Burnell Posted August 2, 2011 Report Share Posted August 2, 2011 Our DD 12 was treated with IVIG in the NIH study on PANDAS in the spring of 2011. The first treatment turned out to be a placebo, and during the 6 weeks her OCD became worse. Three weeks after the real IVIG, she began to improve alot. By 6 weeks post ivig, she had a significant reduction in both the length of time spent and severity of her OCD symptoms. At 8 weeks post ivig, she had a one bad night. The 9th week, she had more of her symptoms return. At week 10, her OCD and other symptoms had become worse, more often, and lasted longer in duration than before the ivig. We are currently awaiting blood testing results to determine if there are any antibodies that would lead to an explanation of her having picked up an infection, strep or other. My question for you who have ivig experience is this: Does ivig only last 8 weeks and then diminish or should it last once it takes hold? One theory I had was could the prophylactic abx (amoxicillin 1/day) she was on have been too weak/ too infrequent and allowed her to pick up strep or something? Link to comment Share on other sites More sharing options...
thereishope Posted August 2, 2011 Report Share Posted August 2, 2011 (edited) Amoxicillin once a day was the prophylactic given by those that ran the study? Just want to clarify. Edited August 2, 2011 by Vickie Link to comment Share on other sites More sharing options...
momaine Posted August 2, 2011 Report Share Posted August 2, 2011 It really depends on the child. My dd who has PANDAS/PITAND and has been clinically diagnosed with Lyme and bartonella does begin to decline after about 7 weeks post IVIG. I wish that most of these kids got IVIG once and were fine, but I'm not seeing that pattern on this forum. Also, once a day Ammox isn't enough to keep a child from getting another infection. I'm curious if they did a thorough evalutaion for Lyme on the kids in this study? (Igenex) Link to comment Share on other sites More sharing options...
Burnell Posted August 2, 2011 Author Report Share Posted August 2, 2011 yes, the study docs gave us amox, once per day as the prophylatic. No lyme tests were done w/ study, but we had had them done before and she was negative. Link to comment Share on other sites More sharing options...
EAMom Posted August 2, 2011 Report Share Posted August 2, 2011 (edited) Amoxicillin once a day was the prophylactic given by those that ran the study? Just want to clarify. @ VIckie, here's an article using a higher dose (750-1000mg) of amoxillin 1x daily to treat strep http://www.ncbi.nlm.nih.gov/pubmed/16940830 But, it still doesn't make sense to me since the 1/2 life of amoxicillin is 1-1.5 hours (vs. pen 20 minutes) that this would be effective, esp. in PANDAS kids which do not seem to have a good immune system against strep (are more prone to getting strep) and don't seem to clear strep as easily as "normal" kids. ??? Anecdotally it seems like there are plenty of pandas kids on this forum that get strep on once daily amoxicillin or augmentin. @ Burnell, What is the dose your child is getting (and how big is your child)? Is it an extended release version? (eg. http://www.rxlist.com/moxatag-drug.htm ) Also did the study throat culture family members (or otherwise check them for strep)? Also, did your child recently have any other illness (viral, fever) or anything else (dental work?) that may have triggered symptoms? My dd relapses after any illness where a fever is involved (even 1 day). We've had 3 IVIG's over the past 2 years. The most recent IVIG (2 weeks ago) was b/c she started to exhibit increased pandas symptoms 2-3 weeks after a viral infection/fever in feb. We were hoping things would blow over on their own (she's been on azith 250mg the whole time) but it wasn't, getting worse over 5 mo. Edited August 2, 2011 by EAMom Link to comment Share on other sites More sharing options...
Burnell Posted August 2, 2011 Author Report Share Posted August 2, 2011 500 mg amoxicillan once a day, not extend release. Only cultures were the ASO and DNase B. Link to comment Share on other sites More sharing options...
EAMom Posted August 2, 2011 Report Share Posted August 2, 2011 500 mg amoxicillan once a day, not extend release. Only cultures were the ASO and DNase B. So they didn't do any throat cultures on your child or family members? Did they do ASO antidnase b on family members, or just your dd. Also, check above...I added (edited) my previous post, don't know if you saw it all. Link to comment Share on other sites More sharing options...
Worried_Dad Posted August 2, 2011 Report Share Posted August 2, 2011 Our ds did very well for about 8-10 weeks after IVIG round 1... until another infection erased the progress and eventually led to an even more severe exacerbation. He, too, was on 500 mg of abx (augmentin) once per day for prophylaxis. For him, that dose did not work. Once we obtained treatment-dose abx (augmentin XR - 1000 mg twice daily) for our ds, he began to make steady progress that he's maintained for almost 2 years now. The dose is critical, in our experience! Link to comment Share on other sites More sharing options...
Iowadawn Posted August 2, 2011 Report Share Posted August 2, 2011 It really depends on the child. My dd who has PANDAS/PITAND and has been clinically diagnosed with Lyme and bartonella does begin to decline after about 7 weeks post IVIG. I wish that most of these kids got IVIG once and were fine, but I'm not seeing that pattern on this forum. Also, once a day Ammox isn't enough to keep a child from getting another infection. I'm curious if they did a thorough evalutaion for Lyme on the kids in this study? (Igenex) Your pattern was our pattern more than once! And now we are treating for the same things. Dawn Link to comment Share on other sites More sharing options...
thenmama Posted August 2, 2011 Report Share Posted August 2, 2011 (edited) xx Edited March 27, 2013 by thenmama Link to comment Share on other sites More sharing options...
tpotter Posted August 2, 2011 Report Share Posted August 2, 2011 It really depends on the child. My dd who has PANDAS/PITAND and has been clinically diagnosed with Lyme and bartonella does begin to decline after about 7 weeks post IVIG. I wish that most of these kids got IVIG once and were fine, but I'm not seeing that pattern on this forum. Also, once a day Ammox isn't enough to keep a child from getting another infection. I'm curious if they did a thorough evalutaion for Lyme on the kids in this study? (Igenex) Your pattern was our pattern more than once! And now we are treating for the same things. Dawn I have 2 kids who received multiple doses of IVIG. DS18 got tremendously better (even his social skills jumped from about 7 years to about 14 years, and now he is "learning" what he hadn't learned before. He's also not as sick, and so far it has held. He is also diagnosed with Lyme, but it doesn't seem to be affecting him the same way as DS15, and IVIG seems to be holding for now. DS15, on the other hand had the same problem as you and the other 2 moms above. Only, he started declining about 3 weeks after every IVIG (did it a total of 6 times.) Now being treated for Lyme, Bartonella, Babesia, Erlichiosis, and he was exposed to mycoP through me (only found out, because the doctor tested both DH and me, as well as the kids.) He was diagnosed clinically, because the blood tests came back negative (except erlich, which FINALLY came back positive after starting treatment. That being said, many PANDAS only kids (and there are those), still need more than 1 IVIG. Your child may need that, and I also agree that once a day amox is not enough for prophelactic. Link to comment Share on other sites More sharing options...
airial95 Posted August 2, 2011 Report Share Posted August 2, 2011 I've heard that ammox isn't the greatest abx for treating our kids - most use azith, augmentin, omnicef, etc... Just a question to throw out there, are they keeping the proph doses of abx low and using ammox to try to differentiate between improvement from the IVIG vs. the abx? Link to comment Share on other sites More sharing options...
nicklemama Posted August 2, 2011 Report Share Posted August 2, 2011 (edited) Our experience has been mostly positive post IVIG. DS is nearly 13wks post. He had two "incidents" where he backslid quite a bit. One was when he was exposed to a child diagnosed that day w/ strep. The child had a positive rapid test in the morning and the parent saw fit to take the sick child to the swimming pool and then to the fireworks that evening where DS played w/ him both times. I gave him treatment dose abx, 500mg augmentin bid 5days, for him, age 7 57lbs now. We saw a turnaround. The other incident was when he lost two teeth in one week. We saw his symptoms increasing and we went back on treatment dose again for 5 days. He is taking 250mg augmentin sid as a prophylactic. He's doing very well. Probably 95% at this point. You guys are worrying me that the prophylactic dose is not enough. ETA- I, too, am surprised they are using amoxi. Edited August 2, 2011 by nicklemama Link to comment Share on other sites More sharing options...
thereishope Posted August 2, 2011 Report Share Posted August 2, 2011 It is in their criteria that the child cannot be allergic to penicillin http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969 but I just assumed it was going to be pen vk 250 twice a day. Link to comment Share on other sites More sharing options...
momaine Posted August 2, 2011 Report Share Posted August 2, 2011 yes, the study docs gave us amox, once per day as the prophylatic. No lyme tests were done w/ study, but we had had them done before and she was negative. By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too? Link to comment Share on other sites More sharing options...
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