P_Mom

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Wow........so sorry. It blows my mind away how the strep can still be there. I pray you get this dang strep cleared and she enjoys some relief (and you, too). Maybe something other than zith for prophylaxis....in lieu of the resistance? I don't know....so bizarre. Clindamycin is supposed to be the "for sure" strep eradicator.....I really hope it works for you!!! By the way...my older son had the floating arm thing at sudden onset when he had multiple motor tics, etc. His arm (just the right one) would float up and over and then come down. Sometimes, when he would take a drink of something...it looked like he was doing a "cheers" type thing before he would take a drink.

Thank you, Sheila for posting this! How awesome PANDAS is starting to get the recognition it deserves!

Jill...as to it spreading....I am sure you saw this .... ''The Pittsburgh clone or other resistant strains may already have spread elsewhere,'' Dr. Huovinen said. ''This macrolide resistance situation has to be determined everywhere in the United States.''

Dedee, Glad to hear you are headed toward some relief. may I ask....what is the "real fix?"

Jill, In Swedo's original study.....it was recommended to use Penicillin over Azith because of resistant strains of strep in the East coast. It would be my assumption that it could easily spread...meaning that the resistance is more widespread now. Or, could it have burned out..(if there is such a thing)? I can tell you that we all had strep when this mess started. My husband had to take Azith because of a Penicillin allergy (suspected..not confirmed..but, taking no chance)...anyway, the Azith failed to eradicate the strep in him......docs chaulked it up to resistance and put him on Clindamycin. So, I have seen it happen here first hand. Can't answer your questions for sure...but, I personally would not feel comfortable using Azith as a strep prophylaxis. We haven been doing either Penicillin or Augmentin for 4 years now and have had no breakthrough strep. I don't know about other docs...but, Latimer suggests Augmentin for us.

My thoughts on the teeth...... When a child loses a tooth, bacteria that are normally in our mouths are relaesed in to the system. Whether they are on antibiotics or not, an immune system is mounted anyway, hence the flair. But, the child never actually gets any infection...just the immune response. Just a guess here, too.

Because you are on the east coast and there are some resistant strains of strep lurking around (to azith)...my vote would be Augmentin for strep prophylaxis. My boys have been on it and are doing well with it. 2 x a day sounds good to me. I don't do anything different with the antibiotics with a viral illness, unless I see a big enough flair (a small flair I would just wait out)...I will up it for about 5 days just in case. It does usually help things settle. Best wishes to you. kelly

My youngetr son did this with food. Bites out of stuff, put in fridge to "save" for later...bites out of something else...put in fridge to save...etc. He never went back to finish what he saved. It was part of his hoarding issues at the time. As far as beverages...he didn't hoard them...but, he drank A LOT in his big exacerbation.

I am really not sure on that. Let us know after you call. Just curious...are you not satisfied with your PANDAS/Immunologist doc? (trying not to name names)

No. By the way...nice level of IGA! Did you ever get it checked when you were younger?

100% sure PANDAS for both my sons. No Lyme, co-infections, myco, etc. involved here, either.

While virus was active....ours lasted about 3-4 months. The virus is dormant now.

Oh......I was referring to the PANDAS paranoia a parent feels. I see you were coming from the perspective as a PANDAS sufferer. Understandable. I do think, (from a PANDAS sufferers perspective).... Dr. K is right when he says that the anxiety sticks...but, I hope it stays minimal/manageable.

Thanks everyone for your replies and suggestions. There have been no bug phobias, reassurance questions, etc. since that one bath this past week. Just a glitch, I guess...a kid being a kid. Does the PANDAS paranoioa ever go away?

. double post

Thanks guys. Bill...interesting way to guage the ocd. I'll have to think about that in terms of how I (or my husband) can do that with my son in a way to apply it to him so we can see if there is "something" going on that is more than we think. And you ae right...some non-ocd people would freak in this circumstance, too. Eljomom....yep....4 years ago I wouldn't think twice about it...but, that has changed. I am not too concerned right now....I'll see how long it lasts and if anything else creeps up. He did easily get into the tub and took the bath....just that incidence in the beginning. I know that many say not to give into OCD if at all possible. I agree with that but I know sometimes it is impossible. My son is basically well so I think he can handle it. I am thinking this is a PANDAS related OCDish thing because of his cold. (and he wanted me to hang around with him in his room until he feel asleep... classic.) It worked well tonight with the tub/bug thing. I would try before when he would show his OCD stuff to not give in...but, I never did it in such a blunt way. Before, I wouldn't give in in a kinda "reasoning" sort of way. I'll have to try the blunt approach more often and see what happens. We'll see if he does it at next bath time.

Okay....brief recap. Of my two PANDAS sons...my younger has always been the one I worry about...although he is doing well....you always worry. Anyway, he got his tonsils out in November and the mild remaining "stuff" went away. He got through 3 illnesses without any flairs. He just got another cold this week (last URI was a month ago)..and I am seeing mild stuff creep up. No crisis...just the mild things he had before.(I am thinking bucket theory) A year or so ago, while he was in the tub, a giant thousand legger fell from out of nowhere into the tub right in front of him. Of course...this was startling/upsetting. It would make me scream! For a bit after that happened...he would always make sure I checked for bugs before he got in the tub. He would ask me a couple of times if I was SURE there were no bugs in the tub. I would always check and always reassure him. Well.....he is doing it again. Tonight, he got in the tub no problem, but, then told me he was worried there were bugs in the tub. I first assured him there wasn't. He was still worried, so, I asked him what would happen to him if there was a bug in the tub. He said it would bite him. I just told him it wouldn't and left. He was okay for a few minutes, and, just while I was starting to get something done that I needed to...he was yelling for me to come upstairs. I asked why from the bottom of the steps and he wouldn't tell me. I told my ohter son to go see what was up because I was busy. He wouldn't tell him, either...just kept yelling for me. I got aggitated because I just needed a few more minutes to do something...but, since he was yelling for me...I went upstairs and while I was going up I told him it better be important. When I got there I asked what was so important. He sunk down into the bubbles so his little face barely showed. He, in a little voice, says..."but, mom...what if something ELSE gets in the tub?" I was still so irritated (time of the month isn't helping )......that I just said...."well then, I guess it will just gobble you up." I turned and walked away. Funny thing is, he didn't say a word or complain once after that.....he happily splashed around for the rest of his bath without yelling for me or asking questions. I felt bad and apologized afterward. But, maybe it was a good thing?

We were all tested...negative

Dedee...was she sick at all recently with anything? I mean, before the draw?

Interesting response to some good questions.?? Questions that deserve to get answered since it is "MCIDS" for many.....(as previously stated.)

These are just notes from some guy who attended the ILADS conference in 2010. All I saw was one line saying that, at this conference, Dr. Horowitz proposed that chronic lyme is actually MCIDS. Is that it? Was his proposal accepted? Is there any literature on this syndrome that many of these kids are proposed to have? So many are wondering about/considering their kids to have this.......you would think there was some more info. out there. I am sure you have some links. Maybe I missed something.

Is "Multiple Chronic Infectious Disease Syndrome" an actual syndrome? I can't find any literature/studies on it.....just some stuff about parents on a Lyme board coming up with the syndrome/term themselves.....said that a LLMD suggested it. I know there are many here who would like to learn more about it.

PANDAS 16, To your original questions...yes. And, it is not strep in the brain. Read Cunningham's studies on PANDAS and molecular mimicry.