peglem

There is a disclaimer about variance of coverage, depending on which policy you have...and UHC has a bajillion choices when it comes to plans. We never know when we sign up exactly what we are/are not covered for. Very frustrating! Could you elaborate? I am getting the Buy-Up plan. I don't know much more than that. Why would one PPO plan give less than another? I don't know that much about how insurance works, but it seems to me that its purposeful chaos- so you don't know what you're getting. They have different premiums for different plans and different benefits as well. Maybe they all cover the same basic procedures, I don't know. There are different out of network dealios, out of pocket...I just know that monthly statement they send every month (UHC) to "help" me manage my medical expenses are very confusing. So, no, I can't elaborate, I just assume they'll try to deny anything they can!

There is a disclaimer about variance of coverage, depending on which policy you have...and UHC has a bajillion choices when it comes to plans. We never know when we sign up exactly what we are/are not covered for. Very frustrating!

But also, if you present severe at a young age- the dx of autism is likely applied.....then NOBODY will look at anything else!

It makes a strong correlation between low IgG levels and high Aberrant Behavior Checklist scores in the more severely autistic population. They also looked at apergers group who got lower ABC scores and IgG levels were not as low as the severe group, but still lower than typical kids.

I'm so glad your post reminded me of this. Time and time again I hear about "task avoidance" at school. I'm looking at that in a new light now. Getting her through the fear is so difficult, especially since her communication is so poor. I do see her trying at times to overcome it, work through it, as I coach her.

We haven't been there yet. But good luck and God bless!

This one gives me pause, because although total IgG is below normal range for my child, IgGs 1,2,3 are in low normal range, while IgG4 is very below normal range.

Thanks for the offer, Kim. But I've given up the mercury angle long ago...no real evidence that its a problem for my child and I'm having a difficult enough time getting doctors to take the problems we do have evidence for seriously! My honest, nothing solid to back it up, opinion is that the vaccines themselves even w/o thimerosol are messing up the immune systems of our children...They simply do not know enough about the immune system to be messing with it the way they are.

WOW!!!!! on this one! Thank you, Kim...This confirms what my pediatrician thinks about my daughters autism and the PANDAS link...and you can get the full study for free! I'm going to print it out for him...he'll appreciate the research that reinforces his opinion, especially since he's getting so little support from specialists. This is so exciting!

Great idea! How wonderful that you were able to help her feel more competent, less helpless through all of this. You're a terrific mom! Sorry about the PPSD for you... Something else that struck me about your post is that you mentioned how badly Meg WANTED to do things, even though the anxiety levels were huge. This is something that I think is largely misunderstood with our kids. People think they are having tantrums/meltdowns/rages (pick one) because they DON'T want to do something...But, i have seen this crap get in the way of things I know my child wants badly to do.

Its been my understanding (albeit from the DAN group) that blood mercury levels are not well correlated w/ body burden because mercury is very quickly taken up into body tissues. So, this study is saying that mercury affects gene expression differently in TS than in Autism?

I just know my pediatrician felt it was VERY important to give "clearance" time off of zith, and even then wanted to check liver enzymes every 6 months. I know he was just trying to make sure he doesn't cause liver damage...we've switched to augmentin, which he says he will only give for 21 days...I bet I can talk him into more if her liver checks out OK. 21 days will last until about Christmas (she's finishing a 10 day course 1st). We see Latimer on Jan 8th, so I'll talk him in to at least that much. Anyway, I think you'll be okay with the zith delay.

Zith is taken up into the tissues and has a 60hr 1/2 life, if I remember correctly. Other abx do not stay in the system as long...

There's been a lot of discussion of this over on BT MS forum.

I don't have experience with it, but wonder if its the low IgA that is causing the yeast problems? IVIG wouldn't help IgA levels. Just guessing on his thinking there. IVIG would help with low IgG1, though. Also low IgA is a risk factor for autoimmune disorders.

I think you should get immunology workups for your kids. A properly working immune system should be able to resolve yeast issues w/o intervention- IMHO.

I appreciate your work on this, and will support the effort with emails... Right now I feel unequipped to tell them anything except my own opinions...They need more than that, I need to be able to cite specific research. Thanks Buster, you're amazing!

We had this conversation w/ the ped on Wednesday. I said I thought that the strep had gone inside the epithelial cells because every time she has dental tissue damage, either cutting teeth (4 molars right now) or dental surgery- twice in her life, she's had big problems. He said its possible- that's what TB does, and they use a combo rifampin/abx to eradicate it. So that's why that combo. We're only doing 10days, then we'll drop the rifampin and go for the full strength augmentin. I'm going to get him to do another 5 days of prednisone after the 10 days (make sure BBB is closed) if this runny nose and general malaise goes away by then. We're having diarrhea with this and haven't seen that w/ an abx in a few years....at least I know we're killing some bacteria, somewhere! I still don't know if we're getting this right...time will tell. Mostly I wonder if we need to do the rifampin longer....its used for a long, long time w/ TB.

Funny...we live in AZ! Sorry, when I made that post, it took me over an hour to complete because I kept getting interrupted, w/ 7 kids, I know you understand.. What I didn't make clear, is that we had no idea what we were dealing with at the beginning....so, we were just treating +strep tests, w/o infections happening...so hard for docs to even get a peek at her throat, but I think it was seldom sore...she didn't act like it was sore. We were told by specialists that she was a carrier, but they acted like that wasn't a problem, like only full fledged infections were problematic. Until now (and I have to credit Buster for finding and sharing info on this) we haven't seriously tried to eradicate the carrier state...I thought the smaller, phrophyllactic doses would keep the strep at bay. Having to fight so hard to get PEX and/or IVIG...it has become more urgent that we get aggressive with the strep, so that if we are given the chance for that kind of treatment it isn't wasted by self exposure. I think it will be harder w/7 kids...but knowing the seriousness of the carrier state in a PANDAS kid gives you a leg up on me! Anyway, didn't want to freak you out!

My daughter is an asymptomatic carrier. We're trying to clear that right now w/ rifampin & augmentin. She's cutting molars right now, which has spawned a sinus infection- throat does not seem to be sore. We started the R&A therapy on Wednesday, she is still sick with lots of sinus drainage....Don't know yet whether that's good or bad. But past experience: We spent @ 2 years doing regular courses of Abx, testing + on rapid 2-5 days after finishing a course. Only behavioral symptoms-which is what brought me back for a test 2-5 days later. The abx would improve behavior. Once we got prophyllactic abx- We found out quickly that penV wasn't effective- + rapids while on it. tried a few more and finally zith- which was given in a way that she had"off periods...I would see behavior coming back on off days, but knew she'd be back on soon, so let it go...things were getting slowly worse, but kept thinking we were keeping it at bay. She had a +rapid on Sept. 1st, with previous dental problem. Since then she's had more dental "incidences" along with actual, symptomatic illness...which led me finally to see, because of eruptions of behavioral/illness symptoms associated w/ dental tissue damage that she probably has intracellular strep that is being released when the cells are destroyed.

Even if they would just put a disclaimer on there that further research is being done and that the info on that site reflects only preliminary research it would help.

How do we get the NIMH page updated? If I was an interviewer, I would see the NIMH as the ultimate authority and it would trump parental anecdotes.

There were times when our pediatrican (on board with PANDAS) would make a "clinical strep dx", w/o swabbing to make sure, so he could give more antibiotics...this was always shortly after finishing a course of antibiotics (2-3 days) when he thought the abx might nullify the test. He never told me that, but I observed it on several occaisions. There were also many times, though, when she would retest + 2-5 days after a course of antibiotics.

Well said, Laura.

I'm glad Voss doesn't start with "K"! Anybody know what happened w/ Swedo's study testing autistic CSF for cytokines, and treating with minocycline? Is there a lab test to show weakness/failure/malfunction of the T/B reg system? Also, it seems (though dangerous and much more invasive) the Cunningham test would be more reliable if the sample was CSF instead of blood serum. She did use CSF initially, no?