pixiesdaddy Posted April 21, 2010 Author Report Posted April 21, 2010 DD9 is seeing her pediatrician (not Dr. K) tonight. I can advocate to get her a strep culture. If it comes back positive again, I'm sure we can convince him into the loading dose. If it's not positive, maybe all we need right now is a preventative. But at 68 hour half-life, she's got reasonably good coverage on an every-other day dose it sounds like? Shes 9 and is about 58 lbs. Pixiesdaddy
pixiesmommy Posted April 22, 2010 Report Posted April 22, 2010 To make a long story short: Pixie is switched to 250mg/Zithromax for 7 days, then I think we will do the 250mg/every other day dose. Dr did not want to test for m. pneumoniae but said the treatment is zith anyway, so that should knock it out if she has it. For me- changed me to Cipro and refilled my epi-pen prescription in case I'm allergic So I will try that this weekend when DH is here to rush me to the ER on the chance that I *am* allergic. Ugh.
EAMom Posted April 22, 2010 Report Posted April 22, 2010 (edited) My dd is 58 pounds as well. She has been on 250mg/day Azith. since June 08 until 1mo. ago when she was upped to 500mg/day. I believe SFMom has a 44 pounder on 500mg/day. Edited April 22, 2010 by EAMom
colleenrn Posted April 22, 2010 Report Posted April 22, 2010 Pixiesmommy, If Pixie doesn't have strep, the every other day Zith may be enough, but if she has strep, the every other day would not be enough. My sister's physician, who is very conservative, says that with an active strep infection, a much larger dose is required. She uses 500mg of Zithromax with an active strep infection in a 60 lb. child. If you think it is strep, can you give her the 250mg every day for a week and then re-evaluate? Just thinking out loud. Good luck with your antibiotic too!! Colleen
pixiesmommy Posted April 26, 2010 Report Posted April 26, 2010 We're on day 3 of the Azith (doing 7 days to eradicate any strep and/or mycoplasma) and she is just EXHAUSTED. Her skin looks so weird and mottled and it looks like someone drained the blood from her face and left dark circles under her eyes. Behavior is not that bad- no violence, but lots of sensory things going on and teachers all say she is doing awesome at school, so my guess is that she's using up every last bit of energy there and falling apart at home. She's quick to whine and react with impatience at every little thing, some picking apart of how you say something and has come up with lots of "inventions" lately (grandiose behavior.) We're moving and saw the psych on Sat who thought a lot of it was just anxiety about the move, so we're just waiting it out at this point. We're doing all we know how to do. She'll do the 7 days of treatment Azith then go to every other day 250mg, continue the diet, continue the NRT (which has helped!- nutritional response therapy) and chiro once/week, try to get her to do some yoga/stretching, keep the routines the same with lots of time for transitions and foster as much sleep as we can, and have ramped up the epsom salt soaks at night for her and use of xylitol gum. Her 72 hr culture came by negative today, not that that means anything.... but still....
Joan Pandas Mom Posted April 26, 2010 Report Posted April 26, 2010 Did you dd ever have a T &A? ENT said my son's were "gravely" (gross!) with infection hiding in there. He had been on an abx 7 1/2 weeks prior to T&A. We're on day 3 of the Azith (doing 7 days to eradicate any strep and/or mycoplasma) and she is just EXHAUSTED. Her skin looks so weird and mottled and it looks like someone drained the blood from her face and left dark circles under her eyes. Behavior is not that bad- no violence, but lots of sensory things going on and teachers all say she is doing awesome at school, so my guess is that she's using up every last bit of energy there and falling apart at home. She's quick to whine and react with impatience at every little thing, some picking apart of how you say something and has come up with lots of "inventions" lately (grandiose behavior.) We're moving and saw the psych on Sat who thought a lot of it was just anxiety about the move, so we're just waiting it out at this point. We're doing all we know how to do. She'll do the 7 days of treatment Azith then go to every other day 250mg, continue the diet, continue the NRT (which has helped!- nutritional response therapy) and chiro once/week, try to get her to do some yoga/stretching, keep the routines the same with lots of time for transitions and foster as much sleep as we can, and have ramped up the epsom salt soaks at night for her and use of xylitol gum. Her 72 hr culture came by negative today, not that that means anything.... but still....
pixiesdaddy Posted April 26, 2010 Author Report Posted April 26, 2010 DD9 has had a tonsils and adenoids removed. I know she's had tonsil - Pixiesmommy could confirm adenoids since that was before Pixiesmommy and DD9 came into my life. Despite NO positive strep tests by age 5, the surgeon who took out the tonsils commented that they were the MOST scarred tonsils he had EVER seen... Go figure. Pixiesdaddy
bronxmom2 Posted April 26, 2010 Report Posted April 26, 2010 DD9 has had a tonsils and adenoids removed. I know she's had tonsil - Pixiesmommy could confirm adenoids since that was before Pixiesmommy and DD9 came into my life. Despite NO positive strep tests by age 5, the surgeon who took out the tonsils commented that they were the MOST scarred tonsils he had EVER seen... Go figure. Pixiesdaddy You're a good man, pixiesdaddy.
pixiesmommy Posted April 27, 2010 Report Posted April 27, 2010 She does still have adenoids. We had them scoped by the ENT back in Sept or Oct and he said they did not look like they (or sinuses) were harboring infection or had any other issues (scarring I guess.) I'm afraid to have them out because (maybe this is silly) I have read that anesthesia can exacerbate bipolar, which is what she was first diagnosed with and there may also be some family history. I don't want to "turn anything on" genetically by trying to avoid something else. It's all so simple, isn't it? Ha!
kim Posted April 27, 2010 Report Posted April 27, 2010 pixiemommy, I hope you and your family are doing well. I only read this thread today, or I would have mentioned this earlier. I have read some personal accounts of people who had tendon problems (including rupture) while taking cipro. I hope it's going ok for you, but please be extra cautious with any pain that might arise. http://www.webmd.com/news/20080708/fda-war...rupture-tendons FDA Warning: Cipro May Rupture Tendons Agency Issues 'Black Box' Warning for Antibiotics Known as Fluroquinolones She says patients taking the drugs should tell their doctors immediately if they experience soreness or inflammation in muscles or tendons and that they should not exercise affected joints.
pixiesdaddy Posted May 12, 2010 Author Report Posted May 12, 2010 Update. DD9 (PANDAS) is currently on 250 mg of Azith every other day. No one else is medicated. Last strep culture for DD9 came back negative. DD9's behaviors have been pretty reasonable. Some emotional lability, some sensory, but mostly on the mild scale. Are we out of the woods with the "indestructible strep"? Who knows... it feels like the worst has passed, but we always know things can change quickly. Thank you all for the advice! Pixiesdaddy
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