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why even do blood tests...and is zith just an anti-inflam


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So here i am with orders for a bunch of bloodwork for my daughter. And wondering, does it really matter what the tests show? I mean, if the myco p and strep and everything is negative, the docs will still say that there's something there ... so then come the antibiotics. And with zithromax having such anti-inflammatory properties, maybe that is what is helping these kids, and it's NOT because it's eliminating some "hidden" chronic infection????? Cuz from what i am reading, it seems like soon after coming off the abx, kids get worse again. Bottom line---if the doc thinks it's pandas....isn't the treatment all the same "crapshoot"---pardon my wording here? I'm just so overwhelmed and confused. I really don't want to force my daughter into a pandas dx if it's really just Tourette's/ocd/anxiety. Ugh......

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So here i am with orders for a bunch of bloodwork for my daughter. And wondering, does it really matter what the tests show? I mean, if the myco p and strep and everything is negative, the docs will still say that there's something there ... so then come the antibiotics. And with zithromax having such anti-inflammatory properties, maybe that is what is helping these kids, and it's NOT because it's eliminating some "hidden" chronic infection????? Cuz from what i am reading, it seems like soon after coming off the abx, kids get worse again. Bottom line---if the doc thinks it's pandas....isn't the treatment all the same "crapshoot"---pardon my wording here? I'm just so overwhelmed and confused. I really don't want to force my daughter into a pandas dx if it's really just Tourette's/ocd/anxiety. Ugh......

 

I'm sorry you are having such a hard time. It is important to try to determine which infection is causing your child's symptoms because then the doctor can tailor the antibiotics to better treat it. Mycoplasma responds better to biaxin and zithromax. Strep responds better to augmentin or a cephalosporin, and most of the time zithromax. Lyme respond to a series of rotating antibiotics, and other supplements.

 

Also, no, if the infection is truly cleared, and the immune system has quieted down, then a child will not get worse once the antibiotics are stopped. Although, my daughter will be taking antibiotics until adulthood, when we have dropped her down to a preventative dose (not full strength) her PANDAS symptoms don't come back, unless there is something going on with her immune system (colds, allergies, strep)-- even then for her, only strep is the big trigger...the viral stuff so far has caused very minor bumps...and increasing an antibiotic for a virus doesn't make sense to me.

 

I TOTALLY understand your concern about making sure your daughter is diagnosed properly--everyone on this forum wants all of these children to get the proper help. If you are unsure if you are looking at PANDAS or TS, please be very careful about using steroids. Steroids can make TS and Lyme worse.

 

Please, if you haven't, spend some time reading the helpful posts in the TS an Lyme forums...they may also give you a direction to go.

 

Good Luck.

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I can hear the frustration and stress in your voice. I am so sorry. I remember being where you are, and feeling so angry at the medical community. In the end, we ran the tests - my logic to justify was that testing during an exacerbation would give me as much evidence as I could possibly gather about her condition. If something was found, it might help treatment. And if studies in the future come out that help direct treatment more accurately, then I can look back at her tests, and potentially learn valuable information for future treatment.

 

We do use azith, and it clearly is doing something other than preventing strep at this point. I have talked to a lot of researchers & docs about this, and the studies seem to indicate that it is EITHER immune-modulating or anti-inflamatory. We are doing everything we can to ensure that she has a healthy immune system, so that we can someday reduce the dose, or live without it.

 

For your daughter, you certainly want to decide which of the illnesses she has, and what treatment is the most important. To make it more confusing, she could have co-morbid issues. We found that careful tracking of behaviors, treatment and results, using a scale, was ultimately what has made us comfortable that we are treating her in the best possible way at this time. It's awful to have to make these decisions as a parent. We always took the approach of doing one change at a time, then watching her carefully and trying to learn from what happened next. And we would do the least invasive treatments first. We were very cautious. In retrospect, honestly, we would have moved much faster had we known how well she would do on a PANDAS protocol. But that is hindsight, and we did take every step with care for her overall health.

 

You'll be ok - try to find a doctor that will consider this all with you, listening to your opinion as well - and yet will have the courage to tell you they would do with their own child - and will have the courage to adjust the plan if it is needed.

 

They are all tough paths - hope you find the right one for your family soon.

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I can hear the frustration and stress in your voice. I am so sorry. I remember being where you are, and feeling so angry at the medical community. In the end, we ran the tests - my logic to justify was that testing during an exacerbation would give me as much evidence as I could possibly gather about her condition. If something was found, it might help treatment. And if studies in the future come out that help direct treatment more accurately, then I can look back at her tests, and potentially learn valuable information for future treatment.

 

We do use azith, and it clearly is doing something other than preventing strep at this point. I have talked to a lot of researchers & docs about this, and the studies seem to indicate that it is EITHER immune-modulating or anti-inflamatory. We are doing everything we can to ensure that she has a healthy immune system, so that we can someday reduce the dose, or live without it.

 

For your daughter, you certainly want to decide which of the illnesses she has, and what treatment is the most important. To make it more confusing, she could have co-morbid issues. We found that careful tracking of behaviors, treatment and results, using a scale, was ultimately what has made us comfortable that we are treating her in the best possible way at this time. It's awful to have to make these decisions as a parent. We always took the approach of doing one change at a time, then watching her carefully and trying to learn from what happened next. And we would do the least invasive treatments first. We were very cautious. In retrospect, honestly, we would have moved much faster had we known how well she would do on a PANDAS protocol. But that is hindsight, and we did take every step with care for her overall health.

 

You'll be ok - try to find a doctor that will consider this all with you, listening to your opinion as well - and yet will have the courage to tell you they would do with their own child - and will have the courage to adjust the plan if it is needed.

 

They are all tough paths - hope you find the right one for your family soon.

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What helped me was when I got Cunningham's test and saw Dr. L. You are almost there so try to be patient with yourself. I know how frustrating this is and how overwhelming it is to be going down this road with very little medical support. My son got sick one month post IVIG and I took him to primary care doc . I asked if he would prescribe long term zith and he said no he wants to leave that to the specialist, so now I need to find a specialist. It is unbelievable that we are going down this path w very little medical help. hang in there.

Edited by keira
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I just wanted to add that, like Kayanne, my child does not relapse when off antibiotics. As for doing the blood tests to try to figure out if there's an infection and, if there is, what is it, I (personally)would like to try find out what's causing the symptoms. What is causing the inflammation. If my son does get sick again, even if the are willing to give me any antibiotic I want, any dosage I want, I would still want a strep test. For me, it is a way of monitoring his autoimmune disorder. Also, for my son, if it comes back negative, then I know to search deeper or realize something new is going on with him since he's always tested positive with rapids and/or cultures.

 

You can also view these blood tests and search for infection as a way of also help ruling out PANDAS in addition to backing up a possible diagnosis of PANDAS. If your child has a hidden infection (regardless of PANDAS or not) would you want to clear it?

 

As for docs giving meds even with negative tests...well, some kids do have infections with negative test and low titers. Yes, it's confusing and frustarting,but unfortunately, that's what it is.

Edited by Vickie
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even if the are willing to give me any antibiotic I want, any dosage I want, I would still want a strep test. For me, it is a way of monitoring his autoimmune disorder. Also, for my son, if it comes back negative, then I know to search deeper or realize something new is going on with him since he's always tested positive with rapids and/or cultures.

 

 

 

And if it is positive, then you know that you also need to check family members. (Well, you might want to check them anyway if your PANDAS child is having a ramp.) But, then you know to put other family members on abs as well, and not just your PANDAS kid.

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We need a "like" button on this forum, because I agree with what everyone else has said. When you child is sick you just want to FIX IT, so I understand your feelings. However, the more information you have, the better you can understand how YOUR child's body works, which will help you and the docs to interpret future illnesses more accurately.

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I'll add a small dissenting opinion here - my son was only 20 months at his onset, and was dx 6 months later (we thought it was the "terrible twos" at first). Our pediatrician initially did not order any bloodwork - he did a 30 day trial of abx to see what happens (we called it the "spaghetti on the wall dx" - throw it out there and let's just see what sticks). We saw a SIGNIFICANT improvement (over 50%) within 10 days on the abx. Our dr still didn't order bloodwork for one major reason - he said that in very young children some of the ASO titers and other immune work ups can be unreliable. When we saw Dr. Muprhy 6 months later, and she asked if we had titers run, we told her no, and why - she agreed that the results may not be reliable at that age. We did ultimately get them run a couple of months later - just to have them.

 

We have not done the Cunningham test as of yet - we're waiting until he's a bit older and can be included in her research.

 

So I agree - it's important to know what you're dealing with, but in our case there was a reason not to run the bloodwork just yet.

Edited by airial95
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Definitely in our case. All 3 of my kids don't get symptoms of strep (only one is PANDAS). So, if one child has a known infection, they all go in. Also, if one is directly exposed and I know about it, that child goes in.

 

To add to Airial's statement, yes, there are times when blood test may not need to be run. In the case of strep, if you get a positive rapid or culture, sometimes it may be better not to run blood since if it's the type of child whose numbers don't rise, the doctor gets confused (not the case with a PANDAS specialist). You'd think/hope doctors know things like some kids' titers don't rise, but they don't. When my son was sick, we did not run titers because he had positive rapids and in one instant a false negative rapid, but positive culture. That's all you need for a documented strep infection.

 

even if the are willing to give me any antibiotic I want, any dosage I want, I would still want a strep test. For me, it is a way of monitoring his autoimmune disorder. Also, for my son, if it comes back negative, then I know to search deeper or realize something new is going on with him since he's always tested positive with rapids and/or cultures.

 

 

 

And if it is positive, then you know that you also need to check family members. (Well, you might want to check them anyway if your PANDAS child is having a ramp.) But, then you know to put other family members on abs as well, and not just your PANDAS kid.

Edited by Vickie
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You are right. We don't know for sure if abx are clearing infections and/OR anti-inflammatory, and which one is the critical component (most likely both I believe) --

 

What we DO know is that for some children (in the midst of this paradigm called Pandas)-- for some, OCD and ticcing is eliminated (or at least decreased) with antibiotics. Off label, out of the box, and yet we know it as we have our kids who are living this in real-time.

 

I think the blood work is critical to both "check" all issues to be certain that they are being addressed, and to provide you with a tracking tool over time. We have two daughters who do flair with exposure to strep and other illnesses, and who have responded well to abx in the past. Many of us have found that cutting back abx may cause a flair--(Sammy Maloney as well.) For each of our children it is a balancing act, one day at a time to try to free them of the effects of this illness--(sure hope that White Paper comes out soon--)

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And add to all this, not all PANDAS docs do all the testing. (I think maybe some are participating in research studies & do more extensive work-ups.) We've only been requested to run the Immunoglobulin panel (& we were prepared for the worst but ds didn't make any fuss at all when they took 3 vials). We weren't advised to do Cunningham, & I'm sure PANDAS is sufficiently confirmed clinically to not run it. BUT, I'm still wondering about rising titers (ours were low during acute infection), but I might've missed the window to see any trends. I wonder about MP. I want to see a CBC with diff (becuz we did a few in the past, when he was 1 & when he was 4, & he had H Lymphocytes & L Neutrophils on all his tests--would like to see current). And there are other things I'm curious about, but I'm not a doctor. BUT I know once we do IVIG in 2 weeks (wow!) that I won't be able to run tests for a while. So...I'm likley going to try to talk our brand new doctor into running some things to have on file. That way we'll know.

 

But saying all that, then I also think that IVIG & the subsequent abx will work to rid ds of any infections that are likely there. So maybe it doesn't matter what they are. There's an Augmentin/penicillin allergy anyway, so we'll be treating with macrolides or other (OR should I run a test to be sure of that allergy since it limits treatment options?) I look forward to the first frost and a calming of seasonal allergies that may be working against us right now. And maybe after I do IVIG, I will feel comfortable using an allergy med (OTC or natural agent)...I ditched them except for occasional use due to the side effects, which I wonder now if the behaviors were maybe from PANDAS.

 

Good luck eljomom in making your decisions. I know you don't want to force a PANDAS dx, but something is leading you to look at it. At the same time, you wouldn't want to ignore PANDAS either if it IS there. And maybe the bloodwork will help confirm one way or another for you. We all have these same questions & can only do what we think is best for our kids.

 

(@kiera: Did you tell your PCP that it's not like you can look in the phone book for a PANDAS specialist, and that if he helps you that he has the chance to be one? Will Dr. L consult with him to get your meds? Also, I thought they were on abx for months post-IVIG.)

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eljomom-

 

I completely understand your frustration. I have been very careful and resistant to having testing done on my kids- it is torture for them. My mantra is- if the results could change our course of treatment then we do it. If not, I say no. Lots of docs like to see numbers- but it is not always necessary.

 

That being said, I would advise you to do a full workup now, at the start of your journey- prior to lots of antibiotics. You should certainly test for immune def, mycoplasma, lyme, and if you haven't had positive culture, run titers. I do think the Cunningham test is helpful.

 

For my kids, everything (so far) came back normal, except for the Cunningham test. It is helpful to have some results to back up what we know is going on.

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Thanks for all the feedback--I really appreciate it. Just really don't know what lies ahead, which is a scary place to be. If she is happy, generally, but ticcing head to toe most of the time, sometimes nonstop, then how happy can she really be? I can't imagine how she would survive in public school with her germaphobia either. How did she go from "normal-ish" to a full on Tourette's/ocd presentation in such short order? A "TS" doc will just tell you that "there's no NORMAL in TS, and it can start like that", and a pandas doc will tell you that it sounds like pandas.

 

Keira--who did your IVIG? It sounds like you saw Latimer---why won't she give you antibiotics? Does she not do follow-up?

 

Also, somebody wrote about steroids being a huge problem for TS and Lyme---yet Dr. T (a pandas-specialist who is a neuro and therefore would be a TS specialist too???) told me that there is no evidence of steroids increasing tics!! I have heard it time and again, that it's a big no-no to give TS kids steroids, so that is what really scares me in this whole treatment process. I know with pandas, they are likely necessary. This does not make me feel comfortable.

 

Well, blood draw was done...so now it's the big wait. I am predicting that absolutely nothing will show up. I kind of want that, but kind of don't---you know what I mean??

 

Thanks again for the support here!

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