GraceUnderPressure

My DH & I have some more questions! #1: Can you all tell us if Dr. Cunningham's tests are entirely focused on strep acquired autoimmunity or can they also help determine autoimmunity if it was induced by other microbes? #2: Also, is it correct that Zoloft would be a first line of treatment even if a child is positively diagnosed with PANDAS? Is it true that most PANDAS articles and protocols recommend that as the first line of treatment before moving on to other strategies? Is it following Swedo's or any of the PANDAS dr's protocol to only try immunotherapy if there is a positive diagnosis AND the Zoloft didn't work? I found a PubMed article that showed SSRI's can reduce inflammation & have a positive effect on the immune system, but I am wondering if this is directly due to the the drugs themselves or actually because of serotonin's effects on the immune system? I am still concerned, among other things, that a drug which chronically increases serotonin in the synapses will trigger the feedback response that tells the endocrine system to produce less at a time when the body needs more - potentially improving the problem in the short term while worsening it in the long term. ~Grace

NMom, I mentioned that I was wondering about the possibility of PANDAS as I was discussing my ds's history & issues with him. He completely ignored it & went on to ask me some other questions. So I do not know how he responds to patients who are already diagnosed & seeking abx, but it does not appear to be something he is interested in exploring for himself at this point in time. It looks like we are either going to Louisiana or San Antonio for help. How bizarre is it that Houston has one of the best medical centers in the country & we can't get help here? ~Grace

Emerson, Add me to your list of very impressed admirers! Just wanted to add - any doctor you go to is legally supposed to provide you with a copy of labwork you have done if you request it (well, you'll probably have to have your mom request it). Ideally, try to have them make you a copy before you leave the office - most of them will do it. If they say they'll mail you a copy, ask them how long & then keep on them for it. But frankly, any doctor's office that is reluctant or unwilling to give you your own info is probably an office you would want to avoid anyway! ~Grace

Melanie, which did you do - the EEG or sleep study or both?

Now that we are working on lining up a PANDAS dr for my 18yo ds with Tourette's, I am trying to decide whether to cancel our appt. with the neurologist for an EEG in 2 wks. Is it likely to provide us with any useful info at this point? The neuro also talked about the possibility of doing a sleep study. My DS sleeps heavily, wets the bed almost every night, & is very hard to wake up. I think his sinuses may be an issue there. When he was a baby, most of his pictures are with his mouth hanging open because he was congested so often. But we know now that he had a milk allergy (IgG). And nowadays, he has added a few more. Still I can't help but wonder if he is one of those kids who would get better if he had his tonsils &/or adenoids taken out. This spring's allergy season caused a waxing that has been really scary. Anyway, so can anyone tell me from experience if an EEG or sleep study are worth doing & what we might learn from them?

I just bought some inositol powder at the store, along with some P5P. Should I hold off on the 5-HTP or Tryptophan until we have him on a steady dose of the inositol? Or should I have go with 5-HTP first? Off to check out your link - thank you!...

We are looking at Dr. Jane El-Dahr over in New Orleans, Louisiana. She is on our United Healthcare plan AND she has experience with PANDAS patients. She's even listed as one of the authors on an IVIG study with Bradstreet & Singh! - http://www.icdrc.org/documents/High%20Dose%20IVIG%20Bradstreet.pdf Do we need to try to find a doctor who will refer us to her to get coverage for going out of state or does it matter?

Just wanted to let seekers for Houston, TX know that we just recently went to see Dr. Rotenberg. He is a very nice neurologist with a great, easy-going manner, but as far as I can tell, he is completely mainstream-minded. So if you're looking for a regular neurologist, I recommend him; but if you're looking for a PANDAS doc or at least one who is open to exploring the immunological avenues of OCD/Tourette's, look elsewhere (at least at this time - we can hope ongoing research will open more medical minds soon!). ~Grace

Thank you for the replies! I looked it up & there is a place in Houston that offers CBT & ERP. Don't know if it is any good - or covered by our insurance - but I will look into it. We're going to try natural supps, & then if we see no improvement, give in & try the Zoloft. I finally went ahead & emailed Dr. K. To be honest, despite what you all had told me, I was skeptical that I would hear back from him. I heard back from him less than 2 hrs later! Based on what I told him, he said that it was worth pursuing the possibility of a PANDAS diagnosis -- but unfortunately, he does not know anyone near by us that he can recommend. My DH said that he believes we can handle consulting a dr in Dallas or nearby Louisiana, but is worried about what kind of $'s we are looking at. Can anyone give me a real general ballpark figure for initial consultation & labs? $5K would be difficult but do-able; $10K or more would probably be impossible. Is insurance likely to be of any help? Esp. if we have to go out of state? (We have United Healthcare)

I took my 18yo ds to a neurologist for the first time today. Nice dr, seemed fairly positive on natural treatments, but totally mainstream mindset. My ds has Tourette's, but all the tics are OCD in nature - they are set off by a particular location, a noise, a person, etc. It has gotten really bad such that it takes him 20 minutes to put on his socks & shoes - even worse, he struggles to make it to the bathroom on time cuz he has to go thru so many things to get there & his sleep is suffering because he has to go thru so much to get into bed (which is a vicious cycle because being tired makes his problems even worse). We homeschool & he is ~2 yrs behind on his schooling. And if someone makes a noise during an episode, even a sigh or clearing their throat, he does this screaming/bellowing thing that we're afraid is going to freak out our neighbors. His quality of life sucks at this point - and ours is suffering, too. The dr. wants to put him on Zoloft to increase his serotonin which he believes will help reduce the OCD side of the tics. I seem to recall reading that using such drugs over the long term actually leads to even less serotonin so that the problem is actually made worse over time. I'm wondering if we can improve his serotonin naturally. Or should we try the Rx as a crutch in hopes of reducing the tics to the point that he can function enough to take better care of his health needs & then hopefully wean him off over time? Or is that just wishful thinking? I strongly suspect my ds's problems are autoimmune, but have no clue how to find out without breaking the bank. We live near Houston, TX. I have received lots of wonderful advice, but we can't afford to do a whole lot of tests or travel cross country. We have a dr. who I don't have a whole lot of confidence in on her own, but I think would be open to doing phone consults but I'm not sure how well that would work either. I would love to hear your opinions on where to go from here!

Has anyone here used a modified ketogenic type diet? (Similar to phase 1 Atkins) I have been seeing encouraging studies on epilepsy & autism with this & even found some that are being tried for OCD and Tourettes patients (separate studies). I'm considering trying it with my 18yo, though with his dairy & egg intolerance it will mean eating meat & veggies & supplementing MCT oil all day long to make it work which I suspect we won't be able to maintain for very long!

tpotter, The hand flapping thing & Aperger's sx's are long gone - or long buried under the TS who can say? I do also have a 13 yo with high-functioning autism sx's - but I had one of my mercury fillings replaced while I was 5mos pregnant with him & in his case I am about as sure as one can be that his problems were caused by mercury damage. dcmom, How would I go about getting the research test for PANDAS by Dr. Cunningham?

Fixit, I need to do some digging thru my son's labs - I remember his first immunology panel had really low, or maybe it was even zero, IgM & wondered at the time if that was normal. Is it? When I was 10yrs old, my father (an Air Force lifer) was stationed in Germany & we all went with him because my mom is originally from Belgium & wanted a chance to spend time with her dad before he passed away. While we were in Belgium - approx. a month after all those immunizations they make you get - I caught some kind of upper respiratory bug. I don't really remember much about the symptoms other than my mom assumed it was a cold, but I do remember that I was coughing a lot. One afternoon I was sitting in my aunt's kitchen, & as I was coughing, suddenly - with no warning of any kind - threw up. Long story short, whatever I had apparently had weakened my sphincter so much that every time I coughed, it forced the sphincter open & my food came back up. It was awful. I became afraid to cough & got in the habit of just clearing my throat over & over again until it subsided. It was over a year of suppressing my coughs before I healed to the point that I could cough without losing my stomach contents. Now I am looking at the stuff on myco p & wondering if I might have had that. Is it possible for my body to harbor that bug & pass it on to my son? Seems unlikely. Is it possible that however it affected my immune system was in some way passed on to my son? The only known history of tics in my family is on my mother's side - she had tics for less than a year when she was approx. 10yo & then they went away - which has a PANDAS sound to it, doesn't it? (I do also have a longtime habit of running my fingers thru my hair that I am now believing is a mild tic as it has always felt a bit compulsive & I feel a little uncomfortable/slightly agitated when I try not to do it)

Wendy, while not impossible, I have to think this to be an unlikely issue as we spend little time outdoors & even less in woodsy areas where he might have gotten bitten by a tick. We had two outdoor dogs at the time that he was born, but they passed away when he was just a few years old (& because they were big dogs, he was too small to really spend any time close to them). Can fleas transmit something similar to Lyme? We did have cats up till 4 yrs ago when the last one passed away & occasionally we had problems with flea bites.

Well, I went ahead & made an appt. with Dr. Joshua Rotenberg here in Houston. http://www.neurosleep.org/Services.html He is not a PANDAS doc but is at least familiar with it & some members here have said that he will do treatment for diagnosed cases at least. And at least he is a neurologist who has some experience with tourette's, ADHD, autism, epilepsy, cerebral palsy, etc & specializes in sleep disorders - which we certainly have now that the melatonin has stopped working so hopefully he will at least be able to help us with that. Hopefully. But I figure if we do have to go with Rx treatment, at least this guy has familiarity with both the mainstream & the natural approaches which is better than a doc with mainstream blinders & an anti-biomed attitude. Soonest appt I could get was for August 16th. Don't know if he would be willing to do a phone consult with one of the PANDAS specialists or what tests he would be willing to do. What would you recommend that I try to ask him for?

My son has been a bottomless pit since he was born & wanted to nurse constantly (he's 18 now)! He is never satisfied with his meal until his stomach is physically telling him it is full (ie. distension). I figure it must be part of his hormonal signals being all screwed up so that his leptin/ghrelin hormones aren't signalling hunger & satiety like they're supposed to. But what to do about that? I wish I knew!

Some other factors that I forgot to mention: My son's paternal grandfather died of Alzheimers Has a genetic tendency to Type 2 diabetes on both sides of family Son tended to be hypoimmune/under-responsive when he got sick Did spend some time in daycare his first 4 or 5 yrs with occasional resp. tract infections & a few ear infections. Believe he tested positive & was treated for strep around age 6

I posted here a few weeks ago (months?) and was the grateful recipient of many offers of support & encouragement. I was going to post my son's info & ask for advice, but we took another downward spiral & it has been all I can do to cope these last few weeks. I'm finally back in hopes that you all can help me decide what to do now! To start, we live just west of Houston, TX, & my son - my firstborn - is now 18yo. Our puzzle pieces: Genetically speaking, my son has a pretty good likelihood of allergy/autoimmune issues. My DH was an Rh baby (his mom's 3rd) & nearly died at birth. Then he had an allergic reaction to codeine that nearly killed him at 4 & they had to put him in an oxygen tent. Though he is above average intelligence, his memory tends to be a bit erratic, poorer than average, most likely as a result of those things. He also is prone to skin allergies (esp. to fragrances). He has had seasonal allergies as long as he can remember - as have I. I had IBS as a teen (following immunizations to go overseas & then an illness I picked up in Belgium), and a bad flare up during a summer semester in college due to stress, then seemingly went away. I probaby had milk issues as a kid - I had those dark circles under my eyes even as a toddler. Developed small patches of eczema. Also took antibiotics for years as a teen for acne - tetracycline then minocin. Used retin-a for 2 years & then developed an allergy to it. Diagnosed with hyperthyroid after my last baby (#5), but I had symptoms of thyroid issues developing before I ever got pregnant, & now suffering adrenal fatigue to boot (self diagnosed). I had a mercury filling (#5) placed by the dentist approx. 2 mos prior to conceiving him. When my ds was born, I had an emergency c-section (his head was too large to pass thru my pelvic cage) & developed a yeast infection afterward. Son & I had yeast issues (thrush) during 2-3 mos breastfeeding that was misdiagnosed, not properly treated once ds developed white patches in mouth, but never really went away & still cropped up a few times while he was on formula as ringworm around his mouth & on his cheeks. Had a reaction to milk-based formula & was switched to soy (yeah, I know) for his first year. Switched to cow's milk at 1yr with no apparent reaction. Developed skin reaction to dryer sheets so I stopped using them. Showed signs of seasonal allergies in his first year. We did all the basic routine immunizations of that time thru age 10 (hep b had just come out that year, the AAP wasn't pushing it yet & thanks be to God the dr agreed with me that it seemed totally unnecessary). Son's development was slightly above average, but his coordination & spatial awareness seemed a little off. First concrete signs of something wrong began to show up around 3 or 4, but we were completely clueless. We would be saying bedtime prayers with him & he would stop saying them. So we would prompt him to say his prayers out loud & he would insist that he was. At that age he was an incredibly docile & obedient boy so it made no sense - we could not figure out where that was coming from. To this day we still have issues with him insisting that he answered or said something when we all know for a fact that he never spoke out loud. I can only assume that was the beginning of his attention deficit that was developing. He would raise himself up on his toes & flap his hands when he got excited - like while he was watching his dad play a video game. When we chided him not to do that, he switched to a kind of hand shaking thing which at least looked less strange so we mostly let it go. He was sensitive to loud noises - he fell apart when we visited Mall of America & they started their indoor fireworks display & he got a driving toy for his 4th birthday that had a gear shift & he could not stand it in high gear & would get upset till it was turned down. He developed this thing where he would spit every time he heard a kissing sound which of course made me balistic (yes, on the carpet) and he began wiping his mouth on his shirt instead. He was going around with what we called "spit halos" on his shirts all the time. He began to develop red, irritated skin on the backs of his hands & wrists. We weren't sure if he was washing his hands compulsively or if he just wasn't rinsing the soap off well or what. Seemed more like the latter than the former. He also started to do this thing every time he sat down where he would say a prayer. I asked him what that was about & he told me that there was a sort of cloud of demons or something similar to that so he needed to pray to keep them away. But now when I ask him about it, he tells me that he made it up so that he would have an explanation for what he was doing & that sounded like a good reason at the time. Around age 5 or 6, he started having trouble with eye contact - freaked me out, it had never been a problem before. Knew nothing then about autism. Later, around age 10 or 11 I think it was, I learned about Asperger's & started to think he had it. Things have just incrementally escalated over time. He developed a thing about his sister touching him & the sound of her voice. He began having to go thru stuff to get thru the kitchen doorway & then he started making a humming noise & putting his fingers in his ears - he says to block out noise so that his habits don't get messed up. Now he does that & actually goes thru a string of words or counting over & over again till it passes. In fact, just a few months ago, he started bellowing during his humming if anyone made a noise or even sighed during his habits - that one has put the worst stress on our family because his episodes seem to go on forever anymore & my younger kids can't keep quiet that long. Now we are at the point that he has to go thru a series of habits virtually everywhere he passes thru the house. Maybe I am misunderstanding the terms, but they have always waxed, and never really waned. We are always either getting worse or maintaining the most recently established status quo prior to getting worse. The tics are compulsive in nature - always triggered by a sound or passing thru a certain place - is that typical of Tourette's? He has developed increasing difficulty with falling asleep & staying asleep. We had him on melatonin with good results but it seems to no longer be helping. He still wets the bed at 18 & the DDAVP/desmopressin tablets don't seem to help much. We homeschool & he used to be able to not tic when we went out in public, but now it is starting to come out more & more. His memory is messed up. His attention span is messed up. He is majorly behind on schoolwork (doing 9th grade English). And our family is struggling to function around him with any semblance of normalcy - meanwhile he is resentful whenever we don't accomodate his problems, but there is only so much I can do when it takes him 20 minutes just to cross from one side of the house to the other & then we have to wait thru a long series of tics once he finally gets there. His siblings are getting the short end of things. And DH is talking about if we don't find something we can all live with, we'll have to put our son away because we can't live like this. So at this point, I am desperately & frantically trying to figure out the best course. We've worked with some DAN docs & had some tests done. Our son has dysbiosis, maldigestion, low cholesterol, low B-6 & B-12, skewed amino acids inc. low gaba & taurine. We've tried supplementing with nothing really "wow". I've been trying to eliminate food intolerances (wheat, dairy, citrus, eggs) but keep falling off the diet after a month or so - wondering if that might actually be making things worse. Last round of tests showed that he had developed an additional intolerance to candida. We did a challenge test for heavy metals & his lead & mercury were within the green, though the lead was at the border of yellow. I have a sensitivity to wearing any metal except gold & wondered if he might have a metal sensitivity creating inflammation in his brain (ie. it wouldn't be the amount that was the issue, but simply its presence in the brain tissue). Anyway, to top all this off, my DH has had his hours cut for the 2nd time this year & we have even less money for doing anything now. I have been considering trying a modified ketogenic diet, but I'm not sure I can do it with all of our dietary restrictions & the increased grocery bill for all the additional meat I would end up buying as it would pretty much be meat & veggies plus MCT oil all day long. Sheesh, if anyone has actually made it thru this ridiculously long & not all that coherent post, I would be very grateful for any & all opinions & advice!

Our family is dealing with a lot of IgG food allergies. We had to drop beef for a while and found that bison is a wonderful substitute - we were able to use it just the way we had been using beef (our grocery store carries ground bison & bison steaks). It's not exactly cheap, but the nutritional profile for bison is even better than chicken. Anyway, that allergy subsided substantially and we now eat beef about once a week. We are on a 4-day rotation diet & our meats are: turkey, bison, chicken, pork, & Fridays are meatless (we are Catholic - we also can't do eggs & my DH hates seafood - Fridays have been tough!) We are also non-dairy and I have mainly used water, coconut milk & coconut cream for replacements with great results. No cheese alternatives for us (no soy or rice allowed either), but we've gotten used to it & don't miss the flavor all that much though I'll admit that we do miss pizza & snacks like cheddar cheese & apples. And we also had to drop corn. Our biggest difficulty with corn-free is that we miss tortilla chips. We are currently doing grain-free & using nuts, nut butters, & nut flours to replace grains. I never thought that I would be able to give up cereal - it was my comfort food for the first 3+ decades of my life! - but I have found nuts to be a very tasty & satisfying alternative. My biggest difficulty at this point is cooking things from scratch. There are 7 of us & I seriously miss the convenience of convenience foods! I have substantially simplified the way we eat, though, and that has helped make it do-able.

Thank you so much everyone! I have been feeling so alone in deaing with all this & it brings tears to my eyes to have so much unexpected support (esp when I was feeling so witchy for posting the way I did earlier). I am going to try to rest my brain cells for the night (my son actually made it into his bed by 12:07 for a change!! Thank You, Lord!!) and come back here with a better attitude & my questions tomorrow! ~Grace

So if I want to find out if my son has PANDAS, would Rotenberg be good to use then, or should I be looking for an allergist/immunologist who is open to the theory or what? Thanks for the list of tests, Fixit! We've been struggling with trying to keep to a gluten/casein (+ eliminate IgG allergen positive foods) free diet for a while now & never been able to maintain it for more than maybe 2 mos at the most before something sends us off track. I have a suspicion that the back & forth thing with our diet is probably hurting our son more than if we were just either doing it or not. In my panic now, I'm trying hard not to do too much and make things worse for him just because his body is trying to cope with too many changes at once. This is so hard. And so expensive. And now my DH has just learned that they're cutting his hours at work.

Okay, I hope I'm not about to get flamed to a crisp here, but I am a basketcase trying to decide what's best to do since my 18yo son has recently gotten so bad that he spends most of his day ticcing & little else besides eating & the bathroom (which he doesn't always make on time anymore because he has to go thru so much just to get there). I have been looking at PANDAS trying to figure out if we should fork out the money to explore that avenue & which doctor & what tests, etc. So I came across Beth Mahoney's facebook page & I see a lady asking the same basic questions I have & Mahoney graciously refers the woman to her Saving Sammy website & her "tool kit" - which turns out to cost $27.97. http://www.savingsammy.net/productsandservices.html So now that I've vented & probably alienated a lot of people here, is there something worthwhile to all this that I'm just clueless about? Or is there a way to get the answers & info I need without paying for it?

Can anyone here recommend a neurologist in the Houston area? My son just turned 18 this month so I don't know if that rules out a pedi neurologist or not - he's had tics since he was at least 4 and they've gotten increasingly worse over time (in fact, last night was the worst ever - he almost couldn't stop & there was absolutely nothing I could do to help him & I had to run to another room & close the door so he wouldn't hear me sobbing). We've never had PANDAS checked out (didn't even learn about it till recent years) & now I'm wondering if it's too late because he would have had it so long (I saw in the post history here that someone was going to try a Dr. Joshua Rotenberg - any feedback on him? He doesn't appear to be covered by my insurance plan, but if he's good, we'll try to afford him)

Laurensmom, I had to back off from looking at this stuff this weekend - it's hard to make sense of a deficiency of brain histamine when your body is overwhelmed by it peripherally! So many of our kids seem to do better with natural "anti's". Wish there was a way of knowing how those natural products affect H3 receptors - for ex, quercetin is supposed to be able to cross the blood brain barrier. And we know it helps to stabilize mast cells & somehow functions as a neuroprotectant, but we don't actually know what it's doing in there. And so much of what histamine does is tied in with the other neurotransmitters. Consider the article I've posted below - it says "histamine modulates the glutamate NMDA receptor..." So for example, if histamine affects the glutamate pathway, odds are pretty good that glutamate also affects the histamine pathway because these things typically are shut off or triggered by feedback mechanisms. So isn't it possible that something like an error of glutamate metabolism or some other metabolic pathway related to histamine production/metabolism could also lead to low brain histamine? I don't mean to be discouraging - this news is still an important puzzle piece - I'm just thinking it may not be quite as helpful for us here & now as I first hoped. Prog Neurobiol (2001) 63: 637-72. The physiology of brain histamine. RE Brown, DR Stevens, HL Haas Histamine-releasing neurons are located exclusively in the TM of the hypothalamus, from where they project to practically all brain regions, with ventral areas (hypothalamus, basal forebrain, amygdala) receiving a particularly strong innervation. The intrinsic electrophysiological properties of TM neurons (slow spontaneous firing, broad action potentials, deep after hyperpolarisations, etc.) are extremely similar to other aminergic neurons. Their firing rate varies across the sleep-wake cycle, being highest during waking and lowest during rapid-eye movement sleep. In contrast to other aminergic neurons somatodendritic autoreceptors (H3) do not activate an inwardly rectifying potassium channel but instead control firing by inhibiting voltage-dependent calcium channels. Histamine release is enhanced under extreme conditions such as dehydration or hypoglycemia or by a variety of stressors. Histamine activates four types of receptors. H1 receptors are mainly postsynaptically located and are coupled positively to phospholipase C. High densities are found especially in the hypothalamus and other limbic regions. Activation of these receptors causes large depolarisations via blockade of a leak potassium conductance, activation of a non-specific cation channel or activation of a sodium-calcium exchanger. H2 receptors are also mainly postsynaptically located and are coupled positively to adenylyl cyclase. High densities are found in hippocampus, amygdala and basal ganglia. Activation of these receptors also leads to mainly excitatory effects through blockade of calcium-dependent potassium channels and modulation of the hyperpolarisation-activated cation channel. H3 receptors are exclusively presynaptically located and are negatively coupled to adenylyl cyclase. High densities are found in the basal ganglia. These receptors mediated presynaptic inhibition of histamine release and the release of other neurotransmitters, most likely via inhibition of presynaptic calcium channels. Finally, histamine modulates the glutamate NMDA receptor via an action at the polyamine binding site. The central histamine system is involved in many central nervous system functions: arousal; anxiety; activation of the sympathetic nervous system; the stress-related release of hormones from the pituitary and of central aminergic neurotransmitters; antinociception; water retention and suppression of eating. A role for the neuronal histamine system as a danger response system is proposed. http://www.ionchannels.org/showabstract.php?pmid=11164999

Pat, did you check to see if the quercetin has any corn derivatives in it? Or it could be some other filler that he is reacting to maybe? We've always used quercetin in combination products like D-Hist or our vitamin C supplement from Vitamin Shoppe. I've never noticed them to trigger anything in my guy, but then you know how variable these triggers are for our kids. Yeah, the dose does sound high. Ours ranges to ~half of our vitamin C dose. I've been seeing max adult dosages of 800 - 1000mg. Even in this interesting study - Reversal by quercetin of corticotrophin releasing factor induced anxiety- and depression- like effect in mice. http://www.ncbi.nlm.nih.gov/pubmed/20447436 The max dose for the mice would work out to 1300mg. I would definitely double check with her. ameecram, I'm not familiar with pulsatilla. I see that it is generally considered useful for depression or anxiety - does it also help with allergies? P.S. How do y'all change the headers or titles of your replies?