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peglem

Emergency room and admitted to Children's hospital

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The past 3 to 4 weeks, Allie's been having problems with her hands/arms. Hands are swollen and stiff and or cramped. But also she has what kinda looks like a lupus butterfly rash. Every once in awhile, one of her arms will kind of float up in the air and stay there for a few seconds and then float back down. Her pediatrician put her on 5 days of prednisone and added Keflex to her zith. The pred did not seem to help. He ran some labs- and Friday they came back and her thyroid hormones were high, so he was going to get her in to an endo as soon as possible. That was on Friday and we have to wait for a referral to go through and she's getting worse on Saturday- she can't even pull down her own pants to use the bathroom, or feed herself. So, on Sunday, I took her to the emergency room, thinking she could at least get somebody to do a thyroid exam. The ER doc thought it looked like arthritis/lupus, but either way, thought she should be admitted to get a thorough work up, because the ER wouldn't be able to do that.

So we were transported to the Children's hospital and the labs they drew last night did not show high thyroid. :blink: I did not want to go to this hospital because the rheumatologist we've seen there in the past has been problematic, always recommends that we deal with things through paychiatry. But, in the morning a different, not so close-minded rheumy came in and did an exam. She ordered a hiney-load of testing and did not act like I was crazy! She said the movements (some of which were things my daughter has been doing for years) look like chorea. That made me, of course, think of strep. The pediatrician and i had not thought to check- she's on 500mg of zith every other day- she had some today even. Anyway, she is positive for strep- on the rapid!!!!!! :o The hosp. ped prescribed clindamycin for her and actually prescribed probiotics as well. He thinks she's "just a carrier" though and explained to me that if she's a carrier the strep is not causing her problems. He said to get checked 2 days after she finishes the abx to make sure she's cleared. We'll do follow up with the new (yea!) rheumy after she gets the tests back. WHAT THE HECK IS GOING ON WITH MY KID?????

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Wow! I can't believe she has strep!

Thank goodness it was found.

So bizarre!

Hope she feels better soon--and fantastic on a 'great' Doctor.

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Yeah, the clincher (before the strep swab was taken) was when she had an exorcist type melt down in the hospital. My dear Lord, the nursing staff were so...scared! Like 6 of them rushed in to hold her down- then I had to figure out a way to get them to ease up on the restraint, which makes my crazy, terrified child feel threatened and prolongs the whole thing.

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thinking about you and Allie and prayong for her

 

Melanie

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Wow...I'm glad they found the strep. Maybe I should have my guy tested for that, because he's having a bunch of symptoms (while on augm XR and plaquenil.) Good luck. I'm glad they found it. But, I'm not sure what's meant by if they are carriers then the strep wouldn't be causing the symptoms. And, what about that butterfly rash?

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So glad you found out she has strep! Even though it's scary and overwhelming to know strep is back, you know what the cause was and you know what to fight.

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Wow........so sorry. It blows my mind away how the strep can still be there. I pray you get this dang strep cleared and she enjoys some relief (and you, too). Maybe something other than zith for prophylaxis....in lieu of the resistance? I don't know....so bizarre. Clindamycin is supposed to be the "for sure" strep eradicator.....I really hope it works for you!!!

 

By the way...my older son had the floating arm thing at sudden onset when he had multiple motor tics, etc. His arm (just the right one) would float up and over and then come down. Sometimes, when he would take a drink of something...it looked like he was doing a "cheers" type thing before he would take a drink.

Edited by P.Mom

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What's scary to me is that the zith gave us a false sense of security, so that we did not suspect strep when the problems started. I agree that if she's a carrier it is not benign in her. When this started @ a month ago, I remember telling her teacher that she's acting like she has been exposed to strep...so, I should have checked- its just dang! IVIG every 3-4 weeks and the zithromax! How in the world could she have strep! With all these specialists repeating the benign strep carrier mantra, I wonder sometimes if she is a benign strep carrier. Is it possible that the strep is a red herring and when we treat for it- we're really treating something else? So that she improves, but not because the strep is gone, but because we've beaten back something else? IDK.

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What's scary to me is that the zith gave us a false sense of security, so that we did not suspect strep when the problems started. I agree that if she's a carrier it is not benign in her. When this started @ a month ago, I remember telling her teacher that she's acting like she has been exposed to strep...so, I should have checked- its just dang! IVIG every 3-4 weeks and the zithromax! How in the world could she have strep! With all these specialists repeating the benign strep carrier mantra, I wonder sometimes if she is a benign strep carrier. Is it possible that the strep is a red herring and when we treat for it- we're really treating something else? So that she improves, but not because the strep is gone, but because we've beaten back something else? IDK.

 

 

Yes, there could be a chronic infection that the zith is helping with and not strep. With a chronic infection the immune system is beaten down and then will not be able to handle stuff that healthy people would. Have you done any testing on immune system, or had evaluation for lyme? (Sorry, I remember your name well, but with so many people on here, I find it difficult to remember what testing and evaluation people have done.) Some with autism are cured with lyme treatments, and also same thing for lupus, so the rash does raise more lyme suspicion in my eyes.

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What's scary to me is that the zith gave us a false sense of security, so that we did not suspect strep when the problems started. I agree that if she's a carrier it is not benign in her. When this started @ a month ago, I remember telling her teacher that she's acting like she has been exposed to strep...so, I should have checked- its just dang! IVIG every 3-4 weeks and the zithromax! How in the world could she have strep! With all these specialists repeating the benign strep carrier mantra, I wonder sometimes if she is a benign strep carrier. Is it possible that the strep is a red herring and when we treat for it- we're really treating something else? So that she improves, but not because the strep is gone, but because we've beaten back something else? IDK.

 

 

Yes, there could be a chronic infection that the zith is helping with and not strep. With a chronic infection the immune system is beaten down and then will not be able to handle stuff that healthy people would. Have you done any testing on immune system, or had evaluation for lyme? (Sorry, I remember your name well, but with so many people on here, I find it difficult to remember what testing and evaluation people have done.) Some with autism are cured with lyme treatments, and also same thing for lupus, so the rash does raise more lyme suspicion in my eyes.

We've not done lyme testing. She does have an immune deficiency- IgG, IgA, IgE. The only normal Ig is M. But, for nearly a year we've been on IVIG, so would be hard to test for lyme. Its on my radar- we may end up there. This was all going on during my daughter's formative years, so don't think we can really undo the FU'd development. But, if we can get underlying issues stopped she will have a chance of becoming more functional.

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HI,

 

Becauuse your daughter is older, I am wondering if she may have the same problem that we

are having here. My son has wisdom teeth that are half in and half out, according to the

dentist who says that even he has trouble reaching down in there to clean during his

semiannual checkup and cleaning. This a wonderful media for the streps to grow, thus

your title of being a strep carrier. We were advised to get all wisdoms removed asap.

I plan to ask our dr for antibiotics to take before, during and after procedure.

 

Maybe this is a source of her strep, might be worth getting it checked out at next

dental visit.

I hope she gets well soon, she has been through enough and deserves some

peace, and you too!

 

Hope for healing,

Mustang Carole

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HI,

 

Becauuse your daughter is older, I am wondering if she may have the same problem that we

are having here. My son has wisdom teeth that are half in and half out, according to the

dentist who says that even he has trouble reaching down in there to clean during his

semiannual checkup and cleaning. This a wonderful media for the streps to grow, thus

your title of being a strep carrier. We were advised to get all wisdoms removed asap.

I plan to ask our dr for antibiotics to take before, during and after procedure.

 

Maybe this is a source of her strep, might be worth getting it checked out at next

dental visit.

I hope she gets well soon, she has been through enough and deserves some

peace, and you too!

 

Hope for healing,

Mustang Carole

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!

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