peglem

I think my daughter was a carrier. She had symptoms when she was younger, but was never tested for strep at that time. By the time she was tested for strep (years after symptoms went away), she was symptom free and did not have elevated titers. But she consistently had positive throat swabs 3-5days after finishing a course of abx for @ 2 years. Once on prophylactic abx we did not test as often- but when she had a bad, bad flare- then I'd bring her in and she'd test positive. I was always so sure that we were done w/ strep once we'd gone prophyl that I only tested when I'd bring her in for other things- like injuries sustained while raging! In hindsight, I should have realized!

Well, I frankly don't see my daughter ever living independently...but hopefully she'll recover enough that she can stay with family and not need "home-type" placement. On the other hand- I see no logical reason that we can not work on developing her brain in the areas that have been mis-developed, so who knows how far she can go.

In this autoimmune disease there is no evidence that brain cells/tissue is being destroyed. Just trying to help you be wrong!

If you do choose to address this formally, be sure to start by letting the teacher (or the meeting) know how much your child loves her and enjoys the class and give details about what you appreciate... You'll be more successful if this teacher knows that you recognize the good stuff she does, and she'll be more likely to cooperate if she has a reputation to live up to!

Wow! That's great! I would leave it alone. I wouldn't necessarily complete all that work he had stashed in his desk. Chances are if she didn't notice until clean-out-your-desk time, then they don't contribute to the grading. I think if you do manage to get her on his tail about these details, you could change the "happy to go to school and please her" and that might not be so good. Is the pen using in his 504? His education plan is not about what "the other kids" might want- just about what your kid needs. I wonder if he's not doing the work at school because of the pencil/hole fear thing? I'd talk to him about it. And it may be a good idea to revisit accommodations w/ a meeting that includes the psychologist.

But, also, nonverbal/autistic children have trouble getting anything treated. Maybe because its so hard to do a good examine on them? I can't tell you how many times we had my daughter at the doctor when she was young for illness. Severe sinus congestion, runny nose, cough, lots of symptoms. She generally did not get fevers. Once in awhile they did give her abx, but more often than not we were sent home after being told, "its probably just allergies. Autistic kids get that a lot." No, throat swab. Sometimes they tried to look in her ears. When we finally did allergy testing...no allergies-at all. And never any concern that this kid was ALWAYS sick. Never occurred to them that her behaviors might be because she feels like schitt all of the time! I'm going to stop now-didn't intend for this to become a rant.

Great taste! Less filling! Maybe he has inflammation causing pain? or maybe doc says pain, because that's what he/she can prescribe that med for?

Allie enjoyed this with me this morning! Thank you, I'm inspired! (bad night)

But, in PANDAS researchers think that the antibodies are not destroying cells in the basal ganglia, but only activating them. The antibodies are plugging into receptors in the neurons, causing false signaling.

We've been very happy w/ UHC. They've covered monthly IVIG for almost a year now and I've easily worked out any problems with them.

I don't know if reliable is the right word. Limited, frequently misinterpreted...those might be better terms. Those tests cannot rule out a strep problem, only can confirm one. Further, they are testing for antibodies to strep exotoxins, which are not the antibodies that cause PANDAS. There is no lab test for PANDAS. Here's a link to info about ASO titers- probably more than you wanted to know: http://www.latitudes.org/forums/index.php?showtopic=3756

Here is a recent paper that reviews the literature on PANDAS thus far. It explains the role of inflammation in PANDAS, but also offers what is known about PANDAS and I think it can give your pediatrician a better understanding of what you're dealing with. Peggy, there was no link. I am very interested in this so I hope you repost. Oh, sorry! Here: http://pandasnetwork.org/wp-content/uploads/2010/12/JrnlChildPharma-LeckmanKurlanMurphy1.pdf

Here is a recent paper that reviews the literature on PANDAS thus far. It explains the role of inflammation in PANDAS, but also offers what is known about PANDAS and I think it can give your pediatrician a better understanding of what you're dealing with.

What dose of lamictal is she on? If its a tiny dose, she may not have to taper off. I'd rather chance going off that than the zith, but zith has always been very good for us, so I'm biased.

Did you start with a "loading dose" of zith? The zpack does this, then the subsequent doses maintain levels over time. Your doc is right that zith has a long half life. I'd go for the 250/day(starting w/ a 500 loading dose) until you see symptom improvement and then drop to every other day to maintain. My pediatrician is very vigilant about liver/kidney toxicity too. I do appreciate that though. We check liver/kidney function about every 6 months just to be careful. Never had a problem there, and my daughter gets a lot more ibuprofen than 2x/day.

Its really easy to slip it in the side of the mouth around clenched teeth! And it dissolves instantly, like cotton candy- I don't think she'll be able to spit it out once its in there. It tastes slightly minty.

Its because people have taken the criteria to be a subject in Swedo's studies as diagnostic criteria.

Yes, you can go!

I keep starting to reply here, then don't because I know exactly the h3ll you're going through, but have nothing terribly useful for you. Rages are the worst! What helps a little for us is to feed snacks every 1/2 hour to hour- never let tummy get light. And go heavy on the protein. For awhile, when things were seriously bad w/ more time spent in rage than not, we used melt-in-your-mouth risperdal (M-tabs) as needed. Very easy to slip one inside her cheek when a rage started. Takes about 10 minutes to get into her system and shut off the rage. Seriously praying that things get better for you all very soon!

Peggy, I guess when someone else looks through those same glasses, it can look really different, huh? Thank you for this wonderful insight. Julie It took me 10 years of following the "expert's" advice and trying to deal with this behaviorally before I realized that my child doesn't like it when this stuff happens anymore than her caregivers do. Poor kids, trying so hard to "be good" and just never can seem to....this is a tough one on self esteem if the adults do not understand what's going on. Once I began treating this w/ understanding, validating her struggle and sort of coaching her through it- this symptom became easier for both of us to deal with.

But then in 6 months, they'll expect her to get it. They recently changed the wording on AZ's personal exemption to make it a religious exemption- my hub was uncomfortable w/ claiming that, but even though we could get a medical exemption based on monthly IVIG, I wanted the more "permanent" religious exemption, just in case IVIG is ever discontinued. And, anyway, I firmly believe God means for me to not risk my child's health.

Yes, I think I can't possibly get away! Honestly, just having dad "babysit" for a few hours (I did get to see a movie w/ my other 2 daughters last month!) is really difficult for my daughter. Maybe I'm codependent?

You know, the outside psychologist did not have a beard, but when I was called about setting up a meeting, those exact words- "he is very smart" were used. Love that video!

I agree, and if it goes untreated, it interferes w/ the child's ability to develop normal processing pathways, so that their early childhood development is messed up. PANDAS studies had only just begun when my daughter was in early childhood.

The previous school my daughter went to had a behavioral expert (master degree in it!) who called me to have a meeting with an independent psychologist (because school personnel are not allowed to recommend medicating) because they'd "been through the ABA book twice and behavioral interventions are not working." I explained that we'd run the gammut of psych meds and hadn't gotten much help there either, but wanted them to try an intervention called Relationship Development Intervention, that we had recently just begun in the home and were seeing some progress with. The behaviorist refused to use anything other than ABA because its the only thing that has been scientifically tested and found to be effective. He even sent me references to @ 325 articles on the effectiveness of ABA. (most cite about a 47% success rate- that's 53% failure rate). Ummmmm....didn't he just emphatically state that ABA is NOT effective for my child? When I pointed that out to him, he still was unwilling to try another stategy...we found another school.