WORSE AFTER IVIG BUT TITERS HAVE TRIPLED!

[bubbasmom]

My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on.

So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups.

Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.

[Fixit]

so you had ivig 3/22/10?

i think some have said it may be crazy for up to 6 weeks post??

so you had titers drown this week post ivig......maybe that's why it may get worse before it gets better...

it stirs things up like dr K says?

maybe someone can back me up on that?

 

 

My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on.

So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups.

Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.

[bubbasmom]

how can it raise titers though? Titers supposedly only measure strep antibodies. I hope IVIG doesn't increase strep antibodies that seems like 2 steps back.

 

so you had ivig 3/22/10?

i think some have said it may be crazy for up to 6 weeks post??

so you had titers drown this week post ivig......maybe that's why it may get worse before it gets better...

it stirs things up like dr K says?

maybe someone can back me up on that?

 

 

My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on.

So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups.

Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.

[Fixit]

i don't know how it would raise titers...but i would also ask why, for some, do the symptoms seem to get worse for a period after ivig before they get better.

i think my theory about silent strep comes into play...

mayb like soup thing settle to the bottom...ivig stirs them up into the air(titers were there just resting somewhere) so the medications, ivig can do their work..otherwise its chronic just sitting there and these conditions go on for years or a lifetime..

sort of why i thnk, since ds has had 8-13 strep infections..and he hasn't tested pos in about 2 years(i think) but abx's worked because docs wanted be safe due to past history...and why with ds pos myco p...biaxin sort of soften things...but augmentin seriously almost knocked out ds' tics...

i think it is somehow still related to strep in his body somewhere

i think strep for these kids my have to be evaluted the same way lymes is

JMHO

 

ps,,,i now think it would be interesting to have a titer test 1 week before ivig and 1,3,6,10 weeks after ivig

i think that may give some more info into what is happeing in conditions worsending and then getting better

 

 

how can it raise titers though? Titers supposedly only measure strep antibodies. I hope IVIG doesn't increase strep antibodies that seems like 2 steps back.

 

so you had ivig 3/22/10?

i think some have said it may be crazy for up to 6 weeks post??

so you had titers drown this week post ivig......maybe that's why it may get worse before it gets better...

it stirs things up like dr K says?

maybe someone can back me up on that?

 

 

My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on.

So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups.

Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.

Edited April 3, 2010 by Fixit

[peglem]

how can it raise titers though? Titers supposedly only measure strep antibodies. I hope IVIG doesn't increase strep antibodies that seems like 2 steps back.

 

so you had ivig 3/22/10?

i think some have said it may be crazy for up to 6 weeks post??

so you had titers drown this week post ivig......maybe that's why it may get worse before it gets better...

it stirs things up like dr K says?

maybe someone can back me up on that?

 

 

My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on.

So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups.

Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.

Remember, you are not measuring the antibodies that cause PANDAS w/ ASO and AntiDnase...and I would be suspicious of these results because its hard to know what is going on after IVIG. Were there titers in the donor plasma that increased total titers? Did your son have some undetected strep somewhere that the donor IgG is clearing? If PANDAS symptoms have increased-have the abnormal antibodies that cause PANDAS risen? Or has something happened to the BBB to increase antibody access to brain?

 

You mentioned that he definitely does not have lyme disease- wondering how you know? Really I wonder how anybody can know- neg. test results do not rule it out and all the symptoms could be caused by something else. Honestly, I don't see how anybody, including lyme literate doctors could say for sure. Do they rule it out by a non-response to lyme treatment?

[thereishope]

So you had titers checked after IVIG? Just to make sure...he is on an antibiotic still (post IVIG), right?

 

And prior to the increased levels, when was the previous draw and what antibiotic was he on prior to IVIG?

 

Have you ruled out strep in all family members?

[sf_mom]

You really have to check everyone in the family for strep.... rapids, cultures, ASO, Anti-DNAse-B.

 

 

After our third IVIG we found out my husband's titers were elevated in the positive range.

 

ASO: 283

 

Anti-DNase-B: 680

 

 

We've treated him for 40 days of antibiotics and his titers only moved slightly.

 

ASO: 249

 

Anti-DNase-B: Still 680

 

-Wendy

[bubbasmom]

Okay, can someone explain to me how antibiotics effect antibodies IN LAYMAN'S TERMS. Because antibiotics should not, in my opinion, have anything to do with antibodies. Antibiotics should only treat the infection and prevent you from getting further infections.

 

So to answer the question, yes he's ALWAYS on antibiotics but that shouldn't change the titers. And if he were give IG that had antibodies in it or whatever, I would think that would be kind of 'against what they screen the IG for'.

Ya got me. I'm not a doctor, I am quite medically literate for the most part. And I find even my doctor picking at straws sometimes!

 

So you had titers checked after IVIG? Just to make sure...he is on an antibiotic still (post IVIG), right?

 

And prior to the increased levels, when was the previous draw and what antibiotic was he on prior to IVIG?

 

Have you ruled out strep in all family members?

[thereishope]

You're right. The antibiotic does not affect the antibodies. However, I was asking what antibiotic he was on prior to IVIG to try to see if he had an infection that the antibiotic wasn't erradicating and the titers were continuing to rise since his previous blood test. Hence, why I was also curious what the timeline was in between tests. As to the question about antibiotic post IVIG, I was making sure he had some type of protection after IVIG. I know DR K is good about that. However, the one thing I have heard is if the child is prescribed Augmentin as the prophylactic, it may be more beneficial to have it taken twice a day as oppose to the one dose a day that is sometimes prescribed.

 

If someone in the family has strep, that may make your child titers rise just by being exposed.

[peglem]

Okay, can someone explain to me how antibiotics effect antibodies IN LAYMAN'S TERMS. Because antibiotics should not, in my opinion, have anything to do with antibodies. Antibiotics should only treat the infection and prevent you from getting further infections.

 

So to answer the question, yes he's ALWAYS on antibiotics but that shouldn't change the titers. And if he were give IG that had antibodies in it or whatever, I would think that would be kind of 'against what they screen the IG for'.

Ya got me. I'm not a doctor, I am quite medically literate for the most part. And I find even my doctor picking at straws sometimes!

 

So you had titers checked after IVIG? Just to make sure...he is on an antibiotic still (post IVIG), right?

 

And prior to the increased levels, when was the previous draw and what antibiotic was he on prior to IVIG?

 

Have you ruled out strep in all family members?

Antibodies are made by the immune system to combat microrganisms (like bacteria). Antibiotics should reduce bacteria- so your immune system should make fewer antibodies to bacteria if the antibiotic is working to reduce the bacteria.

 

But, ASO and AntiDnase titers are not antibodies to bacteria. They are antibodies to toxins that are excreted by strepA. ASO and AntiDnase do not cause illness. They are made by the immune system to remove toxins made by strepA.

 

So, if your son has been on antibiotics and had IVIG, the question is where these high titers came from? If the dose of IVIG was high enough, your son's own production of antibodies should have stopped (or been greatly reduced) until the donor antibodies go down enough that the bone marrow is signalled to make more. So, I was thinking they were either

-made by your son prior to the IVIG and are still circulating

-introduced into circulation w/ the IVIG (I'm thinking they would not be screened since they are seen as protective against the aforementioned toxins)

or, they are being produced by the donor IgG in response to toxins from strepA.

 

This is speculation by me based on what little I have learned about the immune system and IVIG. I don't know much, and if I have this wrong I certainly hope somebody will come along and straighten it out...then I'll learn more, I guess.

[Joan Pandas Mom]

Did your son have a T&A?[

 

quote name=bubbasmom' date='Apr 3 2010, 02:54 PM' post='62146]

My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on.

So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups.

Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.