape.com/viewarticle/862796?nlid=104481_3901&src=wnl_newsalrt_160503_MSCPEDIT&uac=140570DN&impID=1083607&faf=1

Zoloft comes in a liquid form for kids, so you could start very low and work up very gradually.

With the combo of elevated ASO, anxiety, depression and physical/neuro symptoms, it sounds like it could be both PANDAS and Lyme. A negative Igenex test doesn't rule out Lyme - my son and I have never been pos on Igenex, but we both cultured positive. Did your doctor check for co-infections? These can play a huge role in the psychiatric/neuro symptoms. Here's a questionnaire that Dr Horowitz has posted online which might help you get a better sense of whether this involves Lyme and co-infections or what he call MSIDS. http://www.cangetbetter.com/symptom-list

Three weeks. We did get some insurance coverage - you can figure this out in advance. Not sure about age limits, but I doubt they would turn away a 21 yo. Just call and ask - the receptionists are very helpful.

Hi and welcome to the group! I'll give you my take on your questions and I'm sure others will chime in with great ideas. Diet - you can do an elimination diet to see what he's reacting to, but this is very hard, especially with kids. There was a mom here a long time ago who's daughter had a very severe case and they basically brought her back with a very strict diet. Her forum name was pixiesmommy I believe. Otherwise you could eliminate the most common allergens one at a time and see if he improves - gluten, casein, corn, soy, sugar. Vaccines - their are a number of kids here who either had their initial sudden onset right after a vaccine or relapsed after one. If he's already had a reaction in the past, I'd hold off at least until he's well. You can get a personal belief, religious or medical exemption, depending on what state you live in. NVIC lists them by state on their website. He may already have immunity from the first vaccine - you can check titers through a blood test. Also, if you search this forum for "vaccines" you'll find many conversations about this topic. As for "best stuff" you can start with the pinned threads at the top of the list - "helpful threads for PANDAS" and "helpful threads for Lyme and associated infections." Even though he had an obvious reaction to strep, don't ignore the Lyme info assuming it doesn't apply. Many parents have found Lyme and co-infections to be an underlying cause (requiring different medicines than strep) even with an obvious strep trigger. Other than that, read read read and follow your intuition - search for more info on any topic that catches your eye. Every kid is a little bit different.

Rothman is fabulous, and may be the better option if she can only focus for an hour or so a day. You get weekends off too. There is usually a wait, so I'd recommend calling them now to start investigating. Ask if anyone uses DBT and explain what's going on. They'll give you an honest assessment of whether they think they can help. We couldn't find anyone locally who could help us with school refusal, but Dr Rahman worked miracles with my son.

I found a great article this morning that discusses the microbiome and it's connection to brain related disorders such as autism. Great explanations of GcMAF and nagalase as well for anyone who's interested. https://riordanclinic.org/2013/01/the-super-probiotic/

Hi AlyMom, Welcome to the forum! I can weigh in on a few of the tests you asked about. Both my son and I have Lyme and co-infections (his is congenital) and we've done a lot of different tests between us. Igenex - We had similar results to your son, with very few reactive bands, and then only IND. I believe 23-25 and 39 are both Borrelia Burgdorferi specific, so they should not be dismissed. Culture - We both went on to do the Advanced Labs culture about 3 years ago, because I really wanted proof positive. We were both positive on the culture. By the way, our doctor wanted us off abx for at least 8 weeks, and my son did the test toward the end of a six month break form abx. This test doesn't really yield false negative, as far as I know, but it is not species specific. Urine provocation - I had a very bad experience with this, and I still haven't fully recovered. I was having low level symptoms and the doctors thought I had Lyme, but we really wanted a definitive test result. I was given several abx to take for five days, but developed debilitating flu-like symptoms and only made it three days. After that, I developed severe roving joint pain, more severe fatigue, more neck and back pain, and brain fog. I've been trying to dig my way out of this for 3 1/2 years. So personally, I view this approach as risky. Muscle testing - We've done variations of this over the years, and I think it can yield important information, but my experience is that it isn't always 100% reliable. Co-infection testing - You didn't mention this, but it's extremely important to know which, if any, coinfections you're dealing with, as they require different medications to treat. Bartonella in particular seems to be a common culprit in these kids with PANS, but the tests for this aren't always reliable. A good LLMD can usually pinpoint co-infections through clinical diagnosis and/or provocation with herbals. Regarding "no known history of tick bite," some families on this forum have discovered they're dealing with congenital Lyme. If you have any health problems or symptoms whatsoever - even if they don't seem Lyme-like to you - I would explore this. Of course, many people with Lyme never see a tick or a rash, so the absence of these doesn't mean much. One last thought - you mentioned he's 99% back to baseline, so you might consider working with an LLMD who will just use herbals to treat infections and focus on building up the immune system, healing the gut, etc. I think when you're very sick, abx make sense, but otherwise I think it's better to be conservative. Some on this forum have done herbal protocols for Lyme and co-infections with great success, so there is a wealth of info in old threads.

As always, LLM gave you excellent information and advice. I would just add, that if your contractor did not seal off the bathroom with plastic sheeting before pulling up the carpet, spores have probably gone outside of the bathroom, and he is not the right person to do the remediation. We recently had a water leak in our brand new home and once the builder learned about our mold sensitivity, they called in a professional remediation company (we're under a warranty). They sealed off the area in the garage and had some kind of negative pressure system pumping air to the outside before he ever cut into the drywall. The guy put on a hazmat suit to go in there and as LLM described, plastic wrapped the moldy drywall he cut out before taking it out to his van. They've had it sealed off and dehumidifying for weeks to make sure its all dried out and no more mold grows. These extreme measures are appropriate when dealing with mold.

Here is LymeDisease.org's rebuttal of this study: Chronic Lyme European PLEASE Trial - You Know It's Spin When Treatment "Success" is Called "Failure" https://www.lymedisease.org/lymepolicywonk-lyme-european-please-trial-you-know-its-spin-when-treatment-success-is-called-failure/ "Please" don't believe the IDSA propaganda without doing a lot of research.

Thanks for posting! I've been following this since Robert DeNiro announced it would screen at Tribeca Film Festival. Highly recommend seeing this film if you want to learn more about why parents are claiming a link between vaccines and autism. They'll be listing screenings across the country here: http://www.vaxxedthemovie.com/ Also, here's a great explanation from the producer of Vaxxed as to why Dr. Andrew Wakefield is not an evil huckster, just trying to make a buck: https://www.facebook.com/del.bigtree/posts/10153347782130964?fref=nf

I'm so sorry to hear you're feeling this way. As MomWithOCDSon said so well, it can and will get better. It sounds like treating just strep with just one antibiotic isn't working fully, so maybe it's time to cast a wider net in terms of testing for infections, as well as looking at other issues such as methylation, food allergies, heavy metals, mold, parasites, etc. Were you able to get in to see Dr. O or Dr. M, as LLM suggested? I'm sure they could help you figure out what to do next. Hang in there - it will get better!

The Chronic Lyme Disease Summit http://chroniclymediseasesummit.com/ is a free online conference starting today. There are many great speakers and topics lined up, and I encourage anyone still looking for answers, even if you've ruled out Lyme or don't think it's a possibility, to check it out. Much of it will be relevant to PANDAS/PANS, whether or not Lyme is involved. Speakers include Dr. Horowitz, Lee Cowden, Scott Forsgren (Better Health Guy), Kenneth Stoller, and Joseph Mercola, just to name a few. Topics include mitochondrial dysfunction, brain conditions, stress and emotional trauma, treating anxiety and panic with tryptophan and GABA, energy medicine, Chinese medicine, trigeminal neuralgia, IV vitamin C, rife, infrared technology, sugar, mold, nutrition and detox, gut microbiome, biofilms, GAPS diet, ketogenic diet, grains = inflammation, cancer, heavy metals and more. They have several speakers each day and you have 24 hours to watch their talks for free.

Bartonella can definitely cause OCD. Here's a great article that SFmom posted last Fall: http://www.townsendletter.com/July2015/bartonellosis0715.html

Toxic mold can cause nose bleeds as well. Have you tested her and/or your home?

I haven't had any thyroid problems myself, but I would highly recommend you read the book Iodine: Why You Need It, Why You Can't Live Without It by Dr Brownstein before you start a prescription from an allopathic doctor. The book explains in detail the impact of iodine deficiency on thyroid function/health and why most Americans are deficient. It's an easy, quick read.

This just popped up on my FB feed. IMHO, moms of PANDAS/PANS kids always need to take a closer look at their own health, especially if your child has had any issues since early on. https://www.lymedisease.org/423/

I don't remember, but pretty sure it was over $100. For us it was worth it not to have the third person in our family fall to Lyme. You can give them a quick call - they're very helpful over the phone.

You shouldn't leave this to chance. When my husband had a tick attached a few years ago, we sent it to Igenex for testing. In the meantime, our son's LLMD gave my husband a month of Doxycyclene. When the testing came back, the tick did carry Lyme, but no coinfections, so the Doxy was enough and they gave him an additional month of it just to be sure. A bullseye rash will tell you if you have Lyme, but doesn't tell you anything about coinfections. Also, lack of the rash doesn't mean no Lyme. If you wait to see if you get sick, by that time you'll probably face a huge battle to regain your health. Better to just treat the bite while figuring out exactly what the tick was carrying.

The air hunger is a BIG red flag for Babesia, which is a coinfection of Lyme. Your best bet right now is to find a Lyme-literate doctor and work with them on testing and treatment options. Doing a full Igenex panel is great, but those tests depend on an immune system response, so they're not always accurate - especially when the person's immune system is worn down. A Lyme-literate doctor will be able to do a more nuanced evaluation and use other tests, if necessary, to figure out what the infections are and what treatments are needed. Hang in there - you will find your way!

Is ASC an acronym for autism? In the U.S. we refer to it as ASD (autism spectrum disorder), so that may be why no one has replied. I know there are at least a few parents on this forum dealing with full-blown autism, but anyone familiar with autism knows that PANDAS/PANS is related in some way. Many of the biomed treatments for autism are helpful for PANDAS/PANS and visa versa - diet, supplementation, chelation, addressing methylation, and IVIG come immediately to mind.

Our Lyme doc says TGF-beta1 can indicate Lyme and/or mold. If I were you, I'd do the ERMI test and see if there are mold toxins in your home. If your LLMD decides to start treating for mold, you'll need to know this anyway, because you can't treat while you're still living in a moldy environment. And in the meantime, the ERMI will help you get a better idea of exposure. C4A can also be a good guide as well as the Real Time Labs test. Unfortunately, like Lyme testing, mold testing seems to be somewhat unreliable and only a guide, not a definitive answer. Here's a recent thread on this subject that might be helpful: http://latitudes.org/forums/index.php?showtopic=24195&hl=mycotoxin#entry182986