Quinn's Immunological Results - Advice?

[ShaesMom]

Hello all. Thank you for such helpful posts. I have posted here a few times before, and haven't been able to in the last little bit. We have been on a bender of late. Add me to the list with the immunological workup. I am in the process of getting a copy of the blood work. Two years ago we had this done when diagnosing our asthma, and guess which part we failed...the pneumococcal titers. We were re vaccinated and I am not sure how we re tested or where we are at now. I can pretty much say we are not doing well. Also, I believe our IGG numbers were low.

 

Currently, we have had strep twice in 6 weeks, we are sorting our food by size and our having violent outbursts. Getting my daughter to eat is a challenge, and finding clothing that doesn't irritate her also a chore. She is finally becoming rational, and not hitting me every day. We just finished our last round of antibiotics less than one week ago, and her sister (who was also on antibiotics) tested positive again yesterday for strep. I have found another pediatrician locally from someone on the board who has had positive results. We have an appointment in two weeks, (the first available) and we are going to request the full Cunningham blood work panel to be done, and if it does not include it, and immunological work up for her and her sister. Something is not right. Both of my children have strep monthly, and one of them reacts violently. I have treated my husband, myself, my dog. I have sterilized everything in my house. We have ripped out all of the flooring and replaced it, we have switched schools, we change our tooth brushes, and again yesterday, we are positive. When I saw about the blood work, I remembered about ours, and I'm getting a copy. I am positive we failed that part of the test and they had even mentioned ivig to us before because our other numbers were low (although apparently not low enough). This gives me some hope. Thanks.

 

 

so sorry you are having such a hard time. My older son brought home strep last week. Everyone in the family is now on a 10 day course of abx. My husband and I both tested positive for Beta Hemolytic Streptococcus-Non group A. We have no idea what this means or what do about it. We think he might be a carrier but were told it wasn't contagious--then how I did I get It????

 

What kind of abx are you giving the kids? Is it possible one of them is a carrier? You need to advocate for 30 days of abx-preferably Keflex or Azith. Some like Augmentin but I like something stronger.

[nojo]

[i don't think one of us is a carrier, we have all been tested and we have all been treated at the same time even though we have tested negative. Current antibiotic, zithromax, prior, keflex, prior to that, omnicef. The dr. thinks the girls keep getting infected at school, we do get it more during the school year, but we still get it during the summer. We have cultured negative in between rounds of abx, so theoretically we have cleared. This is why we are going to try a diffeent dr. I think our current ped has done all he can do, and I can see why there could really be an underlying immune issue at work. I am also getting both of my daughters records from the pharmacys that we use to get a more comprehensive look at our antibiotic usage. The first of our 3 main pharmacies, shows 10 differnt abx prescriptions filled over the last 24 months. That is only one pharmacy, and we use 3.

 

My husband and I don't get the strep when the girls do, and we don't test positive even without symptoms. I'm willing to be treated again if it would help, but wouldn't I have to test positive to be a carrier? I am looking forward to pursuing the bloodwork with the new dr., I know she has already done it for someone else on the board. Thanks for the kind words, I'm beginning to feel like I'm crazy. The school nurse thinks we have a cleanliness problem in our home. She picked the wrong day to question my cleaning habits! I am going to beat this strep.

 

quote name=ShaesMom' date='Sep 18 2009, 03:15 PM' post='38469]

Hello all. Thank you for such helpful posts. I have posted here a few times before, and haven't been able to in the last little bit. We have been on a bender of late. Add me to the list with the immunological workup. I am in the process of getting a copy of the blood work. Two years ago we had this done when diagnosing our asthma, and guess which part we failed...the pneumococcal titers. We were re vaccinated and I am not sure how we re tested or where we are at now. I can pretty much say we are not doing well. Also, I believe our IGG numbers were low.

 

Currently, we have had strep twice in 6 weeks, we are sorting our food by size and our having violent outbursts. Getting my daughter to eat is a challenge, and finding clothing that doesn't irritate her also a chore. She is finally becoming rational, and not hitting me every day. We just finished our last round of antibiotics less than one week ago, and her sister (who was also on antibiotics) tested positive again yesterday for strep. I have found another pediatrician locally from someone on the board who has had positive results. We have an appointment in two weeks, (the first available) and we are going to request the full Cunningham blood work panel to be done, and if it does not include it, and immunological work up for her and her sister. Something is not right. Both of my children have strep monthly, and one of them reacts violently. I have treated my husband, myself, my dog. I have sterilized everything in my house. We have ripped out all of the flooring and replaced it, we have switched schools, we change our tooth brushes, and again yesterday, we are positive. When I saw about the blood work, I remembered about ours, and I'm getting a copy. I am positive we failed that part of the test and they had even mentioned ivig to us before because our other numbers were low (although apparently not low enough). This gives me some hope. Thanks.

 

 

so sorry you are having such a hard time. My older son brought home strep last week. Everyone in the family is now on a 10 day course of abx. My husband and I both tested positive for Beta Hemolytic Streptococcus-Non group A. We have no idea what this means or what do about it. We think he might be a carrier but were told it wasn't contagious--then how I did I get It????

 

What kind of abx are you giving the kids? Is it possible one of them is a carrier? You need to advocate for 30 days of abx-preferably Keflex or Azith. Some like Augmentin but I like something stronger.

[Kayanne]

Can't answer the steroid question but according to the excerpt I copied-then it looks like "yes" you should follow up with something.

 

I'm not sure that IVIG would bring the immune system to a "baseline". What it does is gives the body healthy IGG antibodies that can then attack any of the foreign invaders that are lingering in the body still.

 

When you have someone with an immune deficiency either they do not make enough of the antibodies (low Ig's or subclasses) or the ones that they do make are worthless (defective antibodies)-they do not go to work or even recognize a foreign invader. My immuno explained it like this:

 

Our body=house

Our antibodies=dog

Bacteria=thief

 

In a healthy immune system when the thief enters the house the dog will attack it. In an unhealthy immune system when the thief enters the house the dogs sits and wags his tail at the thief but does not attack him.

 

So, the IVIG gives the body plenty of healthy Igg's that immediately attack the bacteria that was floating around untouched by the faulty Igg's. So, my thinking is that when given IVIG for Pandas-the healthy antibodies eridicate any of the remaining strep that may be left over. But that brings up the question of why didn't the abx kill all the strep bacteria?? Can't answer that one. Is it possible that the abx can't "reach" the inflammation in the brain (can abx cross the BBB?) and that the healthy Igg's do? the steriods would bring down the inflammation but that affect isn't always long lasting right? So, let's say there are some left over autoantibodies hanging out in the basil ganglia-having a party-all of a sudden the healthy Ig's arrive and surrounded them and kill them. No one more autoantibodies attacking the brain- so slowly over time the inflammation would start to subside and pandas symptoms would decrease.

 

What do you think? Make sense? Way off base??

 

Again, not way off base at all. In fact it is the best explanation that I have heard as to why IVIG works. My daughter may not be anywhere near PEX or IVIG right now, but I don’t have any guarantees about the future, and I am struggling to make sense of it all. So I greatly appreciate your taking the time to post your understanding of what is going on.

 

As for the excerpt that you posted about PEX, it doesn’t really apply to PANDAS because in this particular autoimmune disorder, the offending antibodies are not being continuously made by your body….once the strep is cleared, the antibodies subside, thus resulting in the waxing and waning of symptoms.

 

That is why PEX can stand alone, why a one/two time treatment of IVIG has a high success rate, and why an indefinite use of prednisone is not required.

 

So IVIG could be working because it is helping to clear a stubborn infection, or it could be killing the auto antibodies or both?

 

As far as the BBB, I’m still at a loss as to how that plays into it…If anyone who can fill me in it would be great!

 

As far as prednisone not being long lasting…yes I think the typical “5 day burst” that many parents do is more for diagnostic purposes… to distinguish PANDAS from non-autoimmune tics/OCD, and it doesn’t last because it is not taken long enough to fully address the brain inflammation.

 

But when used as a treatment, it is just as permanent as IVIG or PEX…until the next strep or viral issue hits.

 

Best of Luck,

Karen

[dcmom]

Hi all,

 

I am also struggling to understand the mechanism of this disease. But here it goes:

 

the child has to be genetically succeptible.

they have a trigger- strep- where the immune system creates autoantibodies.

then, there needs to be a weakened blood brain barrier for these antibodies to get to the brain.

 

I think I see this almost daily in my dd. She is doing ok. She has that edge to her personality and is definately tense, but we usually manage. However when she gets overtired, and/or stressed: watchout the pandas stuff comes back (but can be short lived).

 

So I think with pex if you remove the antibodies, and then the bbb and the brain have a chance to really heal- maybe your are resetting them. Hopefully they will be okay unless something like strep (in some cases I have heard a vaccine) reactivates the whole thing.

 

My question is what is the "molecular mimicry" and cell signaling stuff I read about, and where does it fit in to my over simplified understanding?

 

The other question is: I know pex removes bad antibodies, and IVIG maybe retrains immune system and/or closes the bbb, but what can/might the high dose antibiotics (like in saving sammy) do? Can high dose antibiotics over a long period of time clear the bad antibodies and close the bbb?

 

please comment...

[Kayanne]

Hi all,

 

I am also struggling to understand the mechanism of this disease. But here it goes:

 

the child has to be genetically succeptible.

they have a trigger- strep- where the immune system creates autoantibodies.

then, there needs to be a weakened blood brain barrier for these antibodies to get to the brain.

 

I think I see this almost daily in my dd. She is doing ok. She has that edge to her personality and is definately tense, but we usually manage. However when she gets overtired, and/or stressed: watchout the pandas stuff comes back (but can be short lived).

 

So I think with pex if you remove the antibodies, and then the bbb and the brain have a chance to really heal- maybe your are resetting them. Hopefully they will be okay unless something like strep (in some cases I have heard a vaccine) reactivates the whole thing.

 

My question is what is the "molecular mimicry" and cell signaling stuff I read about, and where does it fit in to my over simplified understanding?

 

The other question is: I know pex removes bad antibodies, and IVIG maybe retrains immune system and/or closes the bbb, but what can/might the high dose antibiotics (like in saving sammy) do? Can high dose antibiotics over a long period of time clear the bad antibodies and close the bbb?

 

please comment...

These are also questions that I have...I can't seem to understand the molecular mimicry paper...this has been a struggle because I have don't have a medical background.

 

Perhaps we should start a new thread...the mechanisms of PANDAS

[ShaesMom]

Hi all,

 

I am also struggling to understand the mechanism of this disease. But here it goes:

 

the child has to be genetically succeptible.

they have a trigger- strep- where the immune system creates autoantibodies.

then, there needs to be a weakened blood brain barrier for these antibodies to get to the brain.

 

I think I see this almost daily in my dd. She is doing ok. She has that edge to her personality and is definately tense, but we usually manage. However when she gets overtired, and/or stressed: watchout the pandas stuff comes back (but can be short lived).

 

So I think with pex if you remove the antibodies, and then the bbb and the brain have a chance to really heal- maybe your are resetting them. Hopefully they will be okay unless something like strep (in some cases I have heard a vaccine) reactivates the whole thing.

 

My question is what is the "molecular mimicry" and cell signaling stuff I read about, and where does it fit in to my over simplified understanding?

 

The other question is: I know pex removes bad antibodies, and IVIG maybe retrains immune system and/or closes the bbb, but what can/might the high dose antibiotics (like in saving sammy) do? Can high dose antibiotics over a long period of time clear the bad antibodies and close the bbb?

 

please comment...

These are also questions that I have...I can't seem to understand the molecular mimicry paper...this has been a struggle because I have don't have a medical background.

 

Perhaps we should start a new thread...the mechanisms of PANDAS

 

I don't get the molecular mimicry stuff either.

[P_Mom]

I don't think anyone really knows exactly how all this stuff works...that is the problem. I think we are living in the "test" decade (our families and kids)....our kids are going to pave the way for acknowledgement, understanding, and proper treatment for this disorder in the near future. Good news for our Grandchildren! (and everyone else) Unfortunately, we are the ones that will go through questioning, doubting, frustration, looked at like we are nuts, confusion, fear, hope, and.... we will be very tired from researching!! But, we are getting there...our kids are benefiting and beginning to get the proper help! We can do it, and we'll make it through!!

[EAMom]

(I hope I'm getting this right!)

 

Molecular mimicry is where the dog (antibodies) gets confused and starts attacking part of the house (basal ganglia, heart in rf) instead of the burglar (strep). A part (a molecule) of the house "mimics" (looks like) the burglar to the confused dog.

[dcmom]

okay, so molecular mimicry is the reason the antibodies attack the brain, and just another piece to this puzzle. The creation of all of the antibodies is because of strep- is this "confusion" (molecular mimicry) caused by strep also, or a wacky immune system, or genetics? Is this the same thing that happens in most autoimmune diseases?

 

What is "neuronal cell signaling"?

 

thanks.

[ShaesMom]

(I hope I'm getting this right!)

 

Molecular mimicry is where the dog (antibodies) gets confused and starts attacking part of the house (basal ganglia, heart in rf) instead of the burglar (strep). A part (a molecule) of the house "mimics" (looks like) the burglar to the confused dog.

 

 

So it's basically the same thing as saying autoimmune-the body attacks itself rather than the infection. Great explanation!!

[peglem]

But, are the strep antibodies actually attacking/destroying brain cells? Or are they stimulating them, causing them to transmit erroneous impulses? Here's the thing:

If you look at other autoimmune diseases like type1 diabetes- the insulin producing cells are actually being killed, so that they are gone. But I think the molecular mimicry thing means that the antibodies are causing the basal ganglia cells to perform abnormally, but not attacking/killing them.

[ShaesMom]

But, are the strep antibodies actually attacking/destroying brain cells? Or are they stimulating them, causing them to transmit erroneous impulses? Here's the thing:

If you look at other autoimmune diseases like type1 diabetes- the insulin producing cells are actually being killed, so that they are gone. But I think the molecular mimicry thing means that the antibodies are causing the basal ganglia cells to perform abnormally, but not attacking/killing them.

 

 

Great question!

[sf_mom]

I just wanted to say thanks for posting this information. Its a great reference point. We too did most of the tests prior to IVIG yesterday and will post results once I get them.

 

-Wendy

 

 

Hello:

 

We just got back our immunological work up and wanted to share our results and the doctors treatment plan to get some feedback.....

 

Quinn had IVIG at Dr. K's dosage level with a Pediatric Oncologist 2 weeks ago. Prior to the IVIG, we drew his blood and just got back the results today.

 

He failed all 14 of the Pneumoniae titers. He also failed the Hep B titer.

 

He was normal on the IGG 1-4 subclasses, but on the very lower end of normal. He was normal for the IGM and IGA and high for the IGE (allergy related)

 

He was positive for Epstein-Barr,

 

He was high for Isohemagglutinin Titer.

 

And his T and B cells were abnormal.

 

This immunologist says that he treats and believes in PANDAS, but he wants me to realize that PANDAS is just the symptom and not the problem. The problem is the weakened immune system! He said if the symptom wasn't PANDAS, then it could be another autoimmune disease. We discusses my daughters GI issues and he said that can be how she responds to a weakened immune system.

 

Now the biggie...... he wants us to do IVIG every 2-3 weeks for 6 months. It will be at a lower dose than Dr. K's recommendation. Any thoughts??????

 

Elizabeth