peglem

No, that has not been ruled out. I think it is certainly chorea, but there is no evidence of rheumatic fever (heart involvement). Is there a way to rule out sydenham's?

We just got back from IVIG-today. Her last was 3 weeks prior. We're on day5 of the clinda...not seeing any of those symptoms. I'm assuming if she had deep bone pain in the thigh, there would be problems with walking- at least crying when she walks. What I'm seeing is that she is drinking 4-5 liters of H2O/day and seems very sensitive to the heat. My hub will not travel that far and is leary about paying anymore out of pocket for anything. I've got him to promise that we can see a NPMD (not sure how to spell naturalpathic) that was recommended by our pediatrician...which I'll set up as soon as we get things settled with the rheumy. She is using her hands a bit now- can sometimes do finger foods. But, often when she brings the food to her mouth, her neck/head jerks and she indicates that she wants us to feed her instead. She's using her thumbs to operate the dvd player and push buttons on her aug. comm,-but, I'm noticing that it twitches up and down as she tries to press, and she's mostly using her left hand, when she is normally right handed. Still seeing her arms float straight up in the air sometimes, hang there for a few moments and then float back down. I'm conflicted about sending her to school Monday. She was on spring break this week, but the week prior, her teacher had wondered if she was stimming on her hands (as I was very very disturbed about what was happening) and I'm afraid her teacher will think she is refusing to use her hands. Teacher has a very, very strong autism filter! I'll try to explain as best I can, i guess. Her OCD is way, way amped up.

Hummmph! This angers me. I don't know how many, many times I've read (in vaccine schedule notices, etc.) that all studies have been done to prove that vaccines do not cause autism. I think the studies that have been done were skewed and just pretenses to defend vaccines. Am i really supposed to trust that they'll look at this objectively?

We saw Dr.L once over a year ago...5000 mile trip. She did not really dx her- looked at immune labs and recommended she be treated based on those. The pediatrician is our guy here that has been fighting to figure this out. He has persuaded the immunologist to get on board (w/ doc L's recommendation), but its been hard to get anybody to take off their autism blinders long enough to help us figure it our. Hub is tired of shelling out money for "extras" beyond insurance coverage, especially since we've gotten very little return for our money, so I don't think a lyme doc is a viable solution. Even if the test turns out negative though, what will we do? She got strep while on a pretty decent dose of zith and had done 8 days of Keflex in addition to the zith just prior to the + test. Something is very wrong!

I talked to the rheumy today. Still waiting on a few lab tests, but negative for lupus, RA, and everything, except parvovirus- but only raised IgG (IgM neg) on that so she's thinking past infection. She wants to wait and see how the clindamycin pans out. If she tests positive for strep 2 days after finishing clinda, it sounds like Allie will definitely be considered a strep carrier, and it will be recommended (by the infectious disease guy) to not treat strep.

They did not do a susceptibility test. The swab was done at the last minute, because when they told me they were going to just run the blood test for strep I told them she usually doesn't get a rise in ASO and anyway, wouldn't the IVIG interfere w/ validity? So they did the swab and the staff ped said, "as soon as her strep test comes back negative, you can leave." My hub said, "What if it comes up positive?" (that never crossed my mind.) He said they'd rx abx in that case. I was so shell shocked when it came positive...didn't even think to ask for susceptibility testing. Got the feeling that the staff ped disapproved of the chronic zith administration...did not press it.

So, high thyroid speeds metabolism way up, right? (rhetorical question) So, is it possible that high thyroid could cause you to metabolize abx so quickly that it would provide little or no help against bacteria? Is it possible that it could cause rapid elimination of immunoglobulins (from say, IVIG)? Could that explain why my daughter tested positive for strep, despite being on 2 antibiotics and having had recent IVIG? I'm even sounding crazy to myself now!

Tonsils/adenoids removed @ 4years ago. 1 bicillan shot 5 years ago- tested positive again 10 days later and no way I can do this even monthly w/o me and medical staff sustaining serious injury! It would be nice if I could talk with them about culturing for sensitivity...Just, my child has obvious "autism symptoms", is "just a strep carrier" who is not really suffering any problems from the strep. Its crazy mom who just can't accept that her daughter has a brain problem that has nothing to do with any microbe or infection and...we're going to give her a broad spectrum (no pun intended, but now I think of it... ) abx anyway so what's the use? I wonder if this is a new strep, or the old one never went away. I'm hopeful that this new rheumy we saw at the hospital will actually help. She seemed to look at my daughter w/o an autism filter. The things other people have always called stims or seen as features of autism, she saw as neurological movement disorders...So refreshing!

I don't know, hub's family has history of thyroid problems, but hypo, not hyper. But, I wonder, too, if she's been having a lot of fluctuations. The "little furnace" thing seems to surface w/ PANDAS flares, and I bet it explains those times when she will not keep clothing/blankets on. I need to back away and digest for a bit. I've gone on the research rampage here and have this ginormous mix of different info swirling inside my head. Ultimately, I'm wondering how the tests the rheumy did turned out, and if she'll have any answers for us.

Allie tested with high thyroid hormones last week. Hyperthyroid throws your body into super metabolism-she was burning through her food like crazy-eating a lot and starving for more every 1/2 hour. She'd have a burst of energy after eating and then be wiped out and lethargic. She was radiating heat like a furnace, but didn't have a fever. But, hands and feet were like ice. By Sunday evening, when they tested her thyroid- it was normal. They said sometimes illness causes the thyroid to go crazy like that and then return to normal.

Yup...this reminds me of an episode of House. The patient had (you know, 'cause House is always doing crazy things) radition (chemo.?) to destroy her bone marrow (cause they thought it was some kind of cancer?) but it turned out to be an infection. Well, too bad, the patient didn't make it b/c antibiotics don't work without a functioning immune system. Of course you would think the IVIG would help with the immune issues. I also believe that strep can "hide out" like Lyme...evading the immune system and antibiotics. I sure hope Clindamycin helps. Are you sure there are no carriers in the household? Okay, now I'm thinking Allie has a bone marrow problem. The lupus possibility also makes my hub think of HOUSE- House says its never lupus. Clinda does seem to be helping a bit. She's using her hands a little today- but hand muscles seem fatigued after a few minutes use. Sure would be nice if she had a voice in all this. I wonder if she knew she had strep? That was the most cooperative I've ever seen her for a throat swab. Last week she had some problems with swallowing- it looked like it was difficult for her, but I couldn't tell if it was sore or just a motor problem. I was just reading about sydenham's chorea- its associated with hyperthyroidism and lupus.

Are you serious? Never seen one over 300!

Right? I find myself being so, so cautious about what I say to docs I don't know. Makes it so hard to get to the meat of the situation when you're so afraid they are going to roll their eyes and and disregard everything you say because they've already decided you're a nut job. At the hospital this week end, the docs we saw were colleagues of a butthead rheumy we saw at the same hospital...they kept asking about what he said, and why this, why that...who is following her for her PANDAS? Her pediatrician! Because we cannot get any fricken help from specialists who stick to protocol and will not do anything if there is not a protocol for it so are willing to just pretend that my child's suffering is a figment of her deluded mommy's internet enhanced immagination! Don't get me started....oops! Too late!

We've not done the XR augmentin. Regular augmentin causes huge yeasties though, so we've kind of avoided it. Had to google HSP. I don't think that fits- no abdominal probs and her rash was more like a lupus rash (which is something that is being checked).

Thank you for that bit of hope!

Kim, I tried to PM you. It said you can't recieve messages. Is PM not working right now?

Allie has been on 500mg of zith every other day, for a long time- over a year. She has been getting IVIG every 3 to 4 weeks for a year. She'd had full dose keflex added to her zith for 8 days (we stopped when she got labs back Friday showing high thyroid, thinking that was causing the problem). On Monday she tested positive for strep. How in the heck can that be???? And the problem she was having that prompted adding the keflex was that her hands and arms were swollen and she could not use her hands. The rheumy at the hospital thought it looked like chorea, and that seems to be improving some after 2 days of clindamycin. But, what kind of demon strep is this, that all that abx and immune treatment was not enough to keep it at bay? She didn't improve w/ prednisone, so maybe the pred, assuming she had strep back then (a week and 1/2) just helped the strep gain momentum? Still it was bad enough before the prednisone to cause incapacitating chorea. I'm so confused... Any ideas? And what next?

Wow, Kim, what a roller coaster ride! As I read, I kept switching from happy for you to concerned and ohno! Prayers that you see continued improvements with no more of those backward steps. Asking for "someone to talk to" is HUGE!

My daughter is an unusual case, so I think "normal" pandas would have a different experience. But we got pre-approval for coverage from our insurance (UHC)because our daughter was referred by a local specialist. I filed the paperwork myself and we were reimbursed everything but the $35 copay. I probably could have gotten the $35 reimbursed by her secondary insurance if I'd really fought for it. They denied it on pre-approval.

Peglem--your box is full--I will try again later. Okay, der! Asking for PMs when my box is full. I made some room.

I know many of you from this thread are no longer here, but I'm reaching out for spiritual support from any who can offer it. I'm really having trouble keeping the faith here. Please PM me if you can help.

I really like the idea. Just looking at your list there we score like 20+. Is there anything like this out there? This smacks of something doc T would come up with.

Thank you. Yes, my child is "dentally delayed" and has been working on cutting her 12 year molars for over a year now. She has a dental appt. next month, but would not surprise me a bit if this was tooth related. Its a shame that dentistry is so alienated from the rest of medicine...like the mouth has nothing to do with the rest of the body at large!

Well, I'm hopeful that this new rheumy will help. She looked at my daughter w/o the autism filter. My daughter flapped her hands while she was there, something she hasn't done in years, but is "typical" for autism. She said lots of times that is how children attempt to loosen up their muscles if they're cramping. Makes a lot more sense to me than "stimming". The hospital pediatrician has a background in infectious disease (he said), but I don't think we'll get help there- strep carriage...blah, blah, blah. PCR testing? I'm not familiar with that...what is it?