coco Posted October 21, 2009 Report Posted October 21, 2009 Hi All, My dd9 has been on augmentin, 250 mg daily, she is 58 lbs, since 6 weeks prior to first 2-day ivig with dr k. in August. After ivig still remained on 250mg daily of augmentin. We had consulted with local immuno (because of distance) prior to and since then for sebsequent local follow-up. He went through her blood results in detail and diagnosed her with SAID (Specific Antibody Immune Deficiency). She failed tetnus, 13 of 14 pneumo strep, borderline fail lymes, and failed 2 of 4 IGG subclasses. He switched her from Augmentin 250 to Azithro 500 daily. We just did #2 IVIG last week. My dd has had this pandas undiagnosed for years, and I think I realize that Azithro is better for intracellular strep, which my daughter may have. What do you all think about this? And should I even ask to increase the Azithro amount...so many new happy stories about these higher doses. BTW, my daughter is seeing sawtooth improvement, but could be better. Am I asking for too much too soon? We've been in the soup for sooooo long! Thanks!!!! Coco
EAMom Posted October 21, 2009 Report Posted October 21, 2009 Hi All, My dd9 has been on augmentin, 250 mg daily, she is 58 lbs, since 6 weeks prior to first 2-day ivig with dr k. in August. After ivig still remained on 250mg daily of augmentin. We had consulted with local immuno (because of distance) prior to and since then for sebsequent local follow-up. He went through her blood results in detail and diagnosed her with SAID (Specific Antibody Immune Deficiency). She failed tetnus, 13 of 14 pneumo strep, borderline fail lymes, and failed 2 of 4 IGG subclasses. He switched her from Augmentin 250 to Azithro 500 daily. We just did #2 IVIG last week. My dd has had this pandas undiagnosed for years, and I think I realize that Azithro is better for intracellular strep, which my daughter may have. What do you all think about this? And should I even ask to increase the Azithro amount...so many new happy stories about these higher doses. BTW, my daughter is seeing sawtooth improvement, but could be better. Am I asking for too much too soon? We've been in the soup for sooooo long! Thanks!!!! Coco I would say 500mg/day is a plenty big dose of Azith. for a 58 pounder. Azith. has been the best ab for us (although we didn't do super high Saving Sammy doses of Augmentin). I would give both the Azith. and the IVIG another month...as long as things are overall heading in the right direction.
colleenrn Posted October 21, 2009 Report Posted October 21, 2009 My kids are on Zithromax daily. When my 13 yo was 8 or 9, we didi Augmentin prophylactically every day until one day when she broke out in hives and we were afraid she developed an allergic reaction and chose to completely stop all antibiotics. This is another story, but a huge mistake and huge regret on my part, b/c once she was off the Augmentin she started to decline. Ever since my kids were heavily exposed to strep this summer, they have never been the same even on Zith. My question is, does anyone have any thoughts on either switching from daily Zith (they have been on it almost 11 months) to Augmentin? I am also considering remaining on the Zith, but adding 2 weeks of Augmentin. Any thoughts? Colleen
lismom Posted October 21, 2009 Report Posted October 21, 2009 Colleen, are your kids all on the same dosage? I am going to try a higher dose of zith for my 12yr old. It seems in most of our cases of stubborn strep and inflammation, to low as a prophylactic may not be enough. I am in the wait and see with what may still be to low of 750mg every other day. The saving sammy high dose of Aug took over 1 year and then even a relatively high dose of proph for 2 more or so. A two week experiment would be interesting, especially if your kids are below 80% back to baseline. Kathy
colleenrn Posted October 21, 2009 Report Posted October 21, 2009 Yes, they are all on Zithromax 250 mg/day. Their weights are 47, 75, and 130. Colleen
EAMom Posted October 21, 2009 Report Posted October 21, 2009 Hey Colleen...have you been considering a steroid trial (or IVIG or PEX) to see if you can get your kids back to baseline? That one of the reasons we decided to do IVIG...we could see dd's baseline rising even on 250mg/day azith.
momtocole1 Posted October 25, 2009 Report Posted October 25, 2009 Hey Colleen...have you been considering a steroid trial (or IVIG or PEX) to see if you can get your kids back to baseline? That one of the reasons we decided to do IVIG...we could see dd's baseline rising even on 250mg/day azith. Dear EA Mom, Could you please explain baseline to me. My son has been sick for so long I don't know what a baseline is for him. Is a baseline where we would expect our kids to be with now OCD or tic type symptoms??? Sorry if I sound dumb, I still am learning so much... Thanks, Judy...
EAMom Posted October 25, 2009 Report Posted October 25, 2009 Hey Colleen...have you been considering a steroid trial (or IVIG or PEX) to see if you can get your kids back to baseline? That one of the reasons we decided to do IVIG...we could see dd's baseline rising even on 250mg/day azith. Dear EA Mom, Could you please explain baseline to me. My son has been sick for so long I don't know what a baseline is for him. Is a baseline where we would expect our kids to be with now OCD or tic type symptoms??? Sorry if I sound dumb, I still am learning so much... Thanks, Judy... Well, to me "baseline" is where your kid is when the exacerbation is over. Sort of a new "normal" for your kid. A "new baseline" could include residual OCD, irritibility, learning issues, anxiety, ADHD, tics, etc. that don't seem to ever go away. If PANDAS has been going on for years, it might be hard to know what your kids "real" (old) baseline is, because there is a "new" baseline there instead. So far, with IVIG (early Aug) and continued Azith. it appears we have gotten back to our "real" old baseline.
sf_mom Posted October 25, 2009 Report Posted October 25, 2009 We experience the same new 'real' baseline. Hey Colleen...have you been considering a steroid trial (or IVIG or PEX) to see if you can get your kids back to baseline? That one of the reasons we decided to do IVIG...we could see dd's baseline rising even on 250mg/day azith. Dear EA Mom, Could you please explain baseline to me. My son has been sick for so long I don't know what a baseline is for him. Is a baseline where we would expect our kids to be with now OCD or tic type symptoms??? Sorry if I sound dumb, I still am learning so much... Thanks, Judy...
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