Stephanie2

Not sure who you saw outside of NY, but Scott Smith is in Edison and has helped my boys. He does IVIG and everything else. You said that you saw a specialist last week. What was prescribed and did she get worse after starting it? Could you be dealing with die-off?

I agree with the activated charcoal test. Try that and let us know what happens. For my 6yo, he is a changed child within20-30 minutes of 2 AC capsules (if there is an active intestinal infection, which can be caused by high dose antibiotics).

Great!! What happened!!!????? Boy, I hope you get some good meds! For all the kids...

Wow, so sorry you are going through this. So glad that you are getting a good doc on board. Makes a world of difference.

If it makes you feel any better, here is a positive about having multiple pandas kids. One can be the canary in the coal mine for the other. In other words, one gets a mild tic or has some sudden onset OCD and you can get on top of both kids before the other exacerbates. The only thing is it takes time to get to that level of swift expertise! As long as I have been at this, I have yet to intercede in time to catch the second boy in time, but I am getting there. Next strep infection I'm gonna do it!!

Oh fixit I'm so sorry. Please be aggressive with him b/c you have not experienced the full-blown OCD/exorcist of pandas and I hope that you never do, especially if you have 3 boys. You have a chance now for it to never get to that point in your 8 year old. I say, drop a bomb, but take cover (diflucan, etc.)... Keep me updated...

Wilma, I would think that this is most certainly die-off but if you need something to calm her down, even psych meds, I believe you can get it from Scott. Also, I find that charcoal works better than ANY psych med...seriously!

As some of you may have noticed I have been going downhill lately! I stopped my lexapro about 7 weeks ago and the kids have had one infection after another, with all the lovely behavioral symptoms to go with it. I told DH last night that I was thinking about going back on lexapro (which I sooo don't want to do b/c it makes me feel numb, can't laugh, can't cry) and he told me to try going back to the gym first. He made me promise. So, reluctantly I dragged my butt in there this morning and decided to throw myself into a "step challenge" class! This afternoon I had so much energy and I felt so much more capable of facing my crazy boys . I was wondering what was wrong with me for letting this much needed aspect of my life go Just thought I would throw this out there in case anyone else needs a kick in the pants like I did!

They always butcher my 2yo as well. I HATE...HATE...HATE drawing his blood! Why is your ds off abx??? Everything ok?

I think a reg. doc will laugh at you if you ask to test for yeast. They wouldn't know how, anyway. Any integrative med doc or "functional" med doc (or alternative doc) can test for it. Here are the tests that we have used, both being highly accurate: http://www.greatplainslaboratory.com/home/eng/microbial_oat.asp http://www.genovadiagnostics.com/index.php?option=com_gpanel&Itemid=2&task=view&id=5 You could contact these labs and they could give you the name of a doc in your area who uses their lab.

I'm not sure about the burning sensation, but ever since I brought my youngest home from the hospital he complains about the light being too bright (as an infant right out of the hospital he would cover his eyes!). It is a common symptom of chiari malformation (which he has) and I have heard that it is also a symptom of lyme. Then again, could just be plain old sensory issues...

This is a very good point, Michael. Both of my boys made some good improvements in the past on steroids, but my 2yo clearly had some issues with his impetigo flaring after a 20 day taper. (BTW, my igenex kits are on the way!) I guess you are right that they might be playing off of each other's infections a little until they have gotten further into the abx treatment. I think today was only day 2 or 3 for ds2....not to mention I just found out that our regular babysitter's little sister just had strep - babysitter got a sore throat that cleared on its own after a few days. So maybe it will take some time (that reminds me I need to go around and disinfect the house tonight). Thanks! I didn't know that about the molecular mimicry and the bacteria being involved as well (although I think that is the case with lyme, no?)

DS6, despite most pandas symptoms being gone (day 5 of augmentin after strep), still has this cough/throat clearing tic. The way I see it I have three options, what would you do? *wait it out *add in some olive leaf (did the trick last time)...but is that safe... *add a steroid I'm already doing ibuprofen - not doing much for the tic (which is historically the case for this guy) Ds2 is much better, tic 90% gone but he's fussier than he was before I started the augmentin. maybe this is some kind of die-off or maybe the diflucan is not working...uuuugh, gonna have to study my spreadsheets (such a fun activity)...

Come on, be honest fixit, they probably think you are crazy, like the rest of our families think! LOL!

Just wanted to share with you that back in Sept my 2yo went into sudden onset pandas symptoms, very severe. 36 hours later I took him in to have a throat culture done and the rapid came back with a faint line. Then 2 days later the culture came back negative. We went ahead and treated with augmentin and he got much better. Also at that time ds6 was exhiboting fears and other pandas symptoms (which remitted with augmentin), and I had a sore throat (which remitted with azith). I am very confident that faint line was the explanation to all that.

I take 200mg 5htp, twice a day per doctor advice. I did start low and go up, no problems here. Unfortunately, I am quite dependent on this dose, if I lower it I go downhill...

using the neck vibrator on her privates is very suspect of yeast. every time my 6yo gets yeast he "plays" with his privates and wants to play "doctor" with his friends!! This is very common. Its' not b/c they itch, it's b/c the yeast makes them want to stimulate themselves (weird, I know). Also, someone mentioned that their child wanted to feed their racing brain with sugar. When kids have yeast (or bacteria) their bodies crave sweets to "feed" the yeast. This is another telltale symptom with my boys. Round the clock snacking, even in the middle of the night. Another sign is night-waking and can't fall back to sleep. My boys get very silly like they are drunk and hyper. They have been tested for yeast, the behaviors always correlate. I don't even have to test anymore...

So many factors. Could be that it is an azith resistent strain of strep. Could be that it is wreaking havoc in her gut (which in some kids will come out as behaviors). Could be that she is being repeatedly exposed by someone in the house or at school. Hope things improve, you are right it is such a rollercoaster...

OLE is olive leaf extract. We are all better for now. Will see what happens when augmentin is done and back to school! I suspect that the child sitting next to him may have been the culprit. He was sick this past week, I was there for the holiday party and watched him cough into my son's breathing space - gasp! Not to mention he has autism which makes me wonder if he has pandas/strep, too!!

I did end up continuing augmentin. Starting ds2 on it tonight.

DS6 has sudden severe pandas episode starting this past monday and by friday morning I started augmentin (on myself and him). I was hoping that by eliminating it ds2 wouldn't get it, but I don't think I acted quickly enough. By sat morning ds2 had all the signs - tongue-thrusting tic, fixated on certain activities (if I force him to stop - big tantrum), very OCD about which way I drive, very irritable. I increased his OLE and saw a bit of an improvement, but not enough. I am starting augmentin tonight. They (and I) had strep in sept. and now dec. They get it 3-4 times per year (maybe more), even when I was homeschooling the older one and both boys were home and I was hypervigilent about germs, they still both got strep (although back then they were not on prophylactic anything). Last time they got strep they were on prophylactic azith and this time high dose OLE. Does anyone think I need to consider tonsillectomy for these boys?

I tried it for a few months when my son was in prek4. I have to say that he still got strep during that time (and so did my 2yo who was also at home). I was hypervigilent about keeping them protected but it still got us. I then put him back in school right after doing IVIG (he was at his worst due to the "turning back of pages" seen with IVIG, but he did ok in school for 3 hours a day. He couldn't handle more than that. Now he is in Kindergarten 6 hours a day and he loves it. He has gotten strep twice, but once was from his little brother who was home with me at the time!! No way to isolate these kids.

We did not get throat cultures b/c I have been here so many times before so I have a good idea that it is strep. I just don't know if it is an actual infection. And let's face it...never fun to bring an exacerbating 6yo boy to the doctor for a culture, especially when I do not have the assistance of DH. I guess a 48 hour culture would give me a better idea, but I usually don't want to wait that long. Vicki, no I didn't get my own throat culture b/c I have been dealing with this sore throat/sinus infection for a week now, which followed a week of a cold virus. I started the abx tonight b/c I'm tired of being sick! My youngest is also showing some mild OCD, but not enough to treat yet. I'm hoping that by treating ds6 and myself things will resolve with him. He was telling me which way to drive all day. Points which way and says "way, way, way!". Kind of cute for now

So ds6 has had some pretty bad pandas symptoms since monday night. He does not normally react to other infectious agents (viruses), only strep. By Thursday I decided to call the doc and get an rx of augmentin. But DH talked me out of giving it to him on thursday night b/c he was thinking that it was a kid at school that was making him react. The reason we were thinking that is b/c he would wake up fine, go to school, and then come home a complete pandas train wreck. This morning, however, he expressed a fear of...wait for it....a picture of MINNIE MOUSE! He couldn't look at her b/c her eye lashes looked scary! DH turns to me and says, "I think maybe we should start the augmentin". LOL! Now that I'm describing this it's all very comical...at least for a few seconds So I gave him the augmentin this morning and what do you know...he comes home from school perfectly fine. Now if it were an actual strep infection, would that quick of a turnaround have been possible? Since today is his last day of school for a couple weeks, should I just DC the augmentin? Something else to consider, he gets crazy yeast and bacterial infections from taking high dose antibiotics (with the crazy behaviors to match). Not usually this indecisive, but this one has me scratching my head.

Well we started Augmentin this morning. I got the script the other day but wanted to hold off b/c DH said maybe it is a kid in school and today was his last day of school, maybe taking him out of that environment would clear it up, yada yada. But yesterday's meltdown/rage was so dramatic after school, DH said "kill it"!! LOL! I don't normally leave these things up to him but my brain is tired... So I started it this morning and he came home a dream!! No meltdowns, nothin. I have never seen augmentin kick in within 6 hours, but maybe that just proves that he does not have an active infection and that this mornings dose got him through whatever exposure was wreaking havoc. Do I continue the script? I'm tempted to DC it and see what winter break brings. My brain is tired