jph

My PANDAS/PANS (not yet sure what/which, tho dr. thinks PANS) son's immunoglobulin testing blood tests came back. Everything was fine except that his strep titers are very low, indicating (via the nurse who gave me the results) that his body is unprotected from strep. Dr. recs giving him the PCV 13 vaccine (13 Streptococcus pneumoniae strains) then test titers in a few weeks to see if it works. Questions/thoughts: 1. Why are strep antiobodies absent? 2. If the problem w/PANDAS is that he's not making antibodies to strep when coming in contact w/it naturally, how is the body going to suddenly do it right with the vaccine? 3. My son has never had a strep throat that I'm aware of, and he's never had a positive strep test (we have done swabs and cultures in our search for answers throughout the years). His flares over three years have never appeared to correlate with exposure to strep. I'm not sure he has any issue with strep, so I'm very concerned with this crap-shoot approach. Your thoughts, please?!

There is something called theallergykit.com that is based on naet, but you buy the kit and do it at home. There's a money back refund, though it isn't expensive to begin with (coming from a mom who paid $95/tx in the office for something similar until I found this). Anyway, there's a PANDAS vial that you can use after completing the initial 7 or so vials. I did the vials on my son, and then bought the PANDAS vial. It didn't do anything for him, but then again I don't think strep is his trigger. The initial vials were highly effective though.

My son is having a horrid period of tics right now. His tics turn into/cause/... full body seizing-like activity that are now sucking the breath out of his lungs. They've never been this bad and I'm quite terrified. WWYD? Is this normal?

I *think* the implication of calling anything an allergy is that if the body is reacting in a way that creates an imbalance to a substance/thought/allergen/whatever, that by treating them with that substance/thought/allergen/whatever, a neutral reaction can be attained. It sounds really out there, but I'm willing to try it. My son has tics and during the one where he gets *really* angry and has what looks like an angry seizure/tic, he yells, uncontrollably, "I hate girls!" Girls, girly colors, girly things, his sister... they all trigger this tic. It's a really, really tough and odd one to live with. If he's "allergic" to girls, etc- well there is an allergy treatment for "people".

On my journey of trying to figure out what exactly is wrong with, and help, my 8 yo ds with many atypical neuro activities, I found theallergykit.com. I have no affiliation with them. I've been looking at their web page for a few days, and considering how it might help. We've had significant help using treatments like AAT (kind of like NAET) for some things. So as I was filling my cart today, I see there is a vial for strep/Pandas and another for Lyme. It can't hurt, and it's pretty inexpensive! I thought I'd share here.

Thanks smartyjones. Great advise about not needing to carry it all alone. It's so hard to let go, to just survive and not let the "other" things stress me out. I feel like I've tried so many different holistic routes.. that I'm wanting to check on infections now. (Yes, in the same day that I was concerned about which route to take, I've decide I need to at least find out what's triggering him.) So, we will see Dr. K. To answer your questions, 1. I have zero idea what the infection(s) are. Where do I even start to look?? 2. I have no idea what immune modulating techniques are. A google search did nothing for me. Can you explain it a bit? jph -- yes, i know the out of control breakdown all too well. a while ago, i read a book that had some advice i really liked -- get a notebook and on the right side, write down all your goals to accomplish for the day -- the real, live things you can reasonably accomplish and that is your to do list. on the left side, write down the things you need 'help' with -- be it from what ever you see as your higher power or source or whatever -- that is what you need help with. go about your day crossing off what you can and will get done from the right side, leave the others -- you are asking for help with them. (i did this a few months ago with an 'answer' for ds's school situation and within a few days, a 'spot' at the charter school i had been hoping for came available for him and it's been a great situation the past few months. -- i'm not explaining it so eloquently -- if you're interested, i can see if i can find the book to reference. in our journey - we have done some of the techniques you are discussing. first, i am a strong believer in getting at the infections. we've done gf/cf with good times and exacerbations while strictly on the diet. he is not currently on it. i think he needed it at the time of onset b/c his system was so askew, but i don't think it was a key in and of itself for his healing. we've done cranial sacral therapy -- i think we saw some benefits but not a key -- something i may like to go back to. we currently see an integrative MD who uses homeopathy to treat infection -- and he discovered many for ds -- i think this has been key. we recently added another MD - kind of sort of like a DAN who is working on balancing some aspects for ds -- his copper/zinc is out of whack -- i think this has also been important. so is your current decision between the chiro and dr K? i think my first questions are 1 - what and why are you thinking infections and 2 - are you feeling you need to ferret out various infections and specifically treat or are you interested in immune modulating techniques.

Are you saying it might be more beneficial to see a Lyme specialist first, bc they can order all the tests I'd want? Do you have any suggestions for other tests I'd want to have done?

Thank you for sharing how your anger comes on with your daughter! It's all new to me as far as understanding what's actually going on. I appreciate having others' words of wisdom. What other things (besides testing for strep titers and myco p titers) should I put on my list? Anyone?

Today has been a terrible day. Tics are 10/10 in intensity and frequency and I'm not sure I can handle one more tic. DS and I did make a few discoveries in the past 24 hours. #1 *Thoughts* make him tic. No joke at all, when a "girly" thought (pink, for example) of a thought of a girl crosses his mind, he tics, and it's a nasty one- his eyes roll to one side, his face grimaces up, his neck turns to the side, his fists ball up, his shoulders shrug, and he loudly whispers, "I hate girls!" Over and over and over. Like hiccups or sneezes, they come in bunches. #2 He does NOT tic while playing video games that he likes. ???!!! I can even say "girly" words to him while he plays, and he's aware I am saying them, but he said the need to tic is so tiny that he doesn't even need to do it. When he's not playing video games and I say a "girly" word, it sets him off. I know he doesn't mean to be hurtful, but it is. I am a girl; his sister is a girl. We set him off. He loves us, of course, and he has many girl friends. We are all triggers. We can't pinpoint any other triggers at this time. We have also been unable to identify any specific triggers for other tics in the past. The anger seems to be a tic as well. Has anyone ever heard of this? It seriously comes and goes like a sneeze. It can turn on and off in a second, though generally when it comes, it stays for a bout of time, but not always. If there has been an infection for over 2 years causing the tics, what is the likelihood that abx will help? I thought I read somewhere that it needs to be caught early for them to help. Abx did have an immediate effect on his ocd and rageful behavior about 6 weeks after the initial onset, but they were given for something unrelated to this and only given for the standard 10 days. Some things immediately disappeared while others lingered and eventually fizzled away over a few months' time, except the tics, which have only gotten worse over time. A year or so later, he tried another 10 day course of abx to see if it would help anything, but nothing changed. He actually doesn't seem to be affected by a clean diet. I only said that bc it seems that many have been helped by cleaning up their diet. I wonder what he'd be like if he didn't, or if he was vaccinated. I shudder to imagine. There was a point early on when I thought he had become autistic. I think he has a very sensitive system. I will keep the appt with Dr. K, especially bc things are so out of control today. A few days ago I would have said we could live like this, but we cannot now. It's a whopping $500 out of pocket to see him bc we have a sky-high deductible, but I'm guessing I won't be the only one spending my life savings to help my child if needed! I did email him to see if there are tests we can do before we see him just to get the ball moving. I spoke on the phone today with the chiropractor I mentioned in my first post. He's an amazing guy, a Sherlock Holmes of healing. He asked a ton of questions and gave me some things to try based on my answers (a juicing recipe and GSE) and I'm to call him in a few days. One thing that really stuck with me was something along the lines of doing what medical things might need to be done (abx, for instance) and detoxing later. It's so important to me to keep his system clean. I guess I might be meant to be challenged by this one. I have no idea what medical issue is causing it. I don't think it's strep bc a few times when he's had a flare up he had throat swabs and bloodwork done (different times) that did not show strep. I know he did have a snotty nose for 2 years prior to and along with his acute onset of rage/anger/ocd/sensory/tics- so perhaps there is/was a chronic infection in his sinuses or somewhere... And as a side note, the snotty nose cleared up once we discovered he was allergic to carpet (thanks to a quantum healer for that information!) and had him treated for it. The clear up was about 6-7 months after onset of what I think is PANS. Thank God we homeschool bc I can't even imagine what the world would be like for him if he went to school. I haven't answered questions in any particular order, but I truly appreciate all of your responses. It is somehow helpful to read your stories and hear what you've done, and where you are now. I would give anything to have someone who understands this better than me come sit in my living room right now!

I'm quite sure ds, 8, has PANS. Though he's never had a flare as nasty as the first (acute onset), he does cycle in terms of moods, he's had tics for 2+ years since it started, and he presents right now and for a while now with what appears to be Tourette's. I have several options I'm weighting right now about where to start, and I would desperately love those with experience to tell me what you think. First, what I've done for the past 2+ years: Alternative allergy treatment center with many food sensitivities being treated (no environmental allergies came up on the tests)- but none of this has helped with his tics/Tourette's/moods at all. Saw a world-renowned MD who has a holistic practice; he recommended a ton of probiotic supplements, which we did for one month with no difference. My ds has always eaten a relatively clean diet with mostly organic foods and very little dyes, hfcs, sugars, etc. Now what? I'm considering a few things: Take him to a traditional osteopath who believes he can effectively treat him using hands-on therapy. I have gone to this doc myself for physical ailments so have had the chance to talk with him. He treats everything from ear infections to cancer successfully the same way: hands-on traditional osteopathy. I *want* to believe this will work bc it's the least invasive. Has anyone had success with this? Take him to a highly recommended chiropractor who does body scans with some machine that supposedly shows where the body is lacking in functionality/nutrition/whatever else. Chiropractic treatment is used as well as herbs and homeopathy, in addition to follow-up scans. (Ds has seen a chiro regularly during his lifetime, so chiro itself would not be new to him.) I actually have an appt with the famous Dr. K in Chicagoland in about 2 weeks but I am on the fence about following through with the appt as I realize the protocol if he does have PANS or some variation is long term abx use and/or IVIG- which sounds incredibly scary to me with seemingly all these other natural tx out there... And he has not had a true psychotic episode except when this all began... I would not hesitate to go this route if it was out of control... but hesitate when it's "just" Tourette's. As a mother I am at my moment of having another breakdown. This all feels so completely out of control. Thank you for any insights you're able to offer.

I live an hour from Dr. K and just set up an appt with him for early next month. I'm pretty sure my 8 yo has PANS but not PANDAS as I do not think it is strep related, since he has been around strep many times since his first acute onset and not reacted. I read somewhere on these boards that Dr. K is very good with PANDAS but doesn't dig for other triggers. Obviously location is easy but I would travel anywhere to see the dr who would be *best* for PITANDS/PANS. Suggestions/thoughts? Thanks!

About 6 weeks after the sudden onset of symptoms (ocd, rage, self-harming behavior), ds was given a course of abx for an (unrelated?) sinus infection. The abx caused some of the symptoms to disappear *immediately*. They never came back in full force, but it took many months for the ocd to fade away, and he started doing these "wierd" things. For a while I thought it was sensory things; I was unfamiliar at all with tics/Tourette's. These "wierd" things stayed for the next several years, mostly on, sometimes off, changing in intensity, frequency and what they were. Only this year did someone in my family suggest it might be tics or Tourette's, and when I started looking into them, I realized that's exactly what it is. I'm in the Chicagoland area. I have seen on here that Dr. Miroslav Kovacevic is nearby, but I'm hesitant to visit as it looks like this dr. is quick to suggest IVIG. Does anyone have experience with this dr.? It's not that I'm against IVIG but I feel like we should start with something less invasive first. Thank you for your responses! It makes a world of difference to not feel alone in the world with this!

Two years and six weeks ago my ds (now 8) had a sudden onset of rage/anger/ocd/sensory things following a fever which have developed into what I believe is now Tourette's. I'm not sure if it was PANDAS or PITANDS but believe it was one or the other. If this whole thing began from infection, am I completely off base thinking it can be cured with nutrition? For the past two years I've been exploring allergy avenues/gut issues but have had zero results, though several drs/health care providers still tell me that treating food sensitivities will be the answer. What avenue do I begin to take if there is in fact an infection still causing these issues? Thank you.