ajcire

Vickie, no doubt that is an insurance recommendation... for a minute I totally forgot about the insurance aspect... Yes, I think you are right about the gardisil but not sure which states. I sure hope it is not in my state. I am pretty mainstream on the vaccinations (despite hating them, I do what I have to do with the mandatory ones, avoid the flu ones except for my asthmatic little one...) but that one most definitely scares me.

This is just suggested right now right? Not the mandatory vaccines right? The thought of mandated hpv vaccines for my ds and my dd really scares me. I can't believe they think that the trouble of having to go back for shots to separate them is worse than the idea of mixing them all together. Goodness!

What did Dr. T suggest? 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

I know that my ds had strep in Sept. and my dd had strep in sept and oct. as we had positive cultures at those times. So there is no question as to that they had strep. I don't think there was new strep in november. My son's throat clearing actually finally just went away within the last 2 weeks.... and he is doing well at controlling his sometimes short temper. I have no doubt that he has pandas. I also have cunningham results for him of 141. My dd on the other hand, she is a mess but not diagnosed pandas (haven't done the cunningham on her either) .. trying to figure that out... she has no ocd (that I am aware of, no tics) but has that irrational long lasting emotional tantrums lately and has had unexplained daily tummyaches for at least a year now. When I say my ds has not been on anything he was on amox in sept and for a month and a half after that positive strep culture (no sore throat symptoms but his behavior and tics and my dd's positive culture was why I checked him.. he never gets sore throats when he has positive cultures) I started him today on zithromax... for 10 days daily and then it will be through the winter 2 times a week just to try to eradicate any leftover strep and prevent new I guess. I am just trying to figure out what the test would possibly tell us and if it's terrible for me to start the antibiotics before getting the test done (I won't be able to do the bloodwork till next week at the earliest but am starting this week on the antibioics for my ds) and really if it's so close to when my dd had it done what the point is. I am trying to not bug the dr with the thousand of silly questions I thought of after leaving the appt. The appt was for my son.. but we discussed my daughter too.

My ds had his done in Nov. Aso was 480. He has not been on anything, he is in an ok place right now but the dr. wants me to get this done again. I have concerns about my dd who is not diagnosed pandas and he said to get hers done too but her last one was done 3 weeks ago (was 120) ... This dr. definitely knows titers are not a sole indicator of anything.. I'm guessing it's just to have another possible puzzle piece. Would tests so close together though actually show anything?

I do think its true that 2 weeks on amox won't lower titers to indicate no more strep but maybe I am wrong on that. Unfortunately your ped sounds like the ped I was working with who told me that if amox didn't take care of it maybe it wasn't pandas.... I just got back from seeing another dr. who told me that amox is one of the least likely to work for this. I am sure people here will have much better advice but I wanted you to know that you are not alone in pediatrician frustrations and it's even more frustrating when you find one who is willing to try but has the wrong information.

I might have asked this once before but don't remember and I know I have just been giving my son a chewable acidophilius (ack, no idea how to spell this) when he is on antibiotics but if I wanted to pick something up at the store what one probiotic would recommend? Especially if you just get yours at a regular drug store (cvs, walgreens or the like). If you really are set on a certain one that you have to get at a health food store or online, feel free to share that too... I would go that route if I need to but was looking to pick something up local and conveniently. or do you think the chewable acidipholous is fine? He won't swallow anything so it kinda has to be something I can get him to take either by chewing or mixing in something. I don't have to hide it, he will take it.. just won't swallow it.

But Susan, then the next question would be why is the ocd popping back up if she is on so much antibiotics no? 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 am guessing that putting a thin pad doesn't help take away the sensation any? Do they test for strep with a rapid and culture there the same way they do for throat strep? I presume that the hope is that she wouldn't be getting the vaginal strep while on the antibiotics. Dcmom, are you suggesting it is not really related to it being vaginal strep but rather just a sign that it is likely caused by strep and that in Susan's dd it happens to be vaginal? Meaning that could be a symptom people see even with strep elsewhere? 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

Best wishes!!! Hey, if you make the news make sure that while they are escorting you out that you at least shout out PANDAS.... might as well get it out there any way we can All jokes aside I hope this is the answer for you and your dd that you have been searching for.

If your child has the constant tummyache... and it was related to strep did it go away from antibiotics?

Hmm... this is tough as far as symptoms because my son has shown mild ocd in the past, has some mild tics but I can tell when there is strep more on behavior if that makes sense.

Thanks! I am going to guess that it is right then! I wish my son would take the pill as that would be so much easier for the long term with the liquid only lasting the 14 days..

Is it weird for the dosing on zithromax to be 2 teaspoons in the morning? I don't feel like bothering the dr. to question if this sounds normal.. I have always done morning and evening but this one says 2 in the morning?

Ok, this is not funny but if I can make you smile for but a second... When we passed a cemetary with my son when he was 4 (don't think it had anything to do with pandas.. just a question he had) he looked at my dh and said, "How do you get in there?" Of course I was in complete panic because I thought for sure he was asking how you get buried in the cemetary and I didn't want to talk about that with him..... My dh stopped and thought a minute and said, "There is an entrance over there" I held my breath but my ds seemed satisfied with the answer and didn't mention it again. Phew... When my dh's grandmother died my ds was 5 at the time and asked my dh how old she was... he told her 88. He quickly did the math and told my mother, "You have xx many more years before you die too" Gasp.

For me it was something concrete to show my husband. My ped is not a non believer, he just says he doesn't treat it, doesn't feel it is within his realm to treat it, feels he is not qualified being he doesn't know enough about it but he was still very much interested in the results and was very open to do blood draw for me to submit to Dr. Cunningham. It was not $400.00 at the time though and I can totally see the dilemna you have as to whether it is justifiable or not.

I don't have any good advice but wanted to wish you a successful surgery and speedy recovery! I know that you have been waiting for this for a long time!

Big hugs... totally on a side note... nothing to do with pandas but I had never heard of pompe but just saw a coming attraction for a movie regarding this... Extraordinary Measures. When I watched the trailer for the movie my very first thought was that the parents portrayed in that movie had the strength and determination of so many of the parents of children with pandas.

never had a sinus infection that I am aware of, never had an ear infection either. but now that I think of it... he had one incident of just a really really icky nose to where it was just gross... the dr. felt it was infected, gave nose drops and antibiotics for it... never said sinus infection. I don't know what it was about... I kinda thought it was just a mess because my son for some reason just couldn't figure out how to blow his nose and I thought maybe it was from him just constantly trying to sniffle it back instead of blowing (gross I know). I am trying to remember when this was.... I THINK it was before his 2 minor ocd episodes but it was definitely after in hindsight he already had the eye blink tic and little quirky things.

This is probably a dumb question and I have been around long enough now that I should know but what is IGG testing? Is that something I should have done?

Oh my goodness. That makes me really angry. I can see how doctors could dismiss me about pandas for my son (although it still seems clear as day to me) but I can't for the life of me see how they could just dismiss you about it. Even if they don't believe these children have pandas they should at least be trying to figure out what's wrong and not writing off those things as perfectly healthy. I wish you a quick road to getting your son well.

Susan, yeah it doesn't affect him and when I say all the time it kinda comes in phases... trying to remember if I see a weather related pattern or not... The nosebleeds have started again after not for a while.. maybe it's because we have the heat on now. We put on a humidifier to try to help with the dry air. It's not daily but it could be a few times a week for a while and then not for a while. It's not really a big deal for him except that at one point of course I thought oh my goodness he must have some condition causing it. I have talked to a lot of people (not pandas people) who have told me their kids get them often too. The ped said he thought one of ds's capillaries looked fragile and close to the surface or something and might be the cause of the frequent nose bleeds although not sure as I think he gets it on either side.. My mom said I used to get them fairly often too but still makes me nervous. Thanks you two..... She has never gotten nose bleads like your ds ajeire, I am sorry about your son! But glad it does not seem like RF. SFMom, I keep going back and back to RF with her but her docs say she does not have it. Dr. T. felt she did not have it.... But I will bring it up again. Thanks! Susan

I put internet because that is where I found it when connecting it to my son. TOTALLY coincidentally when I was talking to my ped about something totally unrelated his response was "It's like Pandas... you can ask 100 great doctors and you can still get 100 different answers" Now I had no idea what he was talking about and didn't ask. Then a few months later when I started researching what was going on with my son up popped pandas. So the dr. mentioned it but not in regard to anything to do with my son or what I was in the office for... just in conversation. When I went to the doctors regarding things related to pandas not one of them suggested it might be that. It took my internet search to figure it out.

SF Mom, that makes me nervous now. How do you know if they had RF that was never diagnosed? Ds has gotten nosebleeds since he was at 2 or 3. He's now 7. Ok, I just looked up RF and I feel a little better because he never had those other symptoms.. no joint issues or anything like that.

I totally know how you feel. My ds is what I consider very mild as well and it's so easy to write off the signs of pandas as something else. It is easy for my dh to write off the very mild tics that come and go as normal childhood tics because he was there when the ped told us it was a common childhood tic not to worry. He was also there when the same ped told me I was crazy when I mentioned pandas several years after the innocent eye blinking. We went through a lot last year when this first came together for me, when I started putting the pieces of the puzzle together. Honestly though, when I try to explain the pandas part of him to friends or family (with exception to my parents who get it and spend a lot of time with him) they look at me like I am crazy because they don't see anything wrong with him. Basically I took over bedtime last year when that was the biggest issue for us because we couldn't agree on how to deal with it... I felt it was pandas and medical, dh felt it was behavioral. I cried a lot but then told him that he didn't have to go with me but that I was looking into this and I did. It broke my heart to go an appt about it without him but at least I was doing what I could. Dh still doesn't quite get it although now I think he just doesn't want to admit I am right but after getting the cunningham results he was supportive of me making an appt with Dr. T which is coming up soon. Unfortunately he will be away for it but I do think he would have come with me for this one. It is really hard when it's subtle pandas symptoms. I mean obviously if he presented with severe ocd or tics it would not be something he could ignore and not see. I have had people tell me the same thing... that those symptoms of pandas are so broad... but I keep telling them that if the only symptom ds had was an eye blink or the only symptom was frequent urination, or the only symptom he had was going through a short hoarding garbage phase, or if the only symptom was being terrified to sleep than I would agree it might not be pandas but when you put it all together.... oh yeah and did I forget to mention the positive strep tests. It seems so clear to me that it is impossible to see what others don't get.