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Strep titers vent


ajcire

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I want to scream. I orignally saw a ped for this who believes in it and treats it and did run the titers test but did felt it was pandas despite my son's levels being in the normal range.... Great. That dr. is no longer accepting insurance and there is no way I can see him. So I thought it was perfect that I discovered during our last bout of strep that there is 1 of the 5 peds in my regular ped office who does treat this. BUT I just hung up with him out of concern that the amox is not working on my ds... we did 10 days on it for a positive strep culture and now are almost done with another month of it. His response to me was that it might not be pandas then because amox would take care of the strep. BANGING MY HEAD!! I almost wish I didn't know everything I know now from all of you smart parents because then I would not be feeling so distraught right now... I would simply thing oh, ok... it must not be Pandas... BUT I KNOW it is.

 

So he told me to come in and have the titers run again next Tuesday. He says if the titers are not high it is not Pandas... yep... I just kept saying to him "but the other dr. said the test was not as reliable as my observations" ... He said he would try another antibiotic but I know if this test comes out fine he is going to be hesitant to do so because he really thinks the amox should cover this all.

 

Just one look in my ds's eyes and you can see he is not ok :mellow: I keep taking his temperature because he just doesn't look well.

 

I guess my question is that the last time he had the titers test done it was several months after the time we were struggling most with this and he didn't have positive strep cultures, just my daughter did... This time the known strep was mid September and he's been on antibiotics basically since then. Any chance that even with being on the antibiotics and it being a bit of time from when he had it that the titers might still be high? I don't really understand any of this... I just don't want a negative titers test to throw this all off.. .the only reason the dr. took my word when I told him I needed him treated for Pandas was because I said it, brought my son in with no typical strep signs and had him cultured and it came back positive. He said that is why he didn't send me for the test before treating him at that time.

 

I know I should do the cunninghams test... I just can't doo it at the moment... If I am going to pay that money for it I really need to get my husband to be on board with this stuff and he's not quite there yet. Of course maybe the cunningham test is what I need to get him on board.. kind of a catch 22 I suppose.

 

I guess this was more of a vent than a question.

 

I feel like I got so hopeful with finding a dr. in my regular office and now I am realizing that this likely is not going to be my answer.

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Are you secretly me???? Normal results yet convinced its pandas, Dr. problems, insurance problems, husband problems. Son had normal strep, daughter tested positive. The whole amox would have killed the strep crap, so it cant be pandas. Banging head. I think we are living the same life...and oh we have NO dr. either

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Gosh, I know someone else's misery shouldn't make me smile but thank you for that. At least you got me to smile. I'm just sorry you are going through that as well.

 

 

Are you secretly me???? Normal results yet convinced its pandas, Dr. problems, insurance problems, husband problems. Son had normal strep, daughter tested positive. The whole amox would have killed the strep crap, so it cant be pandas. Banging head. I think we are living the same life...and oh we have NO dr. either
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I want to scream. I orignally saw a ped for this who believes in it and treats it and did run the titers test but did felt it was pandas despite my son's levels being in the normal range.... Great. That dr. is no longer accepting insurance and there is no way I can see him. So I thought it was perfect that I discovered during our last bout of strep that there is 1 of the 5 peds in my regular ped office who does treat this. BUT I just hung up with him out of concern that the amox is not working on my ds... we did 10 days on it for a positive strep culture and now are almost done with another month of it. His response to me was that it might not be pandas then because amox would take care of the strep. BANGING MY HEAD!! I almost wish I didn't know everything I know now from all of you smart parents because then I would not be feeling so distraught right now... I would simply thing oh, ok... it must not be Pandas... BUT I KNOW it is.

 

So he told me to come in and have the titers run again next Tuesday. He says if the titers are not high it is not Pandas... yep... I just kept saying to him "but the other dr. said the test was not as reliable as my observations" ... He said he would try another antibiotic but I know if this test comes out fine he is going to be hesitant to do so because he really thinks the amox should cover this all.

 

Just one look in my ds's eyes and you can see he is not ok :( I keep taking his temperature because he just doesn't look well.

 

I guess my question is that the last time he had the titers test done it was several months after the time we were struggling most with this and he didn't have positive strep cultures, just my daughter did... This time the known strep was mid September and he's been on antibiotics basically since then. Any chance that even with being on the antibiotics and it being a bit of time from when he had it that the titers might still be high? I don't really understand any of this... I just don't want a negative titers test to throw this all off.. .the only reason the dr. took my word when I told him I needed him treated for Pandas was because I said it, brought my son in with no typical strep signs and had him cultured and it came back positive. He said that is why he didn't send me for the test before treating him at that time.

 

I know I should do the cunninghams test... I just can't doo it at the moment... If I am going to pay that money for it I really need to get my husband to be on board with this stuff and he's not quite there yet. Of course maybe the cunningham test is what I need to get him on board.. kind of a catch 22 I suppose.

 

I guess this was more of a vent than a question.

 

I feel like I got so hopeful with finding a dr. in my regular office and now I am realizing that this likely is not going to be my answer.

 

 

I am so sorry you are going thru this. I remember the beginning when I could not get anyone including my husband to believe me. We saw every specialist and they each told us something different....transiant tics, tourretts, even an ocular migrane (that had lasted 5 weeks at that time???) Then several weeks later my sons twin brother started having horrible tantrums and pulling at his eyes. I called the nurologist that we had just seen weeks before who had told me it was imagination (mine and my sons) and she acctually told me that the only thing she could think of that could cause such sudden extreme behavioral changes in two 5 year olds was that they must be being molested!!! (and she was the first woman ever to graduate from Harvard Medical School)

 

A friend suggested I get them tested for strep. Their ASO's were both high. But all the other titers were normal range. We were lucky in that our ped was open enough to read things I gave him and to try the antibiotics. Started with Amoxicillian (I am sure I must be spelling that wrong) and it worked some. Then we switched to Augmentin and there were much better results. If you look on Diane's site www.pandasnetwork.org you can look thru the case studies and see that some kids did not have elevated titers.

 

Sadly, my son finally had a raging tantrum in the bath tub where my husband had to climb in a pull him out kicking and screaming and punching and biting before he was willing to believe me and not the "specialists" . Since then he has been on board with me 100%.

 

Stick with what you know in your gut. No one knows what is going on better than you. I recently interviewed a psychologist for both my boys. I was there no more than 5 minutes when he informed me that there was no such thing as PANDAS. Much to his surprise I stood up and told him I was not going to let him waste one more minute of my time, and I left. I also interviewed another pediatrician (closer to our house) for regular every day sort of things and he informed me that he would have no interest in having us as patients if we were working with any other doctors.....oh and p.s. he believed in PANDAS, but said he would not perscribe antibiotics for my kids and would not entertain the idea of IVIG because not enough "experts" have come out to say it makes any difference.

 

Hang in there.....I am sure most people on here can relate to how frustrated you feel. Vent all you want. We are listening.

 

Warmest wishes,

Kari

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Here's a link http://www.latitudes.org/forums/index.php?...gham+blood+test

 

The lab is closed mid-Nov until mid-Jan...so it might be too late to get a sample in b-4 the holidays...but it certainly doesn't hurt to send an e-mail and ask.

 

BTW...the donation is both optional (recommended if you can afford it!) and tax deductable. I think a big part of it is to cover shipping expenses of your child's serum.

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Am I the only one with peds that say don't bother with a titer test? Even when I requested one. But then everything (well almost everything) correlated with a + strep test.

 

 

Vickie, When I saw this dr. last month I had brought my ds in and he asked why.. I told him ds has pandas and that I strongly suspected he had strep. He did the throat culture and the rapid came back neg so he said if the culture came back neg he would send him for the titer test (when he said it then I kinda just rolled my eyes to myself because I know my ds's showed normal when the last dr. ran it) but the next day I got a call that the culture was positive and he said the positive culture saved me the bloodtest. So his only reason now is because he thinks it can't be pandas if the amox isn't clearing it... grrr....

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Sorry you are going through that. I have had my DD on Amox for three weeks now and she gort better the first 2 weeks. Well, on Sunday morning she woke up ticcing like crazy. They were back 10 fold. I called my Dr who is just learning about this through me and he was actually willing to change her to Augmenten but only at 400 mgs. I am hoping this will make a big difference or he might not be willing to keep working with us.

 

I wish Dr's could be there 24/7 to see the ups and downs of our kids and then they might get it when we say it helps for awhile and then it doesn't. Lets try something else.

 

Melanie

 

PS I just got my kit today from Cunningham so they are still sending them out.

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this one http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Sorry Erica...geesh...blockhead doctors.

 

Even the ped in the hospital (who didn't really know much about PANDAS) when my dd was first diagnosed (positive culture) put her on Augmentin (rather than amoxcillin) right away, "because it is more clinically effective against strep." Augmentin helped (not as good as Azith., but we weren't doing super high doses), but our dd regressed after we switched her to Amoxcillin (for long term prophylaxis 250mg 2x daily). Things finally turned around again when we discovered Azith.

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