eljomom

Funny---my dd7 has a lot of tics (some ocd) and hers was 4000! Dr. L said its not surprising that she has so many tics with that one.

What is the best way to determine "carriage?" We saw I.D. doctor yesterday (sent to by our pandas doc) and she seemed to believe that it's almost impossible to completely eradicate (well, to KEEP eradicated) in a carrier....meaning, you can treat for it (bleach baths, special gargles, nasal mupirocin) and even clindamycin, but as soon as that carrier is even exposed to strep again, they will be back carrying it. So she didn't even test anyone for it

Going to take a stab at this.....from what I have been told, the probiotics will counteract anything the antibiotics are doing...they sort of work against each other. Now that I've typed this, I realize that probably didn't help at all. I've heard different things over the years about this....some have said no probiotics until entire course of abx is completed, others say you can give at the same time...no worries. It just seems to make the most sense to me to separate them as much as possible, as the two different types of "biotics" are antagonists???

I took Clindamycin briefly a few years ago for Cellulitis/suspected Lyme.....they told me not to worry about the 8 hours...just to make sure to space it evenly during the waking hours. I would highly recommend probiotics with it though, as I developed diarrhea within a very short time on it. At the time, I was told NOT to take probiotics until I had finished the whole course of clind., so i believe it would have helped to start it sooner.

Well, this is gonna be one for the books, if we have to go the route of getting it removed My oldest had to have one removed when she was about this age...they cut it out with a scalpel, after giving her a shot to numb it....which didn't take...she was FREAKING OUT ( and this is one of my non-pandas kids)....had to give her another shot (with the nasty doctor sternly telling her there was NO WAY she was feeling anything). After the second shot took, dd was quiet, albeit shaken. Oh, please, please let us NOT have to get the wart cut out...please!!! Enough already

HOw can you tell if the virus is "dead"?

Can you tell what kind of allergy testing you had done that you found useful? Especially for food?

Yet another discovery, pointed out to me by dd7 ... she showed me a spot on her foot that "hurts when you press it." Looks like a very new plantars wart. ARen't these caused by a virus? If so, could this have any impact on symptoms??

Pandas16---thanks for that explanation. I wonder then how you make IVIG/PEX work, other than keeping your child in a bubble, away from any source of infection?? Also, you seem to have a great source of info.....when you talk about inflammation, do you just mean inflammation FROM infection, or could food sensitivities have an impact? OR is that totally different? Our pandas-doc seems to poo-poo food/environmental allergies or sensitivities.

I agree with this statement Pandas16, to an extent, and this is where my confusion comes in. If truly just getting rid of the strep antibodies by getting rid of the strep infection would work, then antibiotics alone should do the trick. The problem, as I understand (and I may be TOTALLY wrong here), is that because of molecular mimicry, the strep antibodies start to attack the nerves in the basal ganglia, which it is seeing as strep. Then there are the B cells, which remember this, and I know the basal ganglia isn't going anywhere, so it seems like the anti-host antibodies would just continue to be produced??? I mean, it's not JUST the strep antibodies that are the problem. Everyone makes antibodies to strep when they have it. The problem is that in pandas kids, there is a snaffu, and the antibodies wrongly attack the b.g. and not just the strep. I don't know if that made a lick of sense, but that is what I wonder about why PEX or IVIG would be a cure, if the antibodies are still being produced....

If the anxiety sticks, then what does the PEX help? Isn't anxiety sort of the catalyst behind all the other stuff---rages, ocd, tics, etc.?? Wow, this is confusing!

I've never heard of doryx....wonder why you switched from zithro. if it was working? Can you switch him back? I personally have taken doxy, not doryx, but if it's in the same family, unless I took it with food, and I mean WITH food, it really did do a number on my stomach. Could it have been the pizza? or even just a stomach bug? I know, sounds waaaaay too simple for our pandas kids, and probably is.

Can I ask what abx your son was put on? Some of them are said to have anti-inflammatory and immune-modulating effects....we too have tics that are not responding to low dose zithromax....curious what helped?

This morning, dd and the egg: I drop a hard boiled egg and it cracks before I peel it, and she says "I'm not eating that one." I told her the inside is fine...it didn't touch anything. Last night, dd and the egg salad: I have my 3 girls, my son, 3 of my sons 11 year old friends, my 13 year old's friend, my friend and her 11 year old daughter.....running amuk, boys just got back from wrestling practice, dirt, germs galore.....and I find dd 7 (pandas) in the kitchen eating egg salad (yes, with mayo, slimy, etc...) out of the container with her hands....full on schlopping it right into her mouth with her filthy, grubby grabbers......yet, she won't eat the last bite of her own sandwich, chicken nugget.....

S&S---YES!

HOw is it that a child can have germophobia....can't eat anything that has been touched, breathing in her direction, etc.... BUT.....she can cut up a KIWI on the nasty, unwiped kitchen counter and eat it, no problem. Now THAT is NASTY to even me...I would be grossed out eating off my countertop!

Just saw in another post from thenmamma about Dr. L testing Complement. Can someone tell me what test that is, and what it tests for? I asked Dr. L yesterday about C3D and she said she didn't know what she would do with that information. I think I thought C3D WAS complement??? Although I have no idea what it means. Thanks.

Wow---it sounds like you had a great visit!! I am so happy to hear this:) It was nice meeting you in the waiting room...wish we'd had more time to chat. Please keep us posted on the progress and process. Wendy

Pandas doc is sending us to Infectious Disease doc...too emotionally and mentally drained to post more tonight, but will tomorrow

SF Mom--how do you test B cells?

Okay, so how do the auto-antibodies receed, if they are basically remembering (B cells?) that the basal ganglia is "strep" -- and the basal ganglia ain't goin' anywhere??? This is a huge unanswered question for me!

MOMOFGIRLS--thank you!!! When i first started reading your reply, I thought---"yes--she's agreeing with me about this just being autoimmune at this point!"---but I have to say, I am NOT comfortable with steroids yet, as my "gut" is telling me that there may still be something underlying. I do think it's "both" at this point. Other than Lyme, strep titers and myco p titers, we have not looked for anything else. I hate what these antibiotics might be doing to her. That scares me. I wish I could get enough of a response to think "maybe" they are helping. I will discuss with pandas doc today, but not sure this particular one does much digging for underlying stuff:(

Thanks guys:) Question though...the staph was back in July, August and September. Early Nov., thought I was a little bit of another skin infection starting, but put mupirocin on and it was better. So would there still be any reason to think staph was an issue at this point???

DD7 has was on Augmentin for one month. Might have maybe, maybe, maybe seen a tiny bit less ticcing around week 3, but then exposed to stomach virus, and back to "baseline" of the same plethora of tics and ocd-ish stuff as when it got bad this summer. Switched to Zithromax (100 mg/day)---dd is 45 pounds. First week was he!!ish, with her hardly eating, etc. Then we've had a few days here and there where there seems to be a little less tics/compulsive tics, but then within a couple days, back to the same 'ole, same 'ole. We have noticed lessening of separation anxiety during the day. Remember, she was caught late in the game, after possibly a couple years without treatment from when some of the mild ocd started, and months after the 1 day high fever and 3 straight months of off and on impetigo (STAPH) that she finally had 10 days of Augmentin for, with no help. Finally started abx mid november. Since I can't say as a whole we have seen any benefit at all, I was thinking of asking for a change. Even though in my heart of hearts, I feel we are in autoimmune phase 2 , where we are past antibiotics being truly helpful. Wondering, based on her history, with recurrent URI's, the staph, etc....would anyone recommend Keflex for a trial? Or asking to up the Zithromax? Or Augmentin XR, back to Augmentin???? Or Omnicef ( what the heck is Omnicef anyhow)?? Just lookin' for input, as we go tomorrow for follow up. Thanks.

Back in January, dd7 (pitand/pandas dd) and ds11 both had sore throats, low fevers (not more than 100 if that), and after a couple days, got a rash on one side of their mouth spreading toward the cheek, about the size of a half dollar or so. He had slept in bed with her leading up to and during this time (yes, I outsource my other kids for the nighttime separation anxiety)..their throats also had red blood vessels visible on the back but didn't seem ######. They were not acting sick, just sore throats, and a bit runny noses. I called our pandas doc to see if there was any point in taking to the ped. for a throat culture, since she is on 100 mg. Zithromax----I thought (mistakenly, I now learned) that you couldn't get strep on abx, and that cultures would be negative. Doctor never called back, and I let it go,thinking she would called have if it was important to have her tested. Finally, after days of the rash, as it started going away, I got a call back and they said i should take her in to ped. So I did, and ped. looked at it and said it looks like healing from chapped skin. Very weird that BOTH of my kids that got it, got it on the same morning, after sharing a bed for days, same sore throat, only on one side of mouth, just weird. So no culture was done. So, jump forward to today.... I was talking to a mom at my son's writing class, and she was telling me about how her kids never tested positive for strep when they had a sore throat, but that one time all her daughter had was a little red rash by her mouth, and no other symptoms, and it was strep!!!!!! Anyhow, I took a picture of the rash back when it was there (Jan. 12th)---the ONE THING I have actually thought to do that might be of any value, and just looked at it...wondered if anyone here is able to look at rashes and tell if it looks "streppy?" Really just curious at this point. I would love to post it to see if anyone can look at it and tell me if it looks streppy. Is it safe to post a pic of a child here? And would any of you be good at ID'ing a strep rash? Thanks, wendy