Lena_Dmom Posted September 26, 2009 Report Share Posted September 26, 2009 Morning! Wow, I lasted like what... a week without you?! Here I come again - need to tap into your knowledge. DS has been taken Amoxicillin (250 mg/ 5 ml x 2 day) for 11 days now. He is also on Nystatin (100 000 UI/ 2.5 ml x 2 day) for 4 days and I plan to get him up to 200 000 in a day or so. So question - should we have started seeing a difference in his PANDAS symptoms by now or is this too soon? His emotional liability is through the roof. He clings to me in the morning during daycare drop offs, cries a lot at daycare, gets irritated at a drop of a needle (we have a luxury of a behavioral specialist observing him the last two weeks in prep for assigning him therapeutic support staff (TSS) who'll be providing 1:1 assistance 3-4 hours a day at the daycare). So she has been filling me in. He is also aggressive towards other kids (even bit a kid) which is quite out of his character... He also had several potty accidents this week. So at first I thought that perhaps it is his yeast flaring up. But his motor tics (right shoulder and right arm) are still present... Should we stick with Amoxicillin for another week or two?... Or should I call Dr. and ask for something stronger to start DS on? Like Zithromax (azithromycin)? Also, his Nystatin prescription says (on the bottle) - 100 000 UI x 2 day. Should it be given more frequently? I thought to have a luxury of x 2 day it needs to be something stronger like Duflican? As always, thank you a million in advance for your help. He's been quite miserable lately, even daycare teachers noticed that he needed a whole lot more redirection this week and has been an emotional mess. I just cringe at the thought of giving him Amoxicillin for another month or so if it does not do the job for him... Lena Link to comment Share on other sites More sharing options...
thereishope Posted September 26, 2009 Report Share Posted September 26, 2009 My son went on amoxicillan for his strep. To be honest, you should proabbly at least see a plateau by now. The first time he had strep, I saw some improvement (not full recovery, but relief) by day 3 or 4. When that did not happen the second time, they gave him a 5 day scrpit for prednisone to help with the inflamation.That did help. I would request a steorid and see if that helps. Most will tell you to change antibiotic as well. But I will leave that discussion to them since I've only ever stayed on amoxicillan. I don't want to give info if I have not done it first hand. I think if I didn't see improvement within 11 days, I would change the antibiotic too. Keep in mind, you wouldn't see full recovery within the time of the initial script for antibiotics, but like I said, at least a plateau or the beginnings of recovery. If you doctor will not prescribe a steroid, you can give Ibruprofen. That may reduce some swelling too, and in turn, help with symptoms. Link to comment Share on other sites More sharing options...
bronxmom2 Posted September 26, 2009 Report Share Posted September 26, 2009 This is just my experience, but amox never helped my son at all. Didn't make a dent in his symptoms at all (or, for that matter, in the underlying infection that was raging through his body). Omnicef is what worked for us. It worked, for us, even better than zithromax, which most people on this board favor. I think Omnicef may be one of the strongest antibiotics and if you still think there's an infection lurking somewhere in your child, that's the one I would use, personally. I would try to switch right away. The dr. will probably tell you that Amox always works on strep... but it isn't true. Good luck. Link to comment Share on other sites More sharing options...
P_Mom Posted September 26, 2009 Report Share Posted September 26, 2009 Aomxicillin worked for my son, however, your dose...250mg 2x day, is low. It is actually a prophylactic dose...how old is your son....how much does he weigh. You may just need a higher dose??? Kelly Link to comment Share on other sites More sharing options...
dcmom Posted September 26, 2009 Report Share Posted September 26, 2009 We saw dd stop deteriorating on amox. It wasn't until we switched to zithromax that we saw improvement. It took about 20 days to see a major difference.... I would give it 14 days, and then consider switching to something stronger... Link to comment Share on other sites More sharing options...
ShaesMom Posted September 26, 2009 Report Share Posted September 26, 2009 Is this your son's first episode? If not and you have repeatedly used amox it may no longer be effective. this seemed to be the case with our daughter. She had repeatedly been on Septra for her UTI's--it always seemed to nip the behavior in the bud. Then this last spring during her most recent episode-her body just laughed at it and she continued to get worse until we switched abx. Try switching to something stronger. Link to comment Share on other sites More sharing options...
smartyjones Posted September 26, 2009 Report Share Posted September 26, 2009 I have no advice b/c I don't understand the differences btwn antibiotics. I will tell our experience. Oct2008 - initial intense symptoms. Dec2008 - high strep titers, + culture. Jan2009 - 5 day course Zithromax = horrible ramp up of separation anxiety & neediness - subsided approx 5 days after off antibiotic. Feb2009 - 35 day course Keflex. Within 3 days of starting the Keflex, he was much much better. Not sure when but during abx was 100% back to pre-pandas behaviors. Continued for about 10 weeks until he had a cold. Another course of Keflex saw some improvement but not so dramatic. I'm not sure why but it does seem different abx show different results with different kids. Good luck. Link to comment Share on other sites More sharing options...
smartyjones Posted September 26, 2009 Report Share Posted September 26, 2009 Sorry - I forgot to add - I was investigating yeast b/c of the behaviors when the behavior therapist suggested pandas. When on the Keflex both times, he was also on Nystatin. I'm now not sure what role I think yeast has playing in any of it. ~Kathy Link to comment Share on other sites More sharing options...
ShaesMom Posted September 26, 2009 Report Share Posted September 26, 2009 Here's a link to an article that talks about the different abx and there success rate with strep. http://www.thechildrenshospital.org/pdf/Co...-19-07COLOR.pdf Link to comment Share on other sites More sharing options...
EAMom Posted September 26, 2009 Report Share Posted September 26, 2009 We also had a ramping up of symptoms on Amoxcilllin (our dose was 250mg/day for a 44 pounder). Azith. was the ab that worked best for us (the 4th one we tried out of Augmentin, Amoxciilin, and a stronger version of keflex.) I would also definitely check all family members (throat culture!) for strep to make sure you don't have a strep carrier. We had this problem with our younger dd...our pandas dd didn't really start to get better until we discovered Azith. and her sister was cleared of her strep (with Azith, augmentin didn't work for that) carrier state. Link to comment Share on other sites More sharing options...
P_Mom Posted September 26, 2009 Report Share Posted September 26, 2009 Geez...those doses are soooo small...... when my older son went on Amox. at onset of symptoms...he had a ten day dose of 675 mg 3 x day for 10 days...he was 7 1/2 at the time...I am guessing around 70 pounds. Maybe that is why it worked for him so well...I mean really well. I took 875 mg 3 x a day (I know, I am an adult, but, still.) 250 mg a day????? that seems ridiculous to me.........that is smaller than proph. dose! Were they trying to clear her of strep??? Link to comment Share on other sites More sharing options...
Lena_Dmom Posted September 26, 2009 Author Report Share Posted September 26, 2009 First of all - thank you ALL for finding the time to reply to my questions. You're the best! Vickie - I think we have seen a plateau perhaps 5 days into taking Amoxicillin... and then it seemed to start going downhill... He has pee accidents, VERY whiny, very needy (mommy, get this and mommy, get that while in the past he'd be perfectly self-sufficient). Kelly - he's 3.5 years old and weighs 40 lbs. I too wonder if 250 mg x 2 day might not be strong enough. In fact, my husband said from the day one "why play around and waste time and his GI health? Put him on something strong and potent and kick this bug once and for all..." Now I wonder if he had a point... ShaesMom - this is his first episode that we're treating as a PANDAS episode but he had tics on and off for about a year, etc. However, to your point about developing resistance to Amoxicillin - he was on it probably monthly from about 4-5 month of age until about 1.5 years of age for recurrent ear infections (the usual 10 day course). When we first started this time around (in August) - he had an ear infection, an inflamed lymph node and PANDAS galore all at the same time. So he was put on 10 days of Amoxicillin and seemed to respond well. We even though his tics went away... Then he was off Amoxicillin for perhaps a week until we got a hold of his Dr, all agreed that he has PANDAS and got our next Rx for Amoxicillin for 2 month course... Smartyjones - our DS is on Nystatin too. That is to try and battle his yeast that flares up every time he's on abx. He's also on 2 probiotics and activated charcoal to wipe up die off effects of yeast... EA Mom - great suggestion about checking for strep both my hubby and me. We'll do that! So, the consensus is... give it another day or two (to get to the famous 14 days) and if nothing changes - call the Dr. and ask for either a higher dose or rather a stronger abx (seems to be the preferred option)? Thank you, again! Lena Link to comment Share on other sites More sharing options...
ShaesMom Posted September 26, 2009 Report Share Posted September 26, 2009 First of all - thank you ALL for finding the time to reply to my questions. You're the best! ShaesMom - this is his first episode that we're treating as a PANDAS episode but he had tics on and off for about a year, etc. However, to your point about developing resistance to Amoxicillin - he was on it probably monthly from about 4-5 month of age until about 1.5 years of age for recurrent ear infections (the usual 10 day course). When we first started this time around (in August) - he had an ear infection, an inflamed lymph node and PANDAS galore all at the same time. So he was put on 10 days of Amoxicillin and seemed to respond well. We even though his tics went away... Then he was off Amoxicillin for perhaps a week until we got a hold of his Dr, all agreed that he has PANDAS and got our next Rx for Amoxicillin for 2 month course... Thank you, again! Lena Based on what you said above--I would guess that this is likely not his first Pandas episode. Ear Infections can be caused by streptococcus pneumonae. My guess is this last go around that the amox probably decreased some of the infection but obviously did not kill it. I would think with him being on Amox that often that he has developed a resistance to it. If you've read SFMom's post you'll see that Dr. Cunningham is thinking that Pandas may be caused by other forms of strep including the kind that can cause the ear infections. Amoxicillin is a form of penicillin and there is research showing that certain strains of strep are becoming resistant it. IMO-try a different abx asap. Link to comment Share on other sites More sharing options...
EAMom Posted September 27, 2009 Report Share Posted September 27, 2009 oops...I see I wrote that we were on 250mg/day of Amoxcillin...actually it was 250mg TWICE a day. (Now we are on 250mg/day of Azith...no wonder I get confused!) Link to comment Share on other sites More sharing options...
Lena_Dmom Posted September 30, 2009 Author Report Share Posted September 30, 2009 Well, moms, you were right. If we did not see any improvements by day 11, we saw nothing more promising by 14 days. In fact, his tics are worse now. His moodiness is too - in fact he even told me yesterday (after a bite incident at daycare when he bit a kid) - "mommy, I am a bad guy today." So finally I got our doctor to call in an Rx for azithromycin. I know that there are various abx for PANDAS. We have never tried this one before. So we'll give it a try (keeping my fingers crossed). He's also on Nystatin 200,000 IU x 2 day to help with yeast. So we'll see. I am being all cautious - washed his toys that he sleeps with, got him a new toothbrush... and off we go with the new abx (starting tonight). Gosh, have I told you lately how much I HATE this PANDAS thing?! Thank you for your advices! Keep 'em coming! Lena Link to comment Share on other sites More sharing options...
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