peglem

http://www.ncbi.nlm.nih.gov/pubmed/20384496

Allie took a bit of a dip on Friday and Saturday. On sunday her gma (who lives with us) was dx'd w/ walking pneumonia. They didn't identify mycop as the culprit-but I was just thinking... So has anybody ever seen the canary effect w/ myco? Allie has never been tested for myco, mostly because the treatment she's been getting would treat for that anyway.

Sorry you had this disappointing experience! But, hey, you gave it a shot and now you know another place to not go for help!

Out here in AZ, I start voting at 10:00 PM- the beginning of the voting day!

I think its absolutely critical that that dang NIMH page gets updated!!!! Back when we 1st saw this pediatrician and I 1st approached him about PANDAS, he was very willing to pursue it....but that recommend to NOT do prophylactic abx, or IVIG, and treat the OCD psychiatrically was all he had to go on...til I found y'all and began bringing him articles. Although, he did read Swedo's studies on his own, but could not get the immuno to do IVIG. Doctor's who are willing to help should get some up-to-date info from a reputable source like the NIMH, instead of that crap they're serving up right now!

I didn't, but somebody else did. I didn't want to w/o his permission, as I suspect he's taken some flack over treating my daughter "experimentally." (How's that for irony- they won't help her, but they'll sure harass the doctor who does!) He did tell me though in our phone conversation tonight to go ahead and refer people. He doesn't like the idea that there's so many kids out there who aren't getting the help they need and he knows now how hard it is for parents to find a doctor who will help.

Thank you for the kind words. But, I really don't feel like I've done anything special, unless hanging on for dear life as your world crumbles around you is special. But, I've done nothing on my own. I've been helped by cyber friends (here mostly), and God seems to have done the rest. Honestly, my greatest fear has been dying w/o Allie being okay w/o me... What does it say about the state of medicine in our society that a little suffering girl was turned away by so many physicians for even routine medical care? Well, not exactly turned away...just not treated or properly examined. In the final analysis, w/o this pediatrician, we'd be nowhere!

I just had to bold and re-size that part as I think it is the key to all this! A doctor who has the humility to say "I don't know, tell me more" instead of "I've never heard of it so it doesn't exist" is putting the patient above their own ego and will likely do whatever they can to help!

I would think the amount of anxiety attached to it might be a clue as to whether he thinks these things are real or is just playing a game.

He was just calling to let me know that he'd just treated a 6 year old girl for PANDAS, and he was so thrilled at her recovery. He said it was like a miracle! When she came to him, she was completely dysfunctional w/ sudden onset OCD, and of course. her parents were devastated w/ worry. He just wanted to let me know that he's been able to help several children that he thinks otherwise would have had very poor psychiatric prognosis, because of his experience w/ my daughter and he's so thrilled that he's able to do something to help these kids!!! He told me he was sorry that Allie has gone through so much because doctors would not try to help (we found this doc when Allie was 10) and he wished he had known what to do to help her sooner, but hoped it would be a comfort to us to know that her ordeal has served to save other children. Mostly, I think he just wanted to share the joy he felt in seeing this latest patient recover w/ somebody (me) that he knew would truly appreciate what had happened. God sure blessed us w/ this physician- and this physician has been blessed w/ my child as well!

I'm so happy for you- keep us posted as you see more good things!

i was just pondering what an extraordinary thing we've (almost) done! I don't know how many members this forum has, but we've managed to top groups that I'm sure have thousands of members! Thank you to our excellent leadership and to all of us determined ain't-gonna-let-nothing-stand-in-our-way parents!!!

Happy dancing!!!!!!!!!!!!!!!!!!!!!!!!!

When I reach a point where I see good things happening- I make no changes. My daughter will have to be stable for a very long time before I'll consider reducing abx.

Or maybe there was already an exacerbation coming on and this just gave her something to obsess over.

Then there's this: http://www.koreamed.org/SearchBasic.php?RID=628144&DT=1 But symptom tic exacerbations have to be correlated with a rise in ASO titer.

I'm trying...Here's something, but you'd need to show antibodies to the caudate nucleus proteins: http://www.springerlink.com/content/vh02u2g374460g0t/ Neuroimmune Aspects of the Pathogenesis of Tourette’s Syndrome and Experience in the Use of Immunoglobulins in Children

Any updates on this?

Thought I would bump this up for the newer crowd facing IVIG. This kit is wonderful- my daughter and I IV'd every stuffed toy in the house and it really helped her handle the procedure!

I've so been there too. There was a period of several years where I could not admire other people's babies...it just hurt too much. Its not that I was jealous or begrudged anyone their healthy kids. Heck, I was happy for them! It just made me so sad for me. I don't remember when that changed, and I don't know why. Honestly, this thing has made me so reclusive, I seldom see anybody else's kids anyway!

what a grandma! i dont know her but i think i love her Oh, yes- my hub's mom who lives w/ us. I've told my hub if we ever split up, I get custody of his mom! When I still worked, she was the one who got up and got Allie ready for school in the mornings. But, she's getting awfully frail and when she couldn't do it any more, that's when I quit working. Allie has actually cracked a few of her ribs on occasion- she has osteoporosis. But back when Allie was so bad that I was fretting over whether to institutionalize or not- I just couldn't stand that w/ everything else she's had to endure, she might have to live separate from the only people who truly love her. G-ma said no matter what- Allie should stay with the family, even if she seriously hurts someone. It was mighty nice to have that kind of support and understanding. God, I'm sure, will bless her for giving all that love!

Ditto on the lidocaine- wish we'd began using it years ago. I don't have answers for your other questions.

Whoooohooooo!

Well, guess I'm stupid, too! Can't take dairy at the same time as zith? Never heard of that.

For those of you who don't know my daughter's history: She's 15 yo and considered to be low functioning autism, non verbal and all that- has presented w/ exorcist type rages since she was about 18 months old. We discovered chronic strep when she was 10 years old and began exploring possible PANDAS at that time. Had T&A at age 11- condition worsened. Pediatrician convinced it was PANDAS, but other than prophylactic abx and the T&A, did not know how to treat it- he did send us to immunologist w/ the hope of getting IVIG, but immuno was having none of that. But last summer we had Cunningham test done and when Dr. Angel (AKA our pediatrician) talked w/ Dr.s C and L, we finally got the ball rolling on aggressive treatment. End of November 2009, we did 10 days of rifampin/HD aumentin in an effort to clear my daughter's strep carriage and followed that up w/ 500mg zithromax every other day. That gave us a great improvement- and a new baseline for what our daughter is supposed to be like. After traveling across the country to see Dr.L and get her treatment recommendation, the immuno finally agreed to do IVIG. So the end of March (daughter is still doing very well) we did a very low dose IVIG (< .5g/kg) and she got a little worse, but not too bad. A month later we did another w/ the same dosage, and she took a huge dive back into exacerbation. Went back to immuno and got dosage increased to 1.5g/kg. But I was really freaked out about the turn of events after the second IV, so her ped gave us a week of prednisone (helped a little) and agreed to do the rifampin/aug again, but wanted to wait until after she'd had the higher dose of IVIG, so we could see 1st what the effect of that was. In mid May, we did our 1st high dose IVIG and between that and the steroid she had improved a little...still not back to our new baseline. About a week later, we did 2 weeks of rifampin/augmentin and begain to see some signs of recovery. Then a week after finishing that abx combo (we continued the 500 zith every other day) she did her second IVIG infusion. We had only a couple of rough days and then began to see more recovery type things:fewer and less intense rages that we are able to guide her out of, calmer, happier. So this week, I decided to try adding taurine to her supplements, kind of as a trial. She's 2 weeks out from her last IV and doing REALLY well. Our theory (mine and Dr.Angel's) is that PANDAS at a very early age disrupted her development, causing her autism symptoms. So we are thrilled to see her begin being a bit clingy to her parents. At 1st I wasn't sure if this was PANDAS separation anxiety or development since it was a stage of development she has not been through before- but have decided that since it came during a period of remission, and since she is becoming less anxious about it, its probably social development. She's learning again at school! And yesterday, for the 1st time ever in her whole life, she asked "why?" Those of you w/ typically developing children probably recall that stage of development where every communication included "WHY?" That happened at school...but I'm very encouraged! We've seen some turning back the pages stuff- mostly some compulsions that we haven't seen for a few years- but she's not doing them with the same manic intensity that she used to, and its almost like she's testing them to see if they have any power over her. She engages in them briefly and then walks away from them. We can talk to her about her fears now, about not letting them stop her from doing things- and she's fighting them. I'm so full of joy! I don't know why she hasn't had the regression and problems that others on here have seen. Is it the 2 IVs a month apart? The pred and rifampin? the taurine? I just know I'm not changing anything for now! This may all vanish tomorrow or next week or next month...but for now, its time to rejoice!