pixiesdaddy Posted February 23, 2010 Report Share Posted February 23, 2010 Hi, Our DD9 was treated with IVIG by Dr. K in early September of 2009. Before treatment, her symptoms included: -Severe rage attacks -Inability to attend school -Full body motor tics -Bed and day-wetting -Fatigue -OCD (door shutting, toothbrush tapping, etc.) -Eye tics -Finger tics Post-IVIG, she's really done well. Within days, her tics and wetting disappeared. Over the first four weeks, her rages really diminished. She's returned to school, grades are improving, etc. We were just daring to breathe... Well, she just had a positive strep culture today - weakly positive, but positive. So far, no recurrence of symptoms. No signs of anything other than feeling sick. I know that no one can predict the future, but I wondered if anyone else had gotten IVIG, then gotten sick (with strep?) afterwards, and how it went for them. How badly did they backslide? How did you treat or approach it? Dr. K and our pediatrician have recommended switching from her prophylactic dosage of Augmentin (500 mg per day) to Cefdinir (300 mg per day) for 10 days, then returning to the Augmentin. Anyway, thoughts? Advice? Anyone who's been there? Pixiesdaddy Link to comment Share on other sites More sharing options...
Alex Posted February 23, 2010 Report Share Posted February 23, 2010 Hi, Our DD9 was treated with IVIG by Dr. K in early September of 2009. Before treatment, her symptoms included: -Severe rage attacks -Inability to attend school -Full body motor tics -Bed and day-wetting -Fatigue -OCD (door shutting, toothbrush tapping, etc.) -Eye tics -Finger tics Post-IVIG, she's really done well. Within days, her tics and wetting disappeared. Over the first four weeks, her rages really diminished. She's returned to school, grades are improving, etc. We were just daring to breathe... Well, she just had a positive strep culture today - weakly positive, but positive. So far, no recurrence of symptoms. No signs of anything other than feeling sick. I know that no one can predict the future, but I wondered if anyone else had gotten IVIG, then gotten sick (with strep?) afterwards, and how it went for them. How badly did they backslide? How did you treat or approach it? Dr. K and our pediatrician have recommended switching from her prophylactic dosage of Augmentin (500 mg per day) to Cefdinir (300 mg per day) for 10 days, then returning to the Augmentin. Anyway, thoughts? Advice? Anyone who's been there? Pixiesdaddy Sorry to hear about the strep. My only thought is to be agressive in treating the strep. Is 300 mg Cefdinir a prophylactic dose or a treatment dose? If she is culturing postive then I'd want to make sure we were treating it as an active strep infection. With all these kids have been through, and all the antibioitcs they have been on, I'd think now is not the time to be conservative, especially since things have been going well and moving in the right direction. Good luck, Alex Link to comment Share on other sites More sharing options...
pixiesdaddy Posted February 23, 2010 Author Report Share Posted February 23, 2010 From what I understand, the 300 mg is a treatment dose. I didn't ask that question specifically, but it was prescribed by the pediatrician, and his words were something to the effect of - give her the Cefdinir on a 10 day dose to clear the strep out and then return to the prophylactic dose. That sounds like it's a treatment dose? Hearing her cough as she sleeps tonight - waiting with baited breath to see what kind of kid we have tomorrow... Link to comment Share on other sites More sharing options...
sf_mom Posted February 23, 2010 Report Share Posted February 23, 2010 Our son was exposed to strep two weeks ago.... he has had three IVIGs with Dr. K (currently 6 weeks post the last treatment). Our story: he went to school and came home a different kid. It was such a dramatic change we decided to pull him from school until we could determine what was going on. One of the parents e-mailed the following day to say her daughter was sent home from school with 104 fever... and eventually confirmed with strep. We did not test our son for active strep infection due to antibiotics and false negatives. We had also e-mailed with Dr. K at the time and he really felt is was a waiting game to see what would happen since he was only four weeks post treatment at that time. We saw a 48 hour reaction, as quickly as the symptoms came on they disappeared. We saw another 24 hour blip one week later and some mood liability. He is now doing better than ever even prior to exposure I'm with the others, treat aggressively.... wishing your experience to be similar to ours or she has no reaction at all. Link to comment Share on other sites More sharing options...
EAMom Posted February 23, 2010 Report Share Posted February 23, 2010 I'm curious...was pixie getting 500mg of augmentin 1x daily (or 250mg twice daily)? Link to comment Share on other sites More sharing options...
colleenrn Posted February 23, 2010 Report Share Posted February 23, 2010 How much does Pixie weigh? If she is less than 50 lb., 300mg is a treatment dose. When my kids have had an active infection while on prophylactic antibiotics and we need to add 10 days of something else, we were told not to discontinue the prophylactic one, but to give both. I am wondering if anyone else has had that experience? Colleen Link to comment Share on other sites More sharing options...
pixiesdaddy Posted February 23, 2010 Author Report Share Posted February 23, 2010 She is just over 50 lbs - 54. So I'm assuming it's still a treatment dose? Pixie is almost five months post-IVIG, but Dr. K's thought was similar - wait and see. When we saw one little blip of eye tics returning (before we ever knew she had strep), he said such an episode could be "self-limiting." Interesting, she has a wicked cold at the moment. I don't think that part is strep, but getting that cold got us to take her to the ped who did the culture that found the strep. Maybe it'll be a lucky cold to help us catch the strep early... Also, in response to your other question, she gets 500 mg 1x per day in the mornings of Augmentin. I did specifically ask if she should take the prophylactic AND the treatment dose, but the encouragement from both Dr. K and the ped was to only take the treatment dose and then go back to the prophylactic dose. Pixiesdaddy Link to comment Share on other sites More sharing options...
colleenrn Posted February 23, 2010 Report Share Posted February 23, 2010 Treatment dose is 14mg/kg/day which would be 343mg/day for 54#, so close. Colleen Link to comment Share on other sites More sharing options...
EAMom Posted February 23, 2010 Report Share Posted February 23, 2010 Also, in response to your other question, she gets 500 mg 1x per day in the mornings of Augmentin. hmmm. Okay, this is confirming my theory that Augmentin should be given 2x daily for strep prevention. Link to comment Share on other sites More sharing options...
pixiesdaddy Posted February 23, 2010 Author Report Share Posted February 23, 2010 It's a struggle about strep prevention with our DD if what you say is true. I'm leery of high doses of antibiotics over so long too. We do probiotics, but DD also struggles - seemingly - with a virus pattern (low grade fevers, fatigue, headaches) quite frequently. We've been seeing a chiropractor who does nutrition response therapy - and we're seeing results - but the recommendation has been to avoid sugar and wheat and things which could feed mold or yeast. Thus the fear about high doses of antibiotics... So far, she's been tired and oogy feeling today - consistent with a kid with a bad cold - but no tics that I've seen, no poor behavior, no emotional lability, etc. Took the first dose of cefdinir without issue... Link to comment Share on other sites More sharing options...
EAMom Posted February 23, 2010 Report Share Posted February 23, 2010 I believe that 250mg 2x daily augmentin (so same total daily dose) might do a better job of preventing strep than 500mg once daily. Augmentin contains amoxcillin which has a pretty short 1/2 life (like pen, which must be given 2x daily). Link to comment Share on other sites More sharing options...
pixiesdaddy Posted February 24, 2010 Author Report Share Posted February 24, 2010 So... the whole family got tested for strep and we all came back positive. Everyone is now on abx. DD9 - Cefdinir, 300 mg, 1x day for 10 days. Then returning to 500 mg of Augmentin, 1x day. DD2 - Cefdinir, (forget dosage... less than DD9), 1x day for 10 days Me - Cefdinir, 300 mg 2x day for 10 days. Wife - Z-Pac, 5 day course. She's anaphylactic to all other abx. Our ped (who is not a PANDAS ped) was shocked that we all had strep. None of us are showing classic symptoms of it. Waiting to see what the result will be as DD9 recovers. We haven't seen any exacerbation signs... yet... crossing fingers Pixiesdaddy Link to comment Share on other sites More sharing options...
pixiesmommy Posted February 24, 2010 Report Share Posted February 24, 2010 We simply follow the abx directions given to us from Dr K. I don't see how this should be altered, but it's also my (maybe incorrect) understanding that you can still get strep no matter what proph. abx you are on, the strep doesn't keep you from GETTING it, it just keeps you from the DAMAGE of it. Am I not understanding that correctly? We were told to give her the 500mg in the morning to best protect her during the day. Pixie is obviously our little strep detector, because her little sister and I went for strep tests today and guess what? Both positive. The doctor thinks mine may be lurking in sinuses instead of throat since I have my tonsils out and tend to have sinus probs. He also agree with me that I could very well be a carrier since I have frequent strep and have a history of it. The prob with this is that he says there are conflicting studies about possibility of eradicating strep in a carrier, AND the added fact that I am anaphylactic to nearly every abx out there. He put me on a z-pack and the rest of the family on cefdinir. He was iffy if the z-pack would get rid of mine, but wants us all back in 4 weeks to re-test anyway. Pixie complained of legs hurting and that was the big red flag that made me think she had strep, NOT the cold symptoms she has. She and I both have constant sore throat and intermittent sniffles, so that didn't call out to me as much as the leg pain. I don't think we have seen leg pain at ALL since IVIG back in September!!! Another thing is, now I'm wondering if I am also a detector, because my "Fibro" or whatever symptoms flared last week with swollen joints and the whole 9 yards. Hmmmmmm..... Anyway, it all hit her like a ton of bricks yesterday and then on the way home from the positive strep tests, the 2 yr old started screaming for water and to nurse because her throat hurt, and then she was totally down for the count once we got home. I got home and Pixiesdaddy (who didn't get tested but is getting treated anyway) was all red around the eyes and not feeling well. Two hours later, it hits me like a ton of bricks as I'm loading the dishwasher, with sore throat and chills. Here we thought maybe her cold just clued us in and she was at the tail end of strep, but I think now it was the other way around. She happened to have those symptoms aside from everything else and we are just BEGINNING our bout of strep for the family. Ugh!!!! Link to comment Share on other sites More sharing options...
sf_mom Posted February 24, 2010 Report Share Posted February 24, 2010 WOW, wishing you all the best..... What a smart move to have everyone checked in the household!!!! Please keep us posted as to how she doing. I am hopeful your experience will be similar 'small or no blip' in behavior. I would recheck everyone again in 14 days post antibiotic to confirmed its cleared the household. Link to comment Share on other sites More sharing options...
P_Mom Posted February 24, 2010 Report Share Posted February 24, 2010 Wow...I hope there is no reaction...this is what I have been waiting to see....a child post IVIG get strep and no PANDAS symptoms....keeping you in my prayers!! (not that I am happy Pixie got strep....but, that she has not had symptoms.....you know what I mean, right?) Were you rapid positive or only culture positive??? Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now