ajcire

They send you vials, what you need to ship it back in, and instructions for the person drawing the blood. There will not be a prescription for it. I had been really nervous to ask my ped to do it but much to my surprise he was extremely open to doing it. You can email Madeline Cunningham regarding participating in the study. Ok, just saw your other post where you have been in contact with Dr. Cunningham already regarding this.

Thanks everyone... I feel like a weight has been lifted because this is done and has been shipped off. First of all the ped who did it for me was awesome. He did question why the other dr in their office even wanted the blood titers test which was what I was originally going for when I asked if he would do this too... He said the titers should be high because he had strep in september. He said really lots of people would have high titers... I told him I was afraid if the titers were low I was shooting myself in the foot doing the test but the other dr. wanted it... he said he will do it and only put it in the chart if I want it in the chart. I asked him if the titers come back low if that would at least confirm to the other dr. that titers mean nothing since technically my son's should be high... although he has been on antibiotics for the month so not sure if that would lower them (amox for 10 days for the strep and then an additional month) But that said... he did the blood draw, my son was wonderful (of course he is also showing no signs of anything now..grrr well, I mean it's great but grrrr) and he was able to spin it or whatever it is called there.... Fed Ex... didn't ask anything at all. I was prepared though to tell him it was serum and it was packaged according to their safety guidelines. Thanks for walking me through it. I feel like I am so easily stressed by things like this.

I have nothing at all to add as I don't know anything about any of that stuff.... but big hugs!! It is all so frustrating!

I am going to go read that... I was kinda thinking that a legit study probably wouldn't be asking us to ship things illegally although I confess I still don't want to have to get into what's in the box with them.

Do you think I could just say medical information? I suspect they ask because of the nature of the overnighting of the package? or do they ask every time you ship like how the post office asks if there is anything hazardous. If they say is there anything hazardous I am guessing I should just say no... I am a horrible liar.. although I don't believe my son's blood samples to be hazardous I do know that other people might not agree.

Ack, what should I say is in the box if they ask me?? I don't think my office is going to spin it or whatever it is... although I have no idea.. just guessing they don't do that in the office? I'm not going to the lab. One of the peds said he would do it for me.

Thank you! It seems a bit less daunting a task now. I am doing it at 11:00 tomorrow and then keeping the supplies in the car and getting it set and heading right over to fed x... not taking any chances on hitting the weekend quote name='pixiesmommy' date='Nov 3 2009, 05:22 PM' post='43820'] Red is if the lab can't spin it for the serum. Blue is if they CAN spin it. They will only use 2. When you send it back, include the ice pack and the vials, along with a history of strep (or you can email this- I did.) Put the ice pack with the vials and wrap in something like an old towel or paper towel and seal in a ziplock baggie (in case it bursts in transit so it won't soak into the box, etc.) If it seems to shake around, then tuck some paper towels or bubble wrap or newspaper- whatever- in the space. We re-used the box with the new label and it was fine. Also make sure you don't overnight it on a Friday because they are out of the office and can't receive it on Saturday and it would spoil. -Manda

Hi! I got the kit today and am a little overwhelmed. THere are 4 different vials? 2 red, 2 blue? Will they be using all of them? One of the air filled cushions is out of air... I might have one from a different package someplace but not sure... any ideas on if I need to put something else in to cushion it so it can't shake around? And can I just reuse the box it came in but swap out the form?

It's so hard for me to pinpoint exactly because his symptoms present in a mild not so obvious way. The most concrete symptom is a throat clearing thing he does... I have noticed just the past few days that it has really decreased to where I only notice it once or twice throughout the day.. if I didn't know better just hearing those few times I would just think he was clearing his throat the way anyone might do... unfortunately, or fortunately... I know better. The kit came together.. I am scheduled to go tomorrow.

Kathy, I have thought about that a lot... what would this info do for me? What the test hopefully will do for me is to get my husband on board that this is real. My son is mild so it's easy to write all this stuff off as other things.. although I don't get how he is explaining to himself the positive strep tests when he has no strep symptoms other than throat clearing and behavior but if this helps my husband in any way to get that this is real than I think it will have been worth it... if it helps my ped who thinks titers are the criteria for this than that will be good too. "one good piece of advice i've gotten - when we saw our first naturopath, i was surprised she wasn't running more tests. she said early in her career, she ran all kinds of tests - the data is certainly interesting and it would be great to have all kinds of info on everyone. however now, she only runs tests that are going to impact how she is going to treat the person. good luck, Kathy"

I am expecting to receive the test today... unfortunately I was already scheduled for bloodwork for ds today and was hoping to get it in the mail yesterday even though the tracking did point to today. So I will cancel the bloodwork and try to get in tomorrow instead.. BUT for some reason, probably murphy's law... my ds seems fine the last few days... not really noticing the throat clearing much and while he did have a couple of yelling moments and crying moments those really didn't yell PANDAS at me... but rather were more typical of what other kids might have done too. My daughter is on antibiotics for current strep that we found out about this weekend... SO I should be thrilled that so far ds is fine (he was on amox until last week.. lovely timing of taking him off with my daughter getting the strep...grrr) BUT at the same time I don't know what to do... I likely won't be able to do the test again... but really wanted to get it in before they stop doing it for a bit. His symptoms are pretty mild to begin with so it's possible some is still there that I am not even really seeing but maybe it's just not there right now aside from an occassional throat clearing. Seriously, they really need to make a pee on stick test for this!! What do you think you would do?

LOL Peg, I had tried to come to your party earlier but I too was just not able to read through it. Your translation definitely helped!

Isn't it the worst feeling when there is definite strep in the house You poor thing... didn't you just have everyone cultured?

Oh I am crossing my fingers for you!!! I definitely am much more respect for the doctor who says I don't know and need to learn more than the one who is close minded.

Faith, I completely agree with you! It would be interesting to see the results of my dd but my luck her number will come back high and put me into a panic. Actually though the real reason I won't be able to do that right now is because my husband is still having enough trouble with the idea of me sending in dh's blood. I think if I tell him I want to test her too that it might just put him over. I know that doesn't sound like a great reason but me getting to do this with my son right now is a big deal. It is definite food for thought though... Vickie, the ped felt they would not suggest removing my dd's tonsils.. he felt that it was not likely the problem but an ENT would have a better idea of course.... it was her adenoids that the speech therapist suggested were enlarged... just said she had a nasally sound to her.. which is true. She does usually sound like she has a cold even when she is totally healthy. She was not suggesting they were the cause of articulation issues though and said likely she would grow into them... which was why I had not had it checked before... the speech therapist didn't think it was a huge deal.. just a possibility.

Faith, I mean that my daughter who keeps getting strep with the sore throat and fever is not my pandas child. It's my son who I have pandas concerns about... usually when my daughter gets strep, my son also will get a positive culture.. usually his throat clearing increases and his irrationalness and quick angry response kicks in. Today he still seems ok to me... I almost feel like murphy's law has him seeming fine when I have an appt for bloodwork tomorrow for the titers and also if I get the cunningham kit in time... if I don't get the kit today I will cancel the appt tomorrow because obviously I want to do both blood draws at the same time so I don't have to stick poor ds twice. Vickie, yes, I wasn't always so good with the toothbrush thing but when my daughter had strep in september I went out and stocked up on toothbrushes because it was being talked about on the board here which was a good reminder for me to get on that fast. They each have their own cup to keep their toothbrush standing up in so they can't touch each other and I use the disposable paper cups for them for rinsing. I need to buy extra toothpastes now too though. I am wondering if I should look into a toothbrush sterilizer for other times... and still replace them when I know they have strep... I hate to waste money on a sterilizer if they don't really help. I need to research that out. My ped said her tonsils don't look little and he doubts they are the problem but suggested it could be something to do with her adenoids. I had a speech therapist ask me if she had enlarged adenoids because of her nasal sound when she speaks so I guess it won't hurt for me to go anyway. I hate to put her through stuff that she doesn't need though but I hate for her to keep getting strep. Inbetween sept and now she did have a negative culture so I know it's not just that we didn't get it the first time.

Peg, Good luck to you!!! It sounds like you have a great ped who really does want to help. I am kinda nervous that the cunningham test will be normal and totally make me doubt what I am so sure.

Vickie, I took my strep positive dd in yesterday because she had 101 fever and said her throat hurt. She gets strep a lot but she always seems to get the classic strep symptoms.... she does not have pandas symptoms. For some reason her rapids always come back negative though so when the dr. noticed that in her chart and saw her throat was red he told me to start her on the antibiotic and if I hadn't heard from the office by Monday to stop it but this way we would have a head start if it was strep. Then today my 2 1/2 year old ds woke up with 102. When the office called to tell me my dd was positive, I told them my little one was sick with fever and they said to bring him in for a culture. So far his is negative. My pandas son had a day trip with my dh so he was not home for this or I would have had him cultured today too. My pandas ds has NEVER had classic strep symptoms. I have brought him in based on behavior or throat clearing when my dd had strep and he has been positive 4 times now.... 3 times I just wanted him checked and one time had pink eye and they checked him and it was strep too.. they said often pink eye and strep go hand in hand. I would think I was crazy too sometimes except that to me the fact that when I guess he has strep based on behavior/throat clearing and take him in and it's positive that should tell them something.

Thanks EAMOM... I think I will bring that with me! I am having an such a hard time with this because my ds is so mild.. it's like part of me wants to just ignore all this. BUT then I see here so many cases of where mild went to a crisis situation and well, obviously I don't want to ignore this and obviously I want my son to be well and I just don't think he is even when he's not in an episode... he just doesn't seem well.. I feel like I can see it in him... and obviously at one point things got bad enough that I was able to put the pieces together but really sometimes I do wonder if I am being crazy trying to get to the bottom of something that most people aren't seeing.

Would it help, do you think, to bring in a copy of the diagnostic criteria for PANDAS? I mean, what you really need, (and apparently what they are not clear on) is an association of symptom exacerbations with + strep. The ONLY reason for running those titers is to confirm that there was a missed strep infection (so to establish that association). Maybe the doctor who feels he doesn't know enough to treat can be educated? I'm exasperated for you! Yeah.. I think that the close re-exposure with now my son possibly now having it is going to mess with things... the dr. who wants the bloodwork first saw my son in sept when once again my non pandas daughter had strep... my ds was showing some signs prior to my knowing dd had strep but when I knew she had it I brought him right in and sure enough it was positive... before knowing it was positive the dr. said IF it wasn't positive he would run the bloodwork.. so at least he knew the positive culture was enough.... but somehow I think he is going to try to explain away some stuff as coincidence now if the titers aren't high... unless my son has a positive culture.. that was not something I was expecting since just got off the amox and at the time I scheduled the bloodwork nobody had it in my house. I am going to try to talk to the dr. I saw today about what you suggested... that maybe he would like to give this a try... he actually asked ME if I had any names of doctors to refer a few of his other patients to.... I told him I would give him a list but that I don't know any of them personally... I got the list from Beth M and will pass it to him.. because the one dr. he has been referring people to no longer takes insurance... BUT the confusing thing to me is that there is a dr. in the practice willing to prescribe antibiotics for it but clearly that is not who this dr. is referring anyone towards... I think this dr who is trying to treat it means well, wants to and believes but just doesn't know enough about it... happened to have had a few kids respond to amox and that is what he is now going by. Today's doctor also suggested that I take my non pandas dd to a pediatric ent to try to get to the route of why she gets so much strep throat (with classic signs..fever and sore throat)... I wish I knew who is passing it to whom.. if my pandas ds has it now I won't know once again if he is getting it first and me not knowing he has it and then passing it or if she is getting it first... not that it really matters I guess. Not sure how much of this post made sense... it's all starting to not make sense to me. I am almost starting to feel like everything is all in my head. I should add that for a variety of reasons I just can't get to one of the other doctors on the list right now... I know that would certainly be an obvious solution.

Are you talking about ASO/Dnase titers? A positive strep test should negate the need for the titers, unless they want to check for a PREVIOUS strep infection, as those titers do not indicate current infection. At any rate, neg. ASO/Dnase do not rule out previous strep infection, but positives confirm them. Did that answer your question? Yes those are what I am talking about.... the thing was that the dr. was going to do the titers prior to the strep in my house because *banging my head* he said that if the amox didn't take care of stuff maybe it wasn't pandas... .so he said he would run the bloodwork because what's the point of the antibiotics if he doesn't have high titers... *banging my head more* He was not the dr. I saw yesterday and today with my others so I couldn't ask him... but I am supposed to go tuesday for that bloodwork. Maybe he will just want to run the culture now but of course the fact that we might be dealing with active strep is messing things up for my trying to figure stuff out..... Ironically after telling the dr. that I didn't think the amox was doing it, I am not sure I was right... he's still clearing his throat a little but it is better than it was... unfortunatley we just finished a month and a half on the amox and it has now been stopped as of a few days ago.. so of course I guess that means my ds can still get strep now. Something good came out of all this though! The dr. I saw today told me he would be happy to do the blood draw for the cunningham test. I am just waiting for the kit. Unfortunately this dr. doesn't seem comfortable treating pandas but not for lack of believing... just said he doesn't know enough about it and treatment... one of the other dr's seems comfortable with prescribing antibiotics but seems to be going by the low titers = no pandas thing and is a big fan of amox and said that amox would kill strep and if it's not helping it must not be Pandas too. But if we know we know he has strep and also know he had it in Sept. wouldn't low titers indicate it's clearly not proving anything for him? We had this bloodwork done last year and it was within normal range... that dr. I saw said he felt ds still had PANDAS.. that it would have helped him with confirmation but that low titers didn't rule anything out... unfortunately that dr. no longer takes insurance.

I don't know if my ds will test positive for strep right now BUT it's in my house.. I got the call today about my non pandas dd that the culture taken yesterday was positive today and they told me to come in with my youngest non pandas ds because he woke up with 102 fever today... so far his is neg. but who knows what it will show in the culture... my pandas ds is scheduled for bloodwork Tuesday.... I will ask them to culture him as well for obvious reasons... if the strep bloodwork they are showing comes back low and he the culture is positive would that be enough to convince my ped that the bloodwork doesn't matter? Or is that too simple because then there would be no questions on the titers?

I wonder why certain tics are so common and others not? My ds doesn't have many but the throat clearing is the main one he gets now.... the only other one he had was the eye blinking which I see is also very common.

That is great that they do that. I don't know if it would just make me more crazy though. The only notices I have gotten like that were once that there were last year.. 1 for lice in the grade and 1 for chicken pox in ds's class.

For those of you whose schools send home notes about strep.... did you specifically ask or do they send it to everyone?