peglem Posted March 16, 2011 Report Share Posted March 16, 2011 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? Link to comment Share on other sites More sharing options...
thereishope Posted March 16, 2011 Report Share Posted March 16, 2011 Could it be that Zith resistent strain of strep? If the Zith wasn't killing the strep, then I would think the predisone didn't have the right "foundation" to do its magic. In fact, could the prednisone may have laid framework to make this particualr infection worse? Link to comment Share on other sites More sharing options...
trggirl Posted March 16, 2011 Report Share Posted March 16, 2011 It makes me wonder too. Just thinking aloud, they can find out what antibiotics it is susceptible to. But then I am wondering if it is hiding in places the antibiotic can't reach. Would strong IV antibiotics be helpful? I don't know. Link to comment Share on other sites More sharing options...
trggirl Posted March 16, 2011 Report Share Posted March 16, 2011 It makes me wonder too. Just thinking aloud, they can find out what antibiotics it is susceptible to. But then I am wondering if it is hiding in places the antibiotic can't reach. Would strong IV antibiotics be helpful? I don't know. Link to comment Share on other sites More sharing options...
3boysmom Posted March 16, 2011 Report Share Posted March 16, 2011 Wow Peg, you have been through so much. I've seen youb post throughout the years and always hope to read that the magic answer has been found for sweet Allie. I can't remember though if you all tried Augmentinv XR 1000 yet. Also when our son "got" PANDAS in 2009, one of our other sons got HSP at the same time. That is how we figured out that they all had asymptomatic strep. HSP is an autoimune illness from strep. It is said to be temporary, but it swelled Carter's hands and feet up and he could not use them. It was also very painful. I'm only mentioning it because one of the things they did was monitor his urine for internal problems...and that is the more serious posibility of HSP. I bet your doctors already ruled that out, but I thought I should mention it because o it comes from strep and swells hands and feet (and other things). Prayers to you. Please post an update, I am concerned for you both and have been following this latest issue. How in the world could she have STREP after all that?! Linda " Link to comment Share on other sites More sharing options...
wornoutmom Posted March 16, 2011 Report Share Posted March 16, 2011 peg: it's my understanding that antibiotics do not kill the bacteria. They hamper it in some way (different types of ways for different types of abx) to allow your immune system to effectively fight the infection away. Perhaps this is a new strain of strep, that zith was unable to hamper enough or in the right way, and/or the donor antibodies did not recognize. My son had reccurent strep infections years ago that several doses of zith was only a small bandaid for. It took the Clyndamycin to knock it out. This is strong stuff that goes into the smooth muscle tissue looking for bacteria. I believe this will work, and that your daughter will get back to healing. Link to comment Share on other sites More sharing options...
peglem Posted March 16, 2011 Author Report Share Posted March 16, 2011 peg: it's my understanding that antibiotics do not kill the bacteria. They hamper it in some way (different types of ways for different types of abx) to allow your immune system to effectively fight the infection away. Perhaps this is a new strain of strep, that zith was unable to hamper enough or in the right way, and/or the donor antibodies did not recognize. My son had reccurent strep infections years ago that several doses of zith was only a small bandaid for. It took the Clyndamycin to knock it out. This is strong stuff that goes into the smooth muscle tissue looking for bacteria. I believe this will work, and that your daughter will get back to healing. Thank you for that bit of hope! Link to comment Share on other sites More sharing options...
peglem Posted March 16, 2011 Author Report Share Posted March 16, 2011 Wow Peg, you have been through so much. I've seen youb post throughout the years and always hope to read that the magic answer has been found for sweet Allie. I can't remember though if you all tried Augmentinv XR 1000 yet. Also when our son "got" PANDAS in 2009, one of our other sons got HSP at the same time. That is how we figured out that they all had asymptomatic strep. HSP is an autoimune illness from strep. It is said to be temporary, but it swelled Carter's hands and feet up and he could not use them. It was also very painful. I'm only mentioning it because one of the things they did was monitor his urine for internal problems...and that is the more serious posibility of HSP. I bet your doctors already ruled that out, but I thought I should mention it because o it comes from strep and swells hands and feet (and other things). Prayers to you. Please post an update, I am concerned for you both and have been following this latest issue. How in the world could she have STREP after all that?! Linda " 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). Link to comment Share on other sites More sharing options...
EAMom Posted March 16, 2011 Report Share Posted March 16, 2011 peg: it's my understanding that antibiotics do not kill the bacteria. They hamper it in some way (different types of ways for different types of abx) to allow your immune system to effectively fight the infection away. 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? Link to comment Share on other sites More sharing options...
peglem Posted March 16, 2011 Author Report Share Posted March 16, 2011 peg: it's my understanding that antibiotics do not kill the bacteria. They hamper it in some way (different types of ways for different types of abx) to allow your immune system to effectively fight the infection away. 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. Link to comment Share on other sites More sharing options...
3boysmom Posted March 16, 2011 Report Share Posted March 16, 2011 Our PANDAS son also has Sydenhyms Cohrea. My sister has lupus and although I know that it is also autoimmune... I didn't know about the hyperthy...thing...what does that mean? ( we are camping & awa from the computer. Only my iPhone. Linda Link to comment Share on other sites More sharing options...
peglem Posted March 16, 2011 Author Report Share Posted March 16, 2011 Our PANDAS son also has Sydenhyms Cohrea. My sister has lupus and although I know that it is also autoimmune... I didn't know about the hyperthy...thing...what does that mean? ( we are camping & awa from the computer. Only my iPhone. Linda 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. Link to comment Share on other sites More sharing options...
3boysmom Posted March 16, 2011 Report Share Posted March 16, 2011 (edited) Wow that may explain why ds11 is always hot and maybe why his ears sometimes get red. He is always sweaty. I would mention that he is always hungry but that is probably just a normal 11 year old growing boy thing. ThankS for the info. Can this be related to family thyroid problems or is this something totally different? ( dh and his mom & his sister have thyroid issues. Edited March 16, 2011 by 3boysmom Link to comment Share on other sites More sharing options...
peglem Posted March 16, 2011 Author Report Share Posted March 16, 2011 Wow that may explain why ds11 is always hot and maybe why his ears sometimes get red. He is always sweaty. I would mention that he is always hungry but that is probably just a normal 11 year old growing boy thing. ThankS for the info. Can this be related to family thyroid problems or is this something totally different? ( dh and his mom & his sister have thyroid issues. 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. Link to comment Share on other sites More sharing options...
EAMom Posted March 16, 2011 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...
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