peglem

Allie had chronic infections (symptomatic ones) from infancy to say, 10yo or so...but, w/ the autism dx doctors dismissed it as allergies or part of her autism. They occasionally gave her a course of abx. At age 10 we got a physician who was willing to swab for strep and investigate medically. Once he found the strep, she was pretty much on abx all the time- but only when she tested + for strep (which was all the time). By then, she was really really bad off- lost what speech she had managed to develop between severe exacerbations....oh, so many things she used to be able to do but couldn't by that time. She was a chronic strep carrier, even after T&A. Now- She does not hold protective immunity to pneumovax (and it took 2 vaxes to see a rise in those titers), She falls far below normal range for both IgA and IgE, total IgG is well below normal range, w/ IgG4 being particularly low. I'm not clear on the difference between actual infection and carriage, other than carriage is asymptomatic, but is that because the symptoms are a sign of immune response and the immune response is poor in carriage?

From here: http://www.individual-health-plans.com/ppoplan.htm So it sounds like it will be covered to some extent- but you'll end up paying more than usual. Of course this is not specific to your plan. How about instead of asking pre approval, ask how much of the cost they will cover?

We've got the HMO kind of UHC, maybe because you've got PPO? Does your policy restrict you to in network? Its so frustrating that you can't depend on what the phone reps say.

What are your experiences w/ IVIG when dealing w/ both PANDAS and immune deficiency? I know (according to Dr.K) high dose IVIG is supposed to reboot the immune system, so that the patient's own immune system stops making the antibody errors that cause PANDAS symptoms. And yes, I do know that hasn't exactly played out in all cases. But, does immune deficiency make a difference in IVIG recovery and need for more than one? Here's my experience so far: March '10, 1st IVIG, but very low dose- 0.47g/kg, then another of the same dosage 3 weeks later. These were prescribed on the basis of immune deficiency. They made PANDAS worse. Mid May '10, we did the 1st high dose IVIG-1.5g/kg, saw some improvement w/in 2 weeks, then did another HD in June. She is doing very well now with her worst PANDAS symptoms (rage and aggression) and did not have any difficulties w/ recovery from the 2nd. Right now, she is the healthiest that she has ever been- I can't remember her ever being this healthy. Her pediatrician said he thinks her immune system is "crap" and thinks we should continue monthly IVIG, for at least a year. I guess I'm willing to do that, but really would like to hear about the experiences of others in the same position. Money isn't an issue here because it is covered by insurance.(before you get jealous, consider the fact that she qualifies for state secondary insurance based on the fact that she is not expected to ever be able to live independently) And I wonder at what point do we back off of IVIG and see what her own immune system can do? Also, she is IgA and IgE deficient, which is not addressed by IVIG.

Checking strep titers probably isn't necessary if you already had a confirmed strep infection by swab- But, swabbing/culturing afterwards to make sure the strep is gone is a good idea and neither titers (blood) nor culture will always come up positive. I agree with Kayanne- you need a doctor who is going to take strep seriously.

We did risperdal w/ my daughter also, and it did help at first- but with exacerbations she got worse anyway and finally she actually improved when we took her off of it. Just my opinion, but I think initially, it helped because she was finally sleeping. Also, just my opinion, its impossible to relieve stress during PANDAS exacerbation. The stress is self-generated within the compulsions and obsessions. Do you think your 12yo maybe presenting w/ a "canary" effect from exposure to your 11yo?

Prayers going up that all goes well and lots of healing of all sorts takes place!

I give motrin at the 1st sign- like if she wakes up in a funk! And I make sure to give small snacks throughout the day- hunger seems to trigger rage, so I try to make sure hunger never happens. I sometimes think that my daughter may be having blood sugar swings and the rage is the body trying to get that blood sugar back up- one of the things that happens in fight or flight is glucose dumped into blood stream to give quick energy. But, this is hard to check w/ a glucometer because getting poked sends her into F or F! I don't know anything about the chlorine issue. But, if he's out in the sun alot, be sure he's getting enough fluids- he may be reacting to dehydration, which will make you sleepy, but also he's not drinking while asleep either.

Peg if remember ds was the one whos' score came back 105...then you sent the thing about taurine..a couple of months later.... and out of curioustiy i went to check the aminos he was on and he was on taurine 2x aday for 3months and stopped 1 week prior to this draw and i will say at that point ds was at his best point since this original onset.... new test he's come back at 160....off taurine 4-5 months so my question is ...it reduces camk "activity"...can you explain that at all?? not sure what that means ??? would it have any other benefits??? i realize we are all learning, but maybe you had some other infor i tried to restart a bit ago but we had a flare and stopped it the next day or so.... started a taper about 5 days ago...seeing some relief...25-30%? last time it took 3weeks with burst,,but it was wonderful 50-70% better...maybe i'll get continued improvement as month goes on!!!!!! anyway....thinking about starting taurine again.... are you doing 1 or 2 times a day? Well, I figured if high CamKII activity is a marker for PANDAS, lowering it should help. But there was another article that I posted around the same time, about taurine helping with info processing by helping to hold something in short term memory while processing another piece of information- something that my daughter has not been good at. I suspect this is a problem in ADD as well, so that the newly processed info doesn't get the opportunity to get connected to the base that started the thought process. Dosage: I give 325mg capsules (from Kirkman's), 2 in the morning, one right after school (early afternoon) another @ 6PM, so 4 caps/day. I find it works better to space the doses a few hours apart- seems to ease her into it or something. I give the 2 in the morning because I can't give her anything while she's at school. My daughter weighs @ 115lbs. Since I started this after IVIG (albeit 2 wks after) I can't be certain if its the taurine helping or not, but she seems to be processing better than she did after the IVIG a month before- working on patterns at school (you have to conserve info while you figure out what comes next) and is getting it for the 1st time ever- asking questions (again requires conservation of an idea while other info is processed)... Looks like we're doing IVIG monthly, so I'm not going to get a chance to try something independent of that anyway.

I'd be interested in an overlay of those who are immune deficient- IgG, IgA, IgE

And level of education does not necessarily reflect level of intelligence anyway!

I think you're not supposed to give ibuprofen w/ prednisone because it thins the blood. But, tylenol is okay.

Did she exhibit this sort of behavior before IVIG? My daughter's rages have gotten much, much better since IVIG, but my arms and hands especially still bear a multitude of scars from her past life, so I understand how difficult this is. We do have a script for valium, as needed for my daughter. She still does a bit of SIB, but not nearly as bad as it used to be. But, sometimes, I give valerian root instead of valium and it does help as well. The other thing I have recently been trying (because I read a study that it lowers CamKII activity) is taurine. I think that is helping as well. My daughter is almost 1 month out from her 2nd HD IVIG- still using ibuprofen, still using valium (although much less than pre IVIG). We're scheduled for another one this Thurs & Friday. I don't know of any psych meds that would help. None of them helped my daughter, and we've tried a ot of them. At this point in your daughter's care, they would probably make it difficult to see what's going on with her. My daughter gets horrible, horrible yeast from augmentin- but I always know, because it shows up vaginally. Don't know how those w/ boys figure it out! We use diflucan for that, but diflucan does create some difficult behaviors for about 24 hours. She's on zith most of the time, which does not seem to cause the yeasties nearly as much! I wonder if prednisone might help? Oh, I just remembered- the other thing that seems to really help is cod liver oil. Once a week I give her 100% of the RDA, then the rest of the week, just 50%. CLO can get toxic if you overdo it, because it builds up- the body does not flush excess.

Melanie, I just don't understand. If this Dr.J thinks this is inflammation related, why does she not give anti-inflammatory doses of IVIG?

Please, before you go the psychiatric route, rule out PANDAS. (Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep) I'm not a doctor either, but it sounds like OCD to me as well. Here is a list of obsessions and compulsions compiled by parents on the PANDAS/PITAND board: http://www.latitudes.org/forums/index.php?...ic=6153&hl= Many parents there are (unfortunately) very familiar with what OCD looks like in a young child and all of them are very, very helpful if you have any questions.

Do a forum search for minocycline and you'll find some previous threads about it. It seems to have a high incidence of side effects. Allie's never been on it, and when I've suggested it to her docs they've been too cautious to give it a try.

I would think that if abx can affect the pill (female hormones) it could also affect your cycle.

My understanding is that IgM is only elevated on 1st contact w/ microbe, before immune memory is formed. Subsequent exposure only gives a rise in IgG. Anybody know if that is correct? I don't know enough about omnicef to know if its a good mycoP abx or not. But, you need an intracellular abx for myco.

My pediatrician tells me that he's treated 5 cases of PANDAS since learning about it from Allie (so, roughly, 1 case per month), and I know there are several cases being treated out of our immunologist's office, but I don't know who these people are.

During an exacerbation, our symptoms (not tics) were greatly influenced by the following factors: tiredness, food especially protein, needing use the bathroom, and exposure to stressful situations or triggers. We charted it for a long time. We had morning & evening issues - we tried using food - a combination of protein and carb. Peanut butter and cracker were very effective, as was Kashi Crunch cereal. In the worst of times, I would be awake before her, and when she opened her eyes, I handed her a very small portion of food (literally a bite or two, nothing overwhelming like a plate of food). I also went to about 15 mini meals a day to keep her even. I am not kidding. This did really help - it did not cure the issue, but did level things out a lot. We did testing for blood sugar, etc, but nothing ever came up. It seemed to be something that did not show up on tests, but you cannot convince me that there was a chemical issue going on at some level. I was fanatic about bedtime too, as if she lost an hour or two of sleep, the next day was *^&*. Now, she can stay up without any real issue, although I am still too nervous to let much slip here even in the summertime. Meg's mom- we have the same thing here w/ food. It's a problem w/ school (though, those teachers who listen to me get good results). I find if I feed her every 1/2 hour to 45mins, she does much, much better throughout the day. She never eats meals. Also, I find the triggers you listed are exactly the same for us here.

Threads you should read: http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.latitudes.org/forums/index.php?showtopic=6266 And this one is a diagnosis/treatment flowchart: http://www.latitudes.org/forums/index.php?showtopic=6688

Well, I think it could be elevated due to exposure from your kids- but I'd treat anyway- better safe than sorry, and the treatment is pretty low risk. I see no downside to treating, and no upside to not treating.

Last year we had actually seen the endo, because Allie was just not gaining weight, though she was getting taller. She was unhealthy looking thin, w/ eating issues her whole life. She did start to gain w/ abx treatment, really, prior to the steroid burst at the beginning of last October, she was still pretty scrawny. (yet, unbelievably strong!) The steroid seemed to jumpstart puberty! At age 10, she had started some of those early signs of puberty (breast buds, a little pubic hair)...but for 5 years it stayed just that way. The 5 days of steroid really made puberty occur overnight (well, maybe it was a few weeks)...Her body VERY quickly became womanly! But, she is very "buff"-muscular and fit...gaining weight, yes, but now she looks healthy instead of emaciated, not at all overweight.

Okay, here: http://www.ncbi.nlm.nih.gov/pubmed/19883419 Bolding mine. Sorry, could only get the abstract, but clearly states that low dose is proinflammatory, high dose is anti inflammatory. There are more articles posted on this thread: http://www.latitudes.org/forums/index.php?...matory&st=0

So glad to hear your daughter is doing good! I've been wondering how things were going for you guys.