peglem

Here are some threads regarding strep carriage: http://www.latitudes.org/forums/index.php?...&hl=carrier http://www.latitudes.org/forums/index.php?...&hl=carrier

My PANDAS daughter is a strep carrier. Boy, is it frustrating to have doctors assuming that carriage is benign and therefore should not be treated. She does test positive on strep swabs (unless she's on abx) and does not have typical strep symptoms, but she does have behavioral symptoms to strep- anxiety, OCD, rages, tics, fine motor control problems, to name a few. The behavioral symptoms abate with the right abx. Right now you don't even know if she's a carrier, right? And, if she has a pocket in her tonsils causing chronic tonsilitis (even if it is minor), that is still an infection-ACTIVE! I'd get the swab done, if positive, ask for Zithromax (if she's a carrier, zith can help with that if its a high enough dose) and see if you see improvements in OCD and anxiety while on the abx. So, its okay to keep your kid on zoloft, but not abx? That's nuts! Zoloft is way more dangerous than abx! I'll see what I can find on strep carriage for you...there's not a lot, but doctors are assuming it is benign, w/o scientific evidence. There is not much research on this either way (but just a little that questions how benign it is) Here's what I think is happening w/ my daughter- Carriage, basically means that strep, which is usually an extracellular organism, has taken up residence inside epithelial cells in order to hide from the immune system. But, cells naturally perish and are replenished in the body, so as the epithelial cells are just doing that normal process, low levels of strep bacteria are constantly being released, causing the immune system to respond with antibodies (it is certain antibodies to strep causing PANDAS, not the strep itself). Additionally, whenever there is tissue damage from teeth sprouting or dental work, larger numbers of cells die and there can be a burst of strep at that time, with a spike in PANDAS symptoms as well. We've noticed (and a few others on this forum as well) that teething and dental procedures cause exacerbations in my daughter. Is your daughter cutting her 12 year molars, by any chance? Is your pediatrician saying that she will not treat your daughter for strep unless she has classic symptoms of strep throat?

As I recall, zpacs dose 500mg on the 1st day, then 250mg/day for 4 days? Here's the reasoning: The initial higher dose saturates the tissues and zith has a long half life, so the subsequent doses maintain saturation by replacing what has been eliminated by the body in the 24 hours since last dose. Here's what we're doing with my 100lb daughter: We did 500mg/day for 3 days, then 500mg every other day after that. So far that has been working well for us.

wornoutmom, My daughter is on Lamictal. Risperdal did not work for her (her being on it seemed to be a nice placebo for teachers though) and I didn't want to keep increasing the dosage. (But, if it does work for your son, they do make a sublingual, dissolving form that takes effect w/in about 10 minutes if you want to use it on an "as needed" basis). Anyway, about the lamictal- we started it under the care of a neurologist for suspected seizures. But, it helped with mood a little bit. The psychiatrist took over the prescription and it still is the only "psych med" that's been beneficial for my daughter. (she makes the incredible Hulk look like a sweet old granny when she's in exacerbation!) But, it only helps a little-though we'll take every little bit we can get! @ the Stevens-Johnston- its only fatal if you let it go on for a long time, and is the reason they start very low and go very slow on dosing lamictal. If you make it to regular dosing w/o the rash appearing, its likely you'll never see it. If the rash presents on the way up, its very easy to "catch" it in plenty of time and it is completely reversable when you discontinue. Our bigger concern (since the SJ never appeared) is that it can make it hard to sleep if taken too near bedtime, and sleep is definitely something we do not want getting worse (again)! So, we divided the dose - she currently takes 150mg in the morning and 100mg in the early evening. We do also use diazepam as needed...usually pretty effective, especially if we're going into a situation that we know is going to cause a problem (anyplace w/ an elevator, blood draws, dentist).

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms? I think I would get a second opinion from another immunologist. That sounds strange to me. Is it really true that she comes up that deficient but is never sick? I believe that you would generally see some signs of some infections even if the immune system wasn't fighting very hard. Abcesses? Skin infections/long time to heal? Anything like that? She bangs her forehead rather hard and has had a scab there for years that hasn't been healed in years...but she probably has a banging episode at least once/day. She has sores on her wrists and hands from biting, which do take a long time to heal- she doesn't bite a lot, but when she does it is deep. She has a scab on her knuckle that has been there @ a year, I don't think she's bit that one in over a year. About once a year, she will get something that gives her a fever, but she's been on antibiotics for at least 3 years now. Before we found the chronic strep, she was sick all the time- constant sinus and ear infections- sometimes treated, but more often than not we were told it was just allergies, common with autism, and sent on our way. She is very hard to evaluate- nonverbal, largely uncommunicative and doctors mostly just want to pass her off to somebody else... I am not really an immunologist, but it sure sounds like an immunodeficiency to me. My understanding is that some immunodeficiency patients can be managed with just antibiotics as far as having symptomatic illnesses is concerned - so maybe she's like that. I also believe that many of the commonly given tests for infections/infection history are essentially IgG tests, so if she isn't creating IgG appropriately in the first place, or is clearing it, then she might not have positive tests for pathogens that she actually has been infected with. Here is an example: http://www.labtestsonline.org/understandin...s/cmv/test.html Have you checked out primaryimmune.org? I do think she has an immune deficiency and so does her pediatrician...A very curious thing as well- she actually tested low IgE...like undetectable, because low "normal" range is very low in the first place- but I really can't find any info on what that means! I know high IgE usually means allergies. Anyway, we will be getting IVIG...will be interesting to see the results. I have been to primaryimmune.org, there just doesn't seem to be a category that really fits my kid, which, I guess is the reason the docs have such a tough time figuring out what to do with her.

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms? I think I would get a second opinion from another immunologist. That sounds strange to me. Is it really true that she comes up that deficient but is never sick? I believe that you would generally see some signs of some infections even if the immune system wasn't fighting very hard. Abcesses? Skin infections/long time to heal? Anything like that? She bangs her forehead rather hard and has had a scab there for years that hasn't been healed in years...but she probably has a banging episode at least once/day. She has sores on her wrists and hands from biting, which do take a long time to heal- she doesn't bite a lot, but when she does it is deep. She has a scab on her knuckle that has been there @ a year, I don't think she's bit that one in over a year. About once a year, she will get something that gives her a fever, but she's been on antibiotics for at least 3 years now. Before we found the chronic strep, she was sick all the time- constant sinus and ear infections- sometimes treated, but more often than not we were told it was just allergies, common with autism, and sent on our way. She is very hard to evaluate- nonverbal, largely uncommunicative and doctors mostly just want to pass her off to somebody else...

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms?

Did you have him swabbed for strep, or just checked titers? If he wasn't swabbed, I'd get that done ASAP. Many of our children test positive when swabbed but never get high titers. Can you get the doctor to do a month long trial of full strength abx? If he shows improvement in the psychiatric symptoms on abx, that would indicate an infectious agent causing the problem. You might try pleading that the abx is less dangerous than psych meds and you'd like to try that first.

If your child's psychiatrist has done a OCD evaluation (YBOC?) that would probably be useful, in addition to your timeline.

So far on the forum, we seem to find that prednisone (a very specific type of steroid that is highly anti-inflammatory and immunosuppressant) provides only temporary relief. While prednisone does calm the immune system, if the original triggers are around (virus, bacteria, auto-immune) then when the prednisone is stopped the B-cells will reactivate and release more antibodies. If the original trigger is gone, then prednisone can be effective at breaking an inflammation cycle. Buster P.S. And prednisone isn't anything to mess around with. It has lots of nasty side effects if someone is on it for any prolonged period. It is not the same thing as the anabolic-androgenic steroids (fake testosterone) you were referring to. Prednisone is a very specific synthetic corticosteroids that mimic the action of cortisol (cortoisone) -- prednisone is a immunosuppressent and anti-inflammatory. If Danny has low Igg and low IGa levels will steriods be a good thing or a bad thing I don't think those are that important as far as steroids go (Allie is low in both of those as well), I think the reason why our positive effects did not last longer is because Allie still had intracellular strep, and though she was on antibiotics at the time, suppression of the immune system allowed the strep to grow w/o even the little help that her immune system would have given in fighting it. During the steroid those auto-antibodies were reduced, giving some relief, but came right back afterwards. Also, the intracellular strep was stirred up w/ dental problems at the same time.

So do you think I should try them with danny? HOw long are the results?Are they lasting results (if you get them)? Melanie Melanie, I can't tell you what to do- our children may have entirely different reactions. For us, the results were only while on the steroid, but we had a lot of other stuff going on.

Oops, sorry, I didn't address the autism part. Dr.L did not discuss steroids with us, other than to note that Allie responded well to them. As far as the autism, she just said like any other kid, medical needs should be addressed. I know that sounds obvious, but if your experiences w/ doctors has been like mine-most don't seem to understand that!

Prednisone is a different kind of steroid than athletes use.

Steroid suppresses the immune response- so slows down the making of those auto-antibodies. IVIG is donor IgG, so is supposed to give you a "normal" immune response. (I think)

We have only done a 5 day w/ no taper. We were on full dose Keflex at the time. We saw immediate improvement the day after the 1st dose. But by day 5, she seemed to be getting sick.(sinus) A few days later, she started her 1st ever period, and a few days after that had dental surgery (supposed to be for a cavity, but had abcessed), then got really ill- w/ fever and everything- turns out she was cutting all 4 12 year molars (at age 15). The month of October-the steroid was the last week of Sept.-She suddenly seemed to physically mature. It was like the steroid had hit a switch for suppressed maturation. Could have been coincidental- but she had barely any development prior- AA cup, straight hips (no 12 year molars)-then ZOINK-in 1 month she's suddenly a young woman! She didn't have her 2nd period until the end of Dec.-3 months later. The teething seemed to have caused an exacerbation-and she didn't start to recover until the beginning of Dec. when we did the rifampin/augmenten. But, the steroid made a huge difference as far as behavior for the few days she was on it!

Wanted to remind everyone, because I just had to go look it up myself, that Swedo used plasma exchange (PEX) in her study.

Lynn, I was using PEX to mean plasmapheresis+IVIG (more or less)- filtering antibodies out and adding donor antibodies back in. But, I didn't know that plasmapheresis replaced plasma w/ albumen. I thought it just filtered antibodies from blood and then put that blood back into the body.

Aww gee, Michele, its sure time for your little guy to catch a break.

Yes, My daughter has low IgG. But, I think the reason for not doing PEX was more because she thought my daughter would pull out the line. I think she's got a point there- when we contemplated PEX, this was one of our concerns-also, getting our daughter to stay on the bed while the procedure is in progress. We'll have the same challenges with IVIG, I suppose, but we'll deal with it. I think to a certain extent, the treatment for PANDAS is a bit experimental and it gets shaped as more is learned and more experience is gained. There isn't a standardized protocol. I actually appreciate the lack of "checklist" here. My daughter is wildly atypical and doc who we have seen that do the whole protocol checklist, cannot place her- so they don't know what to do, and do nothing. One of the things I liked about Dr. L is that she considered what would work for THIS child, not what works for THESE kids. My experience with DAN doctors has been the opposite- more a lets try what works with these kids-it can't hurt to try it scenario. What is known about PANDAS is that there is an immune problem, but I don't think its necessarily a matter of over or under active immune system. First off, Science doesn't have a comprehensive understanding of the immune system, or autoimmunity. I know for us, we cannot wait for the research to be completed. My daughter needs help years ago...So, I want to try what may work, what makes sense to try based on the information we do have. We know she has abnormally high anti-D2 antibodies (it makes sense to me to remove them if we can). We know her antibodies are low. We suspect her immune regulation is poor- its suppose to knock out these rogue antibodies that are interacting w/ self tissue. So, if her own system is not working properly, it makes sense (to me), to give her immune system components from other people. I want science to keep trying to find out why this happened to my daughter and to learn how to prevent this happening to others and more certain treatments for when it does happen-but, my daughter can't wait for that to happen. The ball was dropped on PANDAS research- but the study that was done on PEX/IVIG did show that they were beneficial treatment for PANDAS. But the slice of PANDAS that was looked at was narrow- did not include a wide variety of PANDAS kids, and I know that my daughter certainly would not have qualified for that study. Mostly, I think there needs to be a balance in medicine, between the art and science. I think its skewed right now in the direction of science. Doctors hesitate to try things that they believe may help a patient because it hasn't been proven yet in the laboratory. I think there needs to be more room for physician discretion so that I don't have to run half way around the world to get help for my daughter.

The pattern of being able to know strep would be positive just based on behavior, CamK 242% (although she did say she couldn't base treatment on that alone, as they are uncertain what it really means), anti-D2 antibodies (clearly, high anti-neuronal antibodies should not be there!), positive behavioral response to abx and steroids, and she felt based on the low IgG it would be worth trying IVIG.

I think what was happening here, is that Dr. L was processing a lot of information at the same time and was kinda thinking out loud...trying to figure out if my daughter really has PANDAS or not. My daughter's case is less obvious than most and she is very difficult to examine (though, I have to say Dr. L was able to deduce much more than ANY of the many specialists we've seen, just by careful observation). So, if her experience is mostly with overactive immune PANDAS, then her experience would be that yeast isn't usually a problem, and I don't know how many parents are actually reporting yeast issues to her, since they are mainly seeing her for strep isssues, you know? I hope nobody thinks I'm trying to nit-pick on Dr.L or call her expertise into question...I'm very impressed with her and so glad to have had the opportunity of her help.

Oh, I wasn't trying to refute anything, just telling what happened with us...and I knew you weren't saying its that way for everybody. My daughter used to be constantly ill w/ ear infections, sinus infections- from about age 2-10. When we discovered the strep (the 1st time she was ever tested) at age 10 and started treating pretty regularly with antibiotics (because the strep kept coming back), then she seldom got ill anymore. We ended up at the immunologist because we (her ped and I) wondered why she was not able to get rid of the strep, even w/ antibiotics, when her immune system should have been able to get rid of it on its own. But, I have to say, because of the autism dx, my daughter got really crappy medical care...amazing how doctors would not even examine/treat for regular childhood stuff. We had some pretty weird crap happening that was dismissed as "normal for autism". An insurance change when she was 10 years old forced us to switch doctors and we happened upon our current pediatrician-who has been wonderful.

Just my own personal theory on the vaccine connection...most vaccines contain adjuvant to provoke an immune response...if you are exposed to more pathogens than the vaccine at that time or have a concurrent infection, you are likely to provoke an irregular response to the natural pathogens, which have not been weakened or rendered unable to reproduce like the vaccine pathogens. This is the product of my own ponderings, so take it for what its worth....($0.02).

I think the not splitting means only that splitting the tablet to take 1/2 a dose is not okay- but splitting it and taking both halves at the same time for ease of swallowing is okay. Usually w/ timed release medication, the active ingredients are encased in coatings that dissolve at different rates of time. So, splitting would mess that up, unless you take all at the same time.

My daughter has had confirmed, cultured vag. yeast...so I know it wasn't just us thinking that. But then, she's got low IgG, IgA. But what is puzzling to me (also) is how her immune system responds poorly- making too few antibodies, yet makes enough to see a dramatic auto-antibody problem.