GraceUnderPressure

It is possible that there is more going on than he is sharing with you. My ds18 was always very secretive about his "habits" as we used to call his compulsion-based tics. His problems began at age 4 but to this day, he cannot (possibly will not, but I think he is being honest here) explain why he felt *compelled* to hide it. I suspect that it is in some way actually part of his condition because it has led him to lie & disobey & get into all kinds of trouble over the years rather than telling me honestly what was going on - and that is totally NOT the little boy he was before the storm took over his brain. Only recently have I learned of the anxiety & compulsions that have possessed him all these years, increasing with each illness. BTW, we thought he had Asperger's when this first began or possibly NVLD. I believe there is a definite overlap between ASD conditions and PANDAS/PITAND conditions somewhere along the line. I have long believed that the autoimmune theory of autism was the most credible as it seems to make sense of all the puzzle pieces we have of that disorder at this point. My ds13 would fit a PDD-NOS diagnosis if we bothered to have it done. But in his case, I know that he was damaged by mercury because I had an amalgam replaced while I was 5 mos pregnant with him - peak brain development time. I read the govt's 1997 report on mercury and my ds's issues fit in perfectly with the symptoms they reported of low level mercury exposure on the fetus. Not only did it damage the speech areas of his brain as well as his attention span, but his immune system has always been hyper-reactive to any little thing that comes along. My ds18 was the opposite. I discovered that I had my 5th amalgam placed approx. 2 mos before I would have conceived him - they say it takes mercury ~6 mos to clear or store (mostly store). I always thought his immune system was hypo-reactive as he never seemed to get the bugs that the rest of us passed around, but several dr's have told me that his immune system is super-efficient. So maybe that's why his immune system has been fooled by some mystery germ into attacking his basal ganglia...

Yes, we're working with Dr. Rao. I talked a bit with Dr. Infante by email, but he is still new to all this & was talking about an approach that was more standardized care & conservative in approach than what I believe we need at this point. And we seem to be a PITAND rather than a PANDAS case - I'm not sure he's there yet. Anyway, DH & I are still leaning toward just doing the overnight in Dallas - at least for the first one. Are you still working with Dr. R or are you working exclusively with your lyme dr now?

I know a lot of our kids struggle with seasonal allergies. We all react to oak pollen which is getting ready to unload on us within this next month or so down here in zone 9. I was just wondering if anyone can tell me if that had a negative effect on IVIG results (similar to the way some kids will be doing well & then experience another exposure to someone's illness & be set back by it)

Stephanie, How are you getting 1 trillion probiotics a day into your boys? What product are you using? We tried VSL#3 DS (the one on Rx) and the stuff (only comes in a powder form) had such a repugnant smell/taste that we weren't able to figure out a palatable way to get it down even just once a day!

Do you have a link to the article or the title so we can search for it?

My ds18's is a form of distress also. He shrieks when the noise from the rest of the family is messing up his tics. He says that he is unable to talk when a series of tics hits him & that's the closest he can come to telling everyone to stop making noise till it's over (in addition to helping drown out the noises that are messing him up). Thankfully, that's one of the few things that was helped by low dose zoloft because that is one of his problems that was stressing the family out the most. Ever tried keeping a 3yo completely quiet for an unknown length of time? DS18's sound sensitivity hits extreme levels during this time, & if we whisper, he says it sounds like we are shouting in his ears, we cannot even sigh during those times without messing him up. And if we mess him up, it increases his tics episode, not additively, but exponentially.

Can anyone recommend a good way to find a local or home infusion place? It appears that there are many here in the Houston area, but we'd like to have some idea that we're using a company that uses best practices, provides proper training, etc. (We'd love to save money & avoid driving up to Dallas & staying overnight to do the 2-day infusion, but we're also nervous about winding up with some LabCorp-style operation that puts dollars before decent patient care)

A preliminary search didn't reveal much to be excited about so far as I can see. They did this study - Comparison of clinical characteristics of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and childhood obsessive-compulsive disorder. http://www.ncbi.nlm.nih.gov/pubmed/20807071 Where they concluded: Distinguishing clinical characteristics in PANDAS, which included urinary urgency, hyperactivity, impulsivity, and deterioration in handwriting, are linked to basal ganglia functions. These clinical characteristics will aid in the differentiation of PANDAS children for research and clinical purposes and ultimately advance our understanding and treatment of this disorder. I thought these distinguishing issues were already known? And then I came across this - Researchers explore the genetic roots of pediatric OCD as a step toward better treatment http://www.ahc.umn.edu/patients/ocd/index.htm Where it mentions they are putting together a heredity-type study for prediction that doesn't look particularly helpful, IMO, either. But then that's because I already have my affected child(ren) and would prefer TREATMENT research at this point so I will admit a bias...

I think I understand what you're saying. My initial reaction was similar to yours (I used to work in the healthcare field, as well, though we mostly dealt with pinworm) - and in my exploration of this topic, I discovered that some people are actually using human whipworm & hookworm which I also find pretty worrisome. Still, as I watch our 18 yo son continue to deteriorate to the point that he is less functional than my 4yo, I can also understand their desperation - a worm infestation is truly insignificant compared to what we're dealing with right now. (Though, as I mentioned to my DH, it would be our luck to end up with PITAND AND a worm infestation!) But TSO is not dealing with HOOKworm (necatur americanus) which, as you suggest, can really damage the intestines. Or even the human variety of whipworm (trichuris trichiura), which isn't quite as nasty as hookworm, but can still do a number on the gut. This is the pig version of whipworm (trichuris suis) which they have studied well enough to know that it does not inhabit the gut. There have been some very rare exceptions, but those have been in people whose guts had significant damage before they began where it sounds more like the worms got caught in pockets of damage & just "set up house" where they were stuck. (Remember that most of the people using TSO right now are patients with IBD whose cases are not responding to the initial treatment options so these are people with serious gut issues already) And I believe the potential is there for any of the helminths to cause an allergic reaction of their own, and while that is not common, neither is what our kids are dealing with, so I do wonder if some of them might be more predisposed than average to developing such a problem. While I am exploring the research as I'm able, we're not likely to try it anyway even if we do become convinced by it because the price puts it out of our reach at this point. It does seem worth keeping an eye on at any rate. Hopefully, they will be able to figure out how the worms accomplish the Th shift & find a way to do it without the critters - or at least render them harmless in some way beforehand. If it becomes approved in our country, the price will be significantly better & insurance co's will probably even pick up on it as it would be cheaper than traditional therapies - but we're talking about a minimum of a decade or more down the road from what I've seen so far. Edited to add: Wow! I just noticed the number of views of this thread...

Our dr in Dallas is encouraging us to try to find a local place to have our IVIG done so that we don't have to pay for an overnight stay up there for the two-day treatment. So far, though, the hospitals that I see with an infusion center will only work with dr's who have privileges there. Has anyone found a place around the Houston area that does it? My DH doesn't want to spend money we can't really afford, but he also doesn't want to use just anybody to get it done either, so he's leaning toward biting the bullet & doing the overnight thing. I told him I would ask here, though, just in case someone might actually be able to recommend a place to us as this is the go-to source for such info! ~Grace

Holly, So sorry to hear about this bump in the road (at least I hope & pray that is all it turns out to be for you all). I am glad to hear things have been otherwise moving in a positive direction at least! Hopefully a simple increase in abx will be sufficient to nip this in the bud! Do you know if Dr. Infante & his team have finished working out their protocol yet? I do wish he was open to PITAND as well as PANDAS. ~Grace

Holly, how have things been going since the ivig? Seeing improvements?

My ds18 has tics & was dx'd w/TS. His tics have an OCD component to them in that they are triggered by particular sounds or locations & I think also by thoughts. The last time he got an upper resp infxn, the compulsions were coming so randomly that they might have seemed spontaneous had the compulsions not already been so well established at the point. But those eventually settled enough for him to figure out where they were coming from. He doesn't like to talk about them so I've had to figure out a lot by piecing together my own observations over the years with the little snippets of info that he occasionally reveals - this is something that I noticed was different about my ds when I talked to other moms whose kids had TS. Their kids seemed to sort of accept it & take it in stride (relatively speaking); mine was always very secretive about his problem. I was dismayed when I recently learned from him that he actually preferred to be punished by me back when I had no clue what was going on & had misunderstood what he was doing rather than to explain what was really going on. My ds's tics have virtually never remitted (one exception occurred when we first started the immune support plan from our DAN! dr, but it was gone as soon as allergy season kicked in). Instead of the classic "wax & wane" pattern, we say that he "waxes & maintains". He gets worse when there's an illness in the house (usually a virus - we think he's a PITAND rather than a PANDAS) whether he gets it or not, & while the exacerbation might decrease in severity ever so slightly, that pretty much becomes his new baseline.

Well, clostridia is supposed to be capable of creating neurological problems. What kind of urine test? Our dr just had us do a poop test to check for it. I would much rather have done a urine test!

I'm not sure why you think this is archaic since I have never heard of anything like this before - unless maybe you are thinking of leeches? And I'm not sure why you are railing against the medical community since this came from the research community & has not found its way into mainstream yet (& I suspect it won't be accepted readily either). Anyway, my DH asked me to look further into it & it turns out that they are using whipworm from pigs - not the one that infects humans - which is why TSO patients have to continue to ingest them since they only pass thru us rather than inhabit. So doesn't that minimize the risk from this radically more than that from IVIG? One parent on a forum I was perusing asked why so many of the same people who think nothing of deliberately ingesting beneficial bacteria & fungi are so horrified by this when it's just a new kind of probiotic. I thought that was a very interesting perspective...

I saw a rumor on another forum that a major pharma co has secured a patent of some kind on this therapy - does anyone here know how to research that kind of info?

Thanks, all, that's encouraging! mkur, did your ds have the ivig recently? Is he a recent dx or has he had PANDAS/PITAND for a while? I'd love to hear how it went - if it made things worse initially, if it seems to be helping. I'm wondering/worried how my ds18 will react to it being older & having had this for at least 14 yrs already. P.S. We're just west of Houston - are you anywhere near?

Last I heard about this, researchers are trying to pinpoint what exactly the worms are producing that is creating the beneficial effects on the immune system for some patients so that they can develop a way to give it to people without the worms. I'm praying for that alternative to be available soon!

My ds18 has low serotonin. Initially his neuro wanted him to take a low dose of zoloft to see if it helped, but I rejected it as a solution because I was so sure that my ds's problem was not low serotonin, but whatever is causing it to be low. (And I was right - so nice to be able to say that for a change) However, Dr. R talked me into trying low dose zoloft (initially 50mg, recently upped to 75mg with his latest exacerbation). He said it is only for symptomatic relief while we work on finding & treating the underlying cause. It has helped a little. My ds is so messed up now that even a little is a lot if you KWIM. He needed the ray of hope. There have been studies that showed that zoloft seems to positively affect one part of the immune system - maybe you can search it or someone hear can help with that - so there is more to it than just its effect on serotonin uptake. It's definitely a proceed with caution kind of decision, but several moms here told me that it helped their kids back when I was trying to decide whether or not to use it.

Thanks! I will do that! Dr. R isn't familiar with lomatium, but he has always been very open & flexible, in addition to his own lengthy experience, so we should be able to figure something out!

Dr. R follows Dr. K's 2-day IVIG protocol. When I asked him about IVIG initially making things worse, he said that he sometimes gives cortisone (not sure if he said pred or hydrocort or even named what form now) along with it & that seems to reduce the negative effects. So I would like to hear if anyone else had it done that way & did it seem to make a positive difference? (We tested for Lyme at our last appt & will be going over those results before we commit to IVIG)

All good! Esp the Fact sheet! Thank you! I'll try the RF analogy - not sure if they really know what that is, but I was reminded that since my oldest sister suffers from MS, that could probably work as an analogy as well (ie. "it's like MS, but instead of attacking the myelin the immune system is attacking a part of the brain called the basal ganglia")?

Thanks, Michael! I stumbled across a dad named Stan Kurtz who has been teaching parents of kids with autism how to treat viral kids & realize I may have put my foot into it this time. I'm trying to learn more asap as my ds18's tics are worse now and I'm hoping I haven't gone & pushed him further into this mess. Ibuprofen seemed to help the first couple of days, but not any more. I'm already doing dandelion root & milk thistle for liver support. Would you have any suggestions?

No, I don't think it's new - I believe they are just starting to realize that it's the tip of a very large iceburg. As word is beginning to get out, more & more parents are recognizing that the things they have been told were psychological actually correspond to their child's repeated illnesses. I am one who dismissed PANDAS when I first heard about it because we do not have a known history of strep (only one trip to the dr for it somewhere when my ds18 was between 4 & 6). My son's issues seem to be viral rather than strep. But his story follows virtually the same pattern as the strep kids. Wish I had known about PITAND sooner, but I'm glad that we at least have some answers and can offer him some hope of help even if it may be too late for a full recovery.

Totally ignorant question here - how do I submit our Igenex bills to our insurance (also UHC Choice Plus) for reimbursement?