peglem

I don't think strep has been ruled out...You can have anal strep and vaginal strep as well. (these types generally do not cause ASO titer increases) Furthermore there are a few parents on this board who saw behavioral exacerbations when their PANDAS children were only exposed to strep (from an asymptomatic sibling who tested positive). Please do not base treatment on titer levels. They are only indicative, if elevated, of a past strep infection. Most doctors do not know how to interpret ASO/AntiDnase results. If your child improved dramatically on ABX- why not continue the abx for longer- to prevent flares from exposure? It certainly safer than psych meds.

My daughter has seconday insurance from the state that should pick up all remaining cost....so I am blessed there! I have not tried submitting for PEX or IVIG- but UHC does have this document that says IVIG has been proven effective in treating PANDAS: https://www.unitedhealthcareonline.com/b2c/...ulin_(IVIG).htm from there, bolding mine

Some of you may know that I have an upcoming appt. with Dr. Latimer in January. I just got a letter from UHC that they will cover the office visits with her at regular, in network rates!!!! This is because Allie was referred by a local rheumatologist who said he does not have the expertise to treat...so, they don't have an in network provider who can provide the needed expertise. Yea!

ASO titers are not a test for PANDAS. Elevated titers indicate there has been a strep infection recently, but you already had a positive culture-so you knew that. Here is a post on ASO titers: http://www.latitudes.org/forums/index.php?showtopic=3756 Antibiotics (abx) do not treat titers- they treat strep. The ASO titer is an antibody to a strepA exotoxin-it rises (sometimes, not always) @ 4-8 weeks after a strep infection, so high ASO does not mean a current infection-but also does not mean that there is no current infection. The reason abx are given for PANDAS is to treat and/or prevent strep infections. What kind of treatment was this? I suggest you read these 2 posts to get more info about what you're dealing with here- PANDAS can get VERY confusing. This can help you get it sorted out. http://www.latitudes.org/forums/index.php?showtopic=6128 and http://www.latitudes.org/forums/index.php?showtopic=6142 Ouch! A concussion on top of all this? And a tonsillectomy? Sorry you're dealing with so much...keep us posted and hope you find lots of help here!

I don't know what Flor-stor is, but the yeast problems you're hearing about are most likely from yeast overgrowth (of the candidal variety). A yeast product that I use is S. boulardii, which I've not found in any stores locally, but buy from Kirkman's. But I also give my daughter prescription antifungals, which kill the boulardii, so timing is everything! I do give a OTC probiotic-also want to give a few hours later than ABX.

Found on PubMed- http://www.ncbi.nlm.nih.gov/pubmed/1612651...p;ordinalpos=37 Infection, vaccines and other environmental triggers of autoimmunity. Molina V, Shoenfeld Y. Department of Medicine B and The Center for Autoimmune Diseases, Sheba Medical Center, Tel-Hashomer, Israel. excerpt: I can't access the full text, but would love to see the bibliography for this article

Michael, Are you able to see Dr. trifiletti? Found this on PubMed, bolding mine: I know you had pediatric onset, but sounds like he may be at least a little familiar with the adult variant.

I took the link from that page to http://pandasfoundation.org/for-doctors.html Interesting that the "for doctors" section has a link to an article about the mouse model study, but not the study! BUT, the linked article does mention Swedo's success with plasmapheresis and IVIG....so, okay!

I watched it here: http://www.bonniehunt.com/

I wasn't trying to be critical, Vickie, just trying to understand how the study will work. I don't know anything about Dr. Murphy, except what I've read on this board and all that has been positive. Still, I don't see how this study can be successful, but I'm no scientist.

We just recently had my daughter in for a yeast infection (it was cultured and was confirmed to be yeast only), the dr. mentioned that girls are more susceptible to yeast just prior to a period. My daughter had only had one period, 2 months ago, so we had no idea if she was pre-period or not. (I guess not!) Anyway, I would think its a yeast infection, if she had both the antibiotic and her cycle as factors.

Its happened to us!

I'm glad Dr. Murphy is being so careful. But I just don't see how this is going to be a successful study if all the placebo kids will be kids who don't need abx. Doesn't this type of study require that the test group and the control are made up of pretty much the same "types"? Y'know, matched for age gender and symptomology, severity? Isn't this why Swedo ended up testing one abx treatment against another?

My honest opinion is that its not normal, but normal is relative! But, its only a problem if it is interfering significantly with his being able to do other things-If its not getting in the way of his schoolwork or functioning at home then its not such a bad thing. It may even work to his advantage. People who have accomplished really great things seem to have this ability to be all consumed by their passions. This drive could serve him well in life! In the mouse model paper, if I'm remembering right, it was pointed out, that in some ways the PANDAS mice had an edge over the "normal" ones, and that edge was a kind of hyperfocus (or obsession) on reaching goals.

This is just my gut reaction-I'll try to find something more helpful w/ a little time. The social anxiety really seems to be interfering with her getting the help she needs. The poor kid has been through so much already, and now, when you're finally seeing the light of day....its like cleaning up after a tornado, eh? First of all, I understand limited equipment and what not, but if the other students had the opportunity to use the alphasmart as well, it would lose its stigma. I went to a seminar in Sept of '08, about integrating sped in the regular classroom, and really, it was all about giving all students access to the same supports the sped students had (because, really most of these things are helpful for all students). I know there is a way for the resource teacher to integrate her instruction into the regular classroom- but again, that would single your daughter out. Have you ever looked into Montessori schools? I think they individualize education, so that everyone is working on the same concepts differently. As far as the writing issues-does she get OT? Using a slant board and wrist support, things like that can sometimes help, but a good OT would know what specifically might help. Another thing that might help is to have her go ahead and do the handwritten assignments at school, but bring home written work so she can type it before turning it in. Having a very understanding teacher is key to all this- if they think it is a bunch of hogwash and you're just babying her-they'll do the paperwork to make it look like they are complying, but won't help at all. The teacher's attitude and acceptance of differences (and ALL kids have them) in learning can go a long way in relieving anxiety for those who need extra or special help. By the same token-a teacher's attitude can make things a lot worse as well, if they expect that all kids will learn the same things in the same way. Anybody who has gone through the public education system knows there are certain teachers who somehow manage to destroy student's thirst for learning.

yay!

The school nurse is not qualified to make this determination. Utterly ridiculous!

We've never flown before, but what we are going to use is diazepam, which we have used for dental appointments and presurgery (T&A). So we know somewhat, what dose she can tolerate and how high we can go. She also has had an "as needed" script for this for several years now, only at a lower dose. I believe diazepam is the generic of valium.

That sounds so beautiful that it went away like that- must seem so miraculous! This is the 1st time in years and years that I have been able to feel hopeful about helping my daughter...and yet, still don't want to hope too much. I'm really just hoping she'll regain some control over her body so that she can actually benefit from therapy. We'll still have a lot of work to do! Its hard to catch on tape because it happens so out of nowhere, but should be easier now she's over the stripping off her clothes, at least temporarily. I didn't want to tape it in the buff, y'know!

What if you can't get your child to hold arms straight out or up, with eyes closed? Everything I see on youtube is very exaggerated chorea. Does anybody have examples of chorea during real life, as opposed to a test situation. I'm thinking that I'll try to get some of my daughters "moves" on video before we go see dr.L- nobody has ever given a name to what they are- but many happen when she attempts to initiate a purposeful movement. She's okay with walking and running- But when she lost her words- every time she tried to say something it would come out puh, puh, puh. She was having trouble producing bi-labials at the time, so at 1st I thought she was practicing her "p" sound. When that went away, there was no more words, except for every once in awhile, she has a really good day and we get to hear a few words. Its the same with fine motor- when she tries to write or draw, it starts out right in the first nanosecond-but becomes a back and forth "scritchy" movement instead. A lifetime of therapy has not improved any of this. Is THAT chorea or some other movement disorder? And as far as gross motor- she can't pedal a bicycle or even throw a ball- but you should see this very rhythmic, crazy dance she does (maniacally)-I know she doesn't have the motor planning skills to do it on purpose- so is that like a complex tic? Is it chorea? This one doesn't happen when she's trying for purposeful movement- just bursts out of her.

Oh, I'm so glad you told me that! I've been focusing so much on how to get her there, but had given some fleeting thought to where we would stay and how would I know what hotels are close to the office. Its been so long since I've driven in winter weather (we panic in rain down here!) that I really wanted to minimize driving, especially in an unknown area. And thanks for the compliment, but I would not be able to fight without everybody here. I swear, doctors think I'm so smart and knowledgable- but almost everything I know came from here! I pass all the research on to her pediatrician- who is eating it up like the best treat he ever had! His help and support has been amazing as well (he's our angel doctor!)

I was told by UHC that I can see any in network provider in the country and be covered. You can go to myuhc and find out what doctors are in network.

My daughter had never been tested or dx'd with strep before age 10, because nobody ever bothered to check until I requested it. But, though those 1st 10 years had no DOCUMENTED cases of strep, I know that she did have strep, because in hindsight the "streppy" behaviors had been there. So, documented schmocumented (I always like to say ), it doesn't mean there never was one. So it doesn't rule out PANDAS.

Well, what I was thinking is that if any of those numbers were rather elevated, that might skew things more towards PANDAS. But, these scores look pretty tame. Given the history with illness- it might be a goods idea to have the immune systems checked, but doesn't chemo reduce immune function? Well, my daughter is severely autistic-her dr. and I think because of PANDAS. What I expect after treatment for PANDAS (if that ever happens!) is that she will still be severely autistic, but perhaps regain some of the things that have been lost (like speech function, and some motor skills). But also, I think she will be able to benefit from therapy and with time become more functional. Also, I expect the aggression and self injury that we see so much in exacerbations to be greatly reduced. It has been hard to sort out what is lack of development and what is PANDAS based (and in a way, its all PANDAS based), but I would think the "streppy" behaviors (markers to get her checked for strep) would diminish with PANDAS treatment, and in the final analysis- those are the very things that are interfering with her learning and functioning. I guess I went through all that so you can see the thought process i went through to decide whether to pursue the PANDAS angle or not. I think your friend will need to try to sort things out as far as deciding what to do.

I called these people this morning and they were very nice and helpful! I explained that my child has an anxiety disorder, and although she would be on a sedative, we still were not certain that she would not freak out mid flight. One of the things they said (because my daughter is apt to look drunk and disoriented w/ the sedative) is to get a note from her doctor stating that she will be able to complete the flight without needing medical intervention. Apparently the airlines can use their own discretion in deciding if a person is unfit for travel, and if they feel a traveler may become a medical emergency in air, they can refuse to transport. I'm not sure what kind of a reaction you get from your son when he is distressed, or how your son may appear to others when sedated- but this might be something you want to do. My biggest fear is that my daughter will freak out and they'll land at the nearest airport and put us off the plane...