amyjoy

Do you need a doctor's script to run these tests? Thx HI Well, i think you have to get the kits from an MD but you can call the labs and find out. AND if so, and if your MD doesn't feel good about using them, i'll find a way to get one to you. amy

Hi STEPHANIE Does he seem to have any GI pain? It sure does sound like some kind of gastritis or intestinal ulceration, and maybe instead of just doing a microbial test you can do something that is more expansive and includes overall chemical health of the intestinal tract. Examples are the Metametrix 2100 panel or DiagnosTechs GI Health Panel. both of these look at growth but also, enzymes, inflammation, immunomarkers, stuff like that, to help sort it out. Maybe in the meantime use some Aloe vera whole leaf juice, a tbs or 2 before/between meals to help heal the gut tissue and maybe chew DGL? These won't solve the problem necessarily but while waiting for the test results they can coat, soothe and support the mucilagenous membranes. I hope that offers some ideas for you? blessings amy

Yes i also agree. HOWEVER isn't prior history of encephalitis one of the things that gets screened out for immunizing with specific shots - esp MMR and pertussis? That sounds like something that was missed by her MD and i don't seem to hear that in the news. In my opinion that would have been enough for her to have a medical waver. So this is scary as well.

and p.s. - to really get a good strep culture in a throat swab in a child, you have to get to the area where it is growing. The child should not have eaten or drank anything within some period of time. To do this takes more than the half second that many nurses or medical assistents take because it really aggravates the child and makes them gag. So there is a whole other aspect to false neg cultures - obtaining a true specimen from the child.

I also wonder more and more about the accuracy of cultures. Cultures need extremely controlled environments to grow and incredibly controlled innoculation of perfectly stored media. I hate to say it but I see more and more issues in our office with lab test errors and, problems with cultures. For example one of the GI tests i like to use is by Metametrix and includes DNA screening to look at microbes that are growing, and if bact or fungus is detected they will then do a culture and sensitivity. At least half the time the sensitivity comes back blank with some thing about failure to detect growth on the medium. I called a couple of times and got a huge story about growing stuff on media how there has to be foolproof technique that is difficult. Not sure but if its always been difficult then why am I seeing more and more problems? Is it the level of employee they are trusting to run the tests? How do we know?? I also hate to say it but we get a number of oddities in Quest test results every week and i do question the competency of Quest specifically more and more, they have a strange corporate culture where the only people really dedicated to customer are the sales reps that come to our office. A number of times I've had patients leave Quest lab stations in tears after someone was rude. I don't know but it sure does make it more difficult to trust their results. If overall there is a documented 2-3% false positive rate with rapid strep compared to throat cultures likely due to s aureas growth, how much more would we see due to just poor lab technique?

I think if he uses the full 50mg of benedryl it should have quite a sedating effect. Maybe you can give it before you leave the house and give it a chance to kick in. Otherwise, a little bit of valium could be in order, although it seems like a strong medication, its not that big of a deal with just a bit when used correctly, like, possibly now. GOOD LUCK with, i'd really like to hear how it goes and what their process is like. Love amy

my heart just breaks over this whole situation - the mandatory onslaught of shots with no respect of what that means to any child's immune system let alone the total disregard of even the possibility of a vaccine reaction; the willingness to shove this girl on an anti-psychotic and who the heck involved cps in the first place??? Do we not have any choice or say in how our children get treated at this point?? i had hoped that somewhere we had made more progress as a species. How many parents withhold standard care from their children for a bazillion reasons, and why should this parent and this child be targeted? It makes me feel sick.

Good luck with your IVIG!

I think the concentration of the Florastor boulardii is high enough for an adult, at one twice a day. The jarrow has much less, i think 18billion, so i would use 3-4 per day, as an adult.

One thing an immuno may be able to answer that I do wonder is, how receiving IVIG may affect lab tests? like IgG for myco, for example? would the number go up just because there is more on board? or go down due to more blood volume / dilution?

my understanding is that while you may not need to give zith every day (we do 3 days per week)- one day per week isn't enough. its long acting, to be sure, so technically 3 days/week is the same as a full week of coverage (or the box says 10 days although i don't quite believe that for our kids). because my son has gut issues, every now and then i keep him off for a week or so and give him olive leaf extract which has strong properties against strep. also, don't hesitate to do a strong GI rebuilding program, even while on zithro, just to do the best you can and prevent further damage to the lining there.

It depends upon the diagnosis / diagnositic codes used for billing. if your child has a true primary or secondary immunodeficiency syndrome and meets all of those true lab criteria, there is a good chance you will be ok'd by your insurer. you can actually google your insurer and IVIG and pull up their criteria for ivig reimbursement, its on their website somewhere. the thing is that many pandas kids do not meet those exact criteria. i'm sure there are other yet-to-be-named immunodeficiency syndrome criteria they would meet, but as of this moment, a diagnosis of pandas does not imply coverage for ivig for the most part. in fact there is not a diagnostic code yet for pandas, which is wrong!! There are codes for autoimmune disease not elsewhere classified or immunodeficiency not elsewhere classified, but they are not usually reimburseable unless you really fight with your insurance company. some people are able to get coverage once declined just by fighting it.

My child has CHRONIC STREP Group 4 - my child exacerbates, but we cannot tell what the trigger or pattern is with the exacerbation. CAM kinase = 139 anti-lyso top of range at 320 tics first, and ocd came later current baseline - two symptoms (dilated pupils, a few ankle tics here and there) exacerbations - maybe 5-7 things - mainly tics, plus anxiety, regressive behavior, hand writing goes down, insomnia, emotional, coordination goes down, hyperventilates or feels like he "can't take a deep breath" Am feeling pretty good about his current treatment protocol for the most part. The three biggest things that helped (we tried everything for the past 5 years) = the cranial work - started three years ago took him from non-functional, severe tics including vocal tics with barking, not being able to be at school without me going there to help him at some point nearly every day, not ever sleeping and shaking all the time to no more vocal tics ever, sleeping, overall tic reduction and some overall improvement within weeks going off of gluten (found out he has celiac) major reduction in tics, bloating, joint probs, behavior the ivig in November- magical reduction in tics, ocd, anxiety, mood problems Currently he takes these things every day: probiotics - s boulardii, culturelle and sometimes the Proboulari by metagenics that has lacto and bifido and boulardii avipaxin - anti pro-inflammatory cytokine via acetylcholine pathway support oils mag / minerals at night GI reset by Xymogen that has Glutamine and Imunoglobulins to help restore GI immunity liver + methylation support

YOU GO, PANDAS16!! I love having you on the forum and really value the insights that come from your sharing - and your courage!!!!

i do not believe that the zoloft would affect the outcome or the effects of a steroid burst. the purpose of the burst is to knock out the inflammation of the basal ganglia, which, in PANDAS, is the source of the symptoms. so theoretically it would knock the symptoms way down if the child has pandas. i think the treatment window for seeing measureable affects from the burst is up to 21 days. How long has it been? Did you discuss this with Dr. K?

I'm so sorry its so bad. When DS gets bad, we always use the Avipaxin by NeuroScience (anti- proinflammatory cytokines) and the Coptis Purge Heat by Health Concerns, it helps so much. good luck with it, hope you get some sleep.

Have you done / considered IVIG?

I think the best one is probably Enterolab. But i also use the metametrix 2100, as it is a stool test that includes the microbes but also anti-gliadin IgA ab, immune profile of gut, chemistry, absorption and fermentation. There is an option with the Enterolab kit where you can include a cheek swab and actually look at the genetic component, which was so interesting in our case. my son has a celiac gene and a sensitivity gene. i'm so sure my (ex-)husband has the celiac gene, as he has had GI stuff ever since i've known him. but i had no idea i had the sensitivity gene, as i never think of myself as having any symptoms. but once we went gluten free in our house, i noticed a couple of weeks later that i never had any post nasal drip anymore, which sometimes i would get at night. i guess that's how that manifest in me.

We were on every diet known to mankind and few were helping...but every child is completely different. DS did the feingold for 2 months, not any appreciable change, as we were already off of nearly all food additives and apparently he does not have a problem with salicylates. Prior to that we had done Igg testing, went off of those foods and we saw some change at first but it didn't last. A few months later when we retested the igG, many of the positive foods were completely different than the prior test. it almost looked like a different person's test????? later i discovered that this is because he had celiac, true sprue, but it does not come up on an igg panel. IgG positive foods are a developed sensitivity due to some kind of gut problem, they are not inborn. they can be transient, and clear up and new ones develop all the time until the actual cause of the leaky gut is figured out. it took us years. we had done a blood test for celiac through kaiser without realizing you can't really know with even 90% certainty about celiac with a blood test. it really needs to be done through a poop test or aggressive testing like a biopsy. also, i hadn't totally realized that IgG responses were so secondary. i had known they were developed and that they could go away. but i thought that if we removed those foods for a number of months, that would be enough for the proteins to clear out and the foods to be re-introduced. i didn't know that unless you dig deeper for the actual cause, you could be missing the boat. also, i now couple the igG test with an igE test- these are inborn blood-based allergies (not gut based) and thus even more important to know and remove from the diet than the igG. meanwhile, for poor DS, when we finally went off of gluten a little over a year ago, everything changed, everything. the stomach pain cleared up in 3 days. the joint pain, the foot and heel pain that has tortured him since he was 7 years old - went away in entirety. after all that PT....oy vay. Then, the tics went down some - it lowered the overall baseline of the tics. The pastey bloated skin, so much of it improved...rashes went down, sleep improved, head cleared up alot. I'm not saying that everyone has celiac, but i do believe that each child is different and that there is no substitute for good testing. I read alot on this forum about the igG food testing, which i do think is important to know- but its not a be-all end-all testing. Good Luck with the Feingold. Its actually pretty simple, since just a few things are kind of allowed, it makes throwing meals together quite routine.

phasmid that is so great to have found a piece of this puzzle for your DS!!! congrats!!

Just my 2 cents- Cam kinase elevation in and of itself, for strep or any other reason = encephalitis = PANDAS/PITANDS = symptoms. clostridia in and of itself for many kids = nasty neurotoxins = wierd symptoms and behavior. so your DD has alot that you can work on. with pitands my understanding is that you may or may not ever know the offending agent, but that it has spurred on the autoimmune assault resulting in PANDAS-like syndrome due to inflammation response. its like, all about inflammation, i believe. clostridia has some waste products that can be neurotoxic and affect a child (or adult) through chemistry so very important to clear it up. hope that helps.

You can't just guess about things like this, testing is really important - you just never really know what it is otherwise and could be treating the wrong thing. Testing reco: my favorite kits are either: Metametrix 2100 GI microbial and chemistry (you should be able to get it for $395 if your provider reco's it - otherwise if you randomly are able to get the kit online it could retail as much as $1100+). Diagnostex - don't remember the kit# but their comprehensive analysis. both of these use DNA screening, not cultures or even only microscope assessments.

I find that everyone is different. Some people have extended battles, like 3-4 months, even 6 months. Most somewhere around 2 months and some people even way less. Is this for you? Are you using some anti-viral supplements?

my understanding is that gamma hemolytic (also called non-hemolytic) strep is the enterococcus species that is commensal and naturally occurring in the gut. It is not really pathogenic but if overgrowth can create imbalance, as can any normal flora - even lacto and bifido - if overgrowth. that is because all bacteria or living things secrete waste products and contribute to their environment. if too much of one thing, even those normally found waste products can still be too much and disrupt the balance of the system. does that help?

Prayers to you, yes!! i don't have any brilliant insights or words of wisdom to offer, but prayers, i'm so happy to send to you and your family.