Suzan

Great idea! My 8 yr old dd who is touch sensitive and does not like most people (especially her sister) to touch her (or hug or kiss) is now sometimes starting wrestling matches with her and they are rolling around on the floor with each other laughing instead of screaming and crying. It doesn't last long, but it is thrilling to see. It is because of our increased abx. Susan

I am sooo jealous

http://www.ncbi.nlm.nih.gov/pmc/articles/P...o00112-0093.pdf I found this.... I read the short version and the discussion, now I have to go back and find out what all those acronyms are, this could be helpful in our case since we have low titers. I'll ask our immunologist about it this Friday. Susan Edit, PS... super old paper, maybe more recent info available...

My 45 lb dd is on 250mg a day. It sounds a little on the low side. If you fee there is no progress, I would ask for it to be increased to 250mg. I'm glad your doc is working with you! Susan

Oh yeah, snakes! DD8 Age 2-3 Flies Age 5-current Yellow Jackets Only serious during episodes - airplanes flying into the house, someone getting into the house to get us, emergency vehicles, public transportation DD7 (only serious during episodes) Snakes Bugs and spiders of any kind Sharks Death

DD8 had her drastic improvement on 500mg of zith daily. She improved within 1 day. Before that she was on 250 mg daily since around July and she had some initial improvement but eventually started failing. We increased her zith around November 1st. She did well until I decreased her meds at Christmastime. She weighs 72lbs DD7 did her best on 250 mg daily (started in July and did that for about 2 months). She was like another kid. She did OK on 250 mg every other day but has been slowly failing so I hope to see her improve on her dose increased back to 250mg every day. She weighs 46 lbs. Susan

After reading the quote posted by Buster, we may be considered chronic as my girls got this condition when they were so young that we didn't see the sudden onset. If they had been older maybe we would have, and they have gone through many different variations of symptoms and they did wax and wane. The treatment that is working for us is getting on a high enough dose of zithromax. We have not yet gone through IVIG or PEX. I imagine we will stay on this dose until further notice at this point. Susan

I've got the new plan from Dr. T (I think I was using a incorrect email address but it wasn't that long since he and I had spoken anyway....) We are going to keep both of my girls on zithromax since they seem to do so well as long as the dose is enough. So 500mg daily for dd8 and 250mg daily for dd7. Yay, I am very happy! I hope to see some improvement with dd7 too, she has been on 250mg every other day and starting to struggle. Susan

It took about a week but she does seem much better. I'm still cautious. I increased her to 500mg/250mg alternating days (basically increased every other day). I think if I would have increased back to 500mg daily I would have seen a faster improvement but I'm scared of running out of abx before getting the new scripts. Susan

Hi! I have not heard back yet from Dr. T but I have requested the increased dose of zith and/or clindimicin from him. I hope to hear by the weekend. He agrees that she needs higher doses and needs to stay on it so I don't think there will be any trouble once we get the new script. She is doing better though, I guess what I did increase is finally working. The wiping has not been an issue yesterday or today so it looks like it's not strep and was OCD. I have not looked at your link yet but I will later today. We go to see Dr. O on the 15th so I am anxious to update her on our trip to NY. Thanks for checking on us! Susan

Congrats on the new Babe! I would run the strep titers for sure (although if they are low that does not mean no strep). Also, can the skin be tested for strep?? Does she have any vaginal symptoms? If she has anything that you've been thinking is yeast, I'd ask for a culture there too. GOOD LUCK and I can't wait to get your Dr. Latimer update. Susan

Hello and welcome and good luck to you. I hope you find the help you need there! Susan

Hello and welcome. I am glad you found us and glad you found the strep connection. My 7 yr old is a counter too. She will count how many steps it takes to do things and will go over it a lot. A lot of her OCD stuff is around food too. Anyway, just wanted to welcome you although I am sorry you are here with us. Susan

No word yet. I'll try to call him soon if I don't hear back. Susan

Thanks for the dosing. I guess I could have looked at the bottle I'm sure what she is going through is not hormonal changes yet. Today I feel fairly certain it's OCD. She said she wiped a lot at school and took a lot of time in the bathroom. This morning she seemed OK. I don't know whether to wish for strep or OCD, lol. She is still not well but at least she had a good morning. Susan

My 7 yr old still can't swallow pills so I get everything in a capsule and sprinkle them in a smoothie or yogurt or pudding, etc. That way it opens up your options. I really like Threelac though and it comes in a powder. Susan

Oh good luck! I hope the flight goes well and the appt too! Hang in there.....!

She turned 8 in August. I started mine when I was about 13 yrs old. I think it was the 6th grade. Using that theory she'd have a good while more. But you never know right?! She weighs 75lbs so I'm thinking maybe I could give her 400 for a while?? Or does that sound too much? She said she was angry all day for no reason. I can tell she's on edge, she managed to get through her homework but just barely. Susan

Ack!! If there is wetness, I will take her in for a swab Dr. T wants to put her on clindimicin in addition to the zith so maybe this would help? I need to call him when I get home.... ajcire - I'm guessing from me reducing her abx, but I just don't know.....

Here's a start, others will probably have some to add... IgG and subclasses IgA and subclasses IgM IgE Strep Pneumo 14 sero types EBV HHV6 Lime

OK, got it, it could be either, makes more sense that it would be OCD though since she's on so much antibiotics. I'll check her out tonight and let you know and if you find that link I'd be interested....

I guess the telling factor will be whether her underwear gets wet. With the v. strep, there actually is wetness and it will soak their underwear. With the OCD you describe, there will be no wetness, right?? Susan

Hey Faith.... yes she was absolutely doing well on the 500mg daily. I THINK she was doing well on the 500/250 mg plan. But the reduction to 250mg day was noticeable within less than a week. She is still on the valtrex, no change there. I have her back to the 500/250 but maybe she needs a run at the higher dose again. Regarding the wetness, I have to tell you, this morning with the way she was carrying on, I thought, "please let this get resolved before she gets older and has the normal fluids flowing!".....But seriously, before we learned about v. strep, I always thought it was a yeast infection. Now there is a very distinct difference. This is like water and they think they don't wipe well enough and they keep wiping and it won't go away. dcmom, it's surely sensory, but I just don't know if it's strep or not... I'll see if it continues tonight or tomorrow....Maybe she is just getting older and her body is starting to go through some changes although I thought that a year ago right before our big pandas episode. Plus, the poor thing was so stressed, she put on underwear with a hole in it and that was driving her nuts. I asked why she did that and she said "because it's what you gave me!" Susan

OK, so I know I screwed up and reduced my dd8's antiboitics back to 250mg daily. She was doing super well on 500 mg daily. Our immunologist wanted me to reduce her to alternating 500mg/250mg daily for a period of time which I did maybe a month ago. Our Ped. wanted me to reduce her to 250mg daily after being on Valtrex through December. So, I reduced her again. She probably was not thriving on the alternating 500mg/250mg anyway and reducing it more threw her back down. She's really struggling and this morning, I heard those dreaded words "The wettness is back". That means vaginal strep for us here. Could it reallly be that she could show these signs of strep being on so much zith? She's obsessed with this wettness that is so uncomfortable and worrisome and she wants me to fix it and make it stop. She has dark circles again, defiance, leg pain, hearing voices..... I'm waiting to hear from Dr. T on what we should do regarding her antibiotics and we see our immunologist locally here on the 15th. I have her on 200 mg [EDIT - forgot to say this is her ibuprofen dose] in the am and pm. Should I increase the frequency and see if that helps? Any other suggestions? I don't have enough antibiotics to just increase her back to 500 mg a day without taking it away from dd7 who needs more than what she is getting right now anyway.... Oh the stress! Susan

Ours did, no more tummy ache on the right dose of antibiotics. Same with her roving pain, headaches, etc. Now that she is not feeling well and I think her strep may be back, it's starting to come back. s