ajcire

Susan, I have to agree... next time I would ask for the swab anyway unless it is totally traumatizing for your dd... just to know but keeping in mind that it could be neg due to the azith... actually if my peds knew my kids were on the antibiotic they probably would be hard to convince to swab since they would say it would not show positive regardless. The rapid could come back positive as well in which case you would have known instantly... I know with the cultures I get the call sometimes the next day and always by the second.

Ok... so is this something that if my kid has had strep with only symptoms being tics/emotional liability/very minor short lived ocd.... that I still need to be checking for or is this important for those who don't find the strep? Wondering when Dr. T started doing that as standard to check.. I don't think that was checked with my kids when their bloodwork was done and I really hate to prick them again.

Yeah, unfortunately even my verbal kid can't communicate well in pandas tantrum mode. I just was curious as I know when I was teaching I had 2 children in my class who used ACK, can't remember the names but the electronic talking computer that I put pecs overlays on. It served a purpose but of course was still so limiting yes, but when she is in PANDAS mode (has been mostly in that mode for several years) she still cannot communicate very well. We can work on that more now that she's getting better.

peg, you said your dd is nonverbal right? Have you used any augmentative communication devices with her?

Tantrums, I know what you mean about the timeline but I think that it might be beneficial for you to know if indeed it is strep that is acting as a trigger right now just as future reference. If it is possible, try videotaping your child...you may be able to play the clip on a moblie device. That's a good idea! We only have a High 8 recorder though. Although, I guess I could bring the whole camera to the doctor to show them. I'm not crazy about waiting another week, but it would be nearly as long anyway with the Ped by the time we got the strep test result. She has been WONDERFUL but is obviously not comfortable treating this on an on-going basis alone - hence the neuro. I'm just glad we have that appointment next week!

For some reason my kids LOVE when I write things down for them. I have a pocket chart (ok, can you tell I used to teach special ed) up in the playroom and sometimes when I need them to get things done I give them each a column with a to do list.. I used to have to run my classroom based on TEACCH so I find myself sometimes still using some of the techniques from it as far as schedules. Sometimes I just write something on the chalkboard we have and tell them to check it... they love that too. It makes sense I think... it's not threatening to see it on paper, not so demanding and if the problem is processing the verbal command it would help too.

JMTho... great idea but my son already told me that icecream won't work because he will chew his icecream so I am guessing he will say the same about that. Of course chocolate truffles might sound a little better to him...

Thanks LLM... exactly! We wasted 2 antibiotic pills and unfairly I was totally annoyed about it. I need to not fight this and get him the liquid until he's ready while practicing with other things that are safe for him and "safe" to waste He is willing to take the liquid without any fights... I just wish he could see that once he can do this it is not a big deal at all.

Thanks for the ideas. I find that while he is motivated by many bribes when he gets his head set that he won't do something, he just won't do it I am going to try the mini candies and see if he will practice with those... and maybe putting it directly on chocolate syrup on a spoon rather than in the milk will work since he loves the syrup. Dcmom, I did that before where I mixed it at home... for some reason the dr. just wasn't getting how I needed the script to be written. I had seen a different dr. last year who had it set for me that I got the month supply and I mixed it with distilled water myself. I have a feeling I need to revisit this and get explain better to the dr. how I need it. Pills seemed so much easier and for a moment, a very short moment I thought I would be able to talk my ds into this... He doesn't fight the idea of taking medicine... just the pill issue.

My ds is 7. He is supposed to be on azith prophylactically but I can't get him to take it. I could go get the liquid but it will end up being ridiculous with copays because of how long the liquid lasts... I have the pills here. He absolutely refuses to try to swallow it. I have offered to put it in icecream (so it would slide down), in pudding, applesauce, in anything. Doesn't work. So I went to crushing it but of course it tastes completely awful. He won't take it crushed in a spoonful of something but will take it in chocolate milk but then most of the medicine sticks to the sides of the cup. I am concerned because I have no idea what he is getting that way and I won't give it to him that way anymore.. fairly sure the 2 times we tried he got less than was left in the cup and I just feel awful knowing how totally disgusting it had to taste for him. I really know he can swallow it but he is terrified. He doesn't have any ocd choking fears or anything but with this he is definitely afraid of choking.. I understand his fear of it and know a lot of kids have trouble with this but I so need him to ANY ideas that are practical to do a couple of times a week before I have to try to get in touch with the dr. to get a new script

Based on what I gathered from "the book" unfortunately it is not at all surprising that this dr. would be asking for titers tests and basing things on that.

Unfortunately I think that the publicity that dr. got due to the "publication" does not correlate with her actual pandas experience.. at least from what I have read here. That is so unfortunate... I would honestly demand to speak to the dr. herself.. if only to tell her that you made an appt to see HER. Then I would move on to a more experienced doctor. My heart goes out to you for going through all that.... It's not about if the actual diagnosis for your daughter is pandas or not... it's about that should never happened the way it did. The np told me to get aso titer and dnase b bloodwork. Where do you get CaM kinase ll testing done. This particular place said they did not know of a lab to have it done.

I only know what my dr. told me.... my first is what you said... was a section, but I had been in labor first, it was not a scheduled section... My subsequent pregnancies ended up sections as well.. I was told that since I had been positive with my first for strep b that regardless of my having sections and regardless of the fact that I tested negative for strep b with my second pregnancy that they still had to treat me with the antibiotics.... Maybe my obgyn group had a problem once where they didnt' treat and maybe they just are overly cautious... I don't know. [/quot OBGYN's go by the guidelines from ACOG (American College of Obstetricians and Gynecologists). They have a website...check it out. Scheduled c-sections do not require antibiotic for GBS, but if you are in labor and then get a c-section that is a different story. However, some physicians and midwives may order antibiotics anyway; that happens. The protocol for GBS prophylaxis is actually a little more complex than just a dose...where I work you need 2 doses 4 hours apart and needs to be completed before delivery...so many hospitals treat baby if all antibiotics are not in.

I was specifically told the antibiotics were because I was strep b positive and that even though it was a section they had to regardless. The other reason I had antibiotics was because of a mitro valve prolapse... they told me that the antibiotic for the strep b was not the same as the one I needed for the mitro valve.

I think I remember seeing that kind of survey done here as well. I saw Beth's survey yesterday as well. I too was strep b positive but my son was delivered via c-section. I was on a lot of intravenous antibiotics at the time of the delivery due to the strep b and a mitro valve prolapse.. so I had 2 different kinds of antibiotics. In fact, my son had thrush from the very start which I guess maybe was due to that.. It's all interesting no doubt... How do you know he's getting strep if his cultures are negative? High titers?

Ah thanks Faith, this is a good reminder to me to remember to tell the doctor to remove my dd's attitude at the same time as the tonsils and adenoids... would hate to forget Glad to hear it is done and over with! What a relief I am sure... keep us posted on any changes you see once he is healed.

Wonder how many people won't even click because they will think it's research for the bear.... good grief I think it would be a great idea to let Dr. Cunningham know... maybe she will have a helpful way to phrase things.

How great would that be!

I too was trying to decide if he is in boarding school or if by board you mean a sport.

I was fortunate that my pediatrician agreed to do it... I think the only people who had labs do it were people who kinda had a good relationship with the lab tech already.

Actually I just got an email that it is being postponed due to the pending snow. This is what it said: Dear Friends, Due to the pending snow storm in New Jersey we unfortunately must postpone the webinar scheduled for 7:30pm on 02/10/10 to a date yet to be determined. When we have rescheduled this webinar we will email you an invitation with the date and time.

Don't titers take time to rise? So if taken right after an infection they could be low but then rise a few weeks later?

When you say the ENT said if he is a carrier there is nothing that can be done... you mean the ENT doesn't think the tonsils out will help? It's possible my son is a carrier but it never occurred to me that it would be pointless to get his tonsils out and we have been considering it at the suggestion of the doctor we see for pandas as well as my pediatrician now. It sounds like your son gets strep symptoms right? I thought carriers didn't get the sore throat symptoms... my ds has never had a sore throat but tests positive sometimes... with just minor tics and then emotional liability. Since your son frequently has strep and then that history on top it seems like a no brainer to me but of course I'm not a doctor so what do I know. It breaks my heart that your son had to go through all that and it might be purely a strep issue

Would you say your child started out with milder things that you knew were not right but just weren't this extreme? I think what I am asking is that if my son presents what I guess would be mild compared to all this, some mild tics, irrational, tantrums/crying spells that are extreme to me but not at all like what is described here, does change his voice at times... overreacts to things, gets a general grumpy mood.... should I be concerned that one day I will see what is posted here? I think that is what haunts me at night the most...

I might be wrong but I don't think titers change quick enough for a week to matter...