Betty04 Posted March 16, 2011 Report Share Posted March 16, 2011 I second the wondering if she should be on IV antibiotics? Hoping she starts to improve more soon! Link to comment Share on other sites More sharing options...
peglem Posted March 16, 2011 Author Report Share Posted March 16, 2011 Peg... have you seen this shirt? http://www.tvstoreonline.com/house004.html Link to comment Share on other sites More sharing options...
matis_mom Posted March 16, 2011 Report Share Posted March 16, 2011 Peg, I just read through the whole thing (just back from vacation), I'm so sorry! I have two thoughts... 1) try to get them to do a culture with sensitivities the next time she has anything. They can actually put 'the bug' in a petri dish and see which abx will work. 2) did they ever try Bicillin shots? They are painful, but they do work! My kids are getting them once a month. If they are acting up, they might get it a little earlier, and it does seem to stop things from spiraling down. It's in intra-muscular shot, and I guess the idea is you get enough concentration to actually "kill" rather than just slow down bacteria. Keep us posted! Also, does Allie have her tonsils still? If you ever get them out, insist on a culture with sensitivities. Isabel Link to comment Share on other sites More sharing options...
peglem Posted March 17, 2011 Author Report Share Posted March 17, 2011 Peg, I just read through the whole thing (just back from vacation), I'm so sorry! I have two thoughts... 1) try to get them to do a culture with sensitivities the next time she has anything. They can actually put 'the bug' in a petri dish and see which abx will work. 2) did they ever try Bicillin shots? They are painful, but they do work! My kids are getting them once a month. If they are acting up, they might get it a little earlier, and it does seem to stop things from spiraling down. It's in intra-muscular shot, and I guess the idea is you get enough concentration to actually "kill" rather than just slow down bacteria. Keep us posted! Also, does Allie have her tonsils still? If you ever get them out, insist on a culture with sensitivities. Isabel 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! Link to comment Share on other sites More sharing options...
SarahJane Posted March 17, 2011 Report Share Posted March 17, 2011 Peg, I'm so sorry you're going thru this...BUT I'm glad that Allie got good treatment at the hospital!!! I'm glad that you got someone that can see Allie and not the other A too!!! Good luck! I'm actually taking my ds(7) who is on 250mg zithromax daily for strep titers today & circulating immune complexes. Am going to get the ped to throw in an MP test too, just in case. Could be that the zith-resistant strain is circulating this season. We are 4 months post-IVIg...he was doing good & has deteriorated over the past 1.5 weeks. Of course it was slow enough for me not to put it together until BAM! it was obvious. Dang PANDAS! Link to comment Share on other sites More sharing options...
peglem Posted March 18, 2011 Author Report Share Posted March 18, 2011 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. Link to comment Share on other sites More sharing options...
butterflymom Posted March 18, 2011 Report Share Posted March 18, 2011 (edited) = Edited October 5, 2015 by tampicc Link to comment Share on other sites More sharing options...
peglem Posted March 18, 2011 Author Report Share Posted March 18, 2011 Peglem, do you have a PANDAS specialist that you see? It scares me that if she is declared a 'carrier' that they would decline to treat her. 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! Link to comment Share on other sites More sharing options...
sf_mom Posted March 18, 2011 Report Share Posted March 18, 2011 (edited) I will be starting clindamycin myself in two weeks to treat Babesia. I am also on doryx and pulsing tindamax. I'd watch DD response closely when starting..... 'air hunger' is a huge identifying symptom as well as petechial rash 'red freckles'. I only have about 15 to 20 of the red freckles but got more of them when we started provocation for Babesia. Deep bone pain in the thigh would be another symptom but I know she'd have a tough time communicating that to you. http://www.drjoneskids.org/ We are a lot closer to you than most and our Dr. has successfully helped a ton of autistic children. Both my twins had Lupus like rashes on their faces and as you know our twins have Lyme/Babesia/Bartonella. It is slowly, slowly resolving with treatment. He works very closely with Dr. Lynn Mielke here in CA. http://www.developmentalspectrums.com/index.php?option=com_content&task=view&id=12&Itemid=40 If you can all make it here...... I think our Dr. could help no matter the underlying issues. -Wendy Edited March 18, 2011 by SF Mom Link to comment Share on other sites More sharing options...
P_Mom Posted March 18, 2011 Report Share Posted March 18, 2011 Peg...is she due for another IVIG? When was her last one? Link to comment Share on other sites More sharing options...
peglem Posted March 18, 2011 Author Report Share Posted March 18, 2011 (edited) Peg...is she due for another IVIG? When was her last one? We just got back from IVIG-today. Her last was 3 weeks prior. I will be starting clindamycin myself in two weeks to treat Babesia. I am also on doryx and pulsing tindamax. I'd watch DD response closely when starting..... 'air hunger' is a huge identifying symptom as well as petechial rash 'red freckles'. I only have about 15 to 20 of the red freckles but got more of them when we started provocation for Babesia. Deep bone pain in the thigh would be another symptom but I know she'd have a tough time communicating that to you. 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. Edited March 18, 2011 by peglem Link to comment Share on other sites More sharing options...
3boysmom Posted March 19, 2011 Report Share Posted March 19, 2011 The involuntary movements are not S.C.? I'm sure that has also been ruled out! Link to comment Share on other sites More sharing options...
peglem Posted March 19, 2011 Author Report Share Posted March 19, 2011 The involuntary movements are not S.C.? I'm sure that has also been ruled out! 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? Link to comment Share on other sites More sharing options...
MichaelTampa Posted March 19, 2011 Report Share Posted March 19, 2011 If shelling out lots of money for a lyme doc is not an option, I am wanting to suggest an alternative to at least explore the lyme thing a little more. Dr. Klinghardt has a non-abx protocol for lyme/autism kids. You might get familiar with it, and also get familiar with some of the herbals used for lyme treatment. There's are a lot of supplements in these categories that you might obtain, or at least obtain some of them. (I, and others, could help you create quite a list, if you don't already have this information.) Perhaps some of the detox things you are already doing anyway. In any event, perhaps you could find someone in your area who could "energy test" / "applied kinesiology test" some of these supplements/lyme treatments to see if your son tests that they are good or even very good for them. If these things are good and helpful, in the beginning perhaps, it really doesn't matter why. But if he tests that a lot are helpful, and you see results, that might also be a clue that it is lyme. Many decent-sized cities will have acupuncturists that can do this type of testing. Ideally, you might find an NAET practitioner who has vials for lyme, the coinfections, and plenty of other bacteria and viruses out there, and could potentially help you find out what he is really reacting to. Just an idea, I know the lyme docs are very expensive, and add in the tests, it's a lot. This is a way to at least pursue it some at a bit of a cheaper cost. Link to comment Share on other sites More sharing options...
sf_mom Posted March 19, 2011 Report Share Posted March 19, 2011 I have to agree with Michael. Dr. Klinghardt has some good video's. http://www.klinghardtacademy.com/Protocols/Dr-Klinghardt-on-Autism.html When things settle down..... I'd be happy to send you some herbs to perhaps provoke a little to determine if its an issue for her. I have both 'bartonella' and 'babesia' herbs. Then maybe you'd have some confidence to pursue this a little further if she becomes more symptomatic. You would add the herbs with no other changes in protocol. Enula is one use for Babesia and can also be purchased at NutraMedix http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=29 The stuff I have is a little stronger. -Wendy Link to comment Share on other sites More sharing options...
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