why immunology testing

[P_Mom]

Could they be wrong? Sure, but, pnuemococci and strep A are two totally different strains of bacteria. The S. pnuemonia tests/titers show response to pneumococci (sp?), not Strep A. When I was speaking to Diana...I got a very different impression....I don't like to post our conversations.....so, I won't (well just a little..sorry! She ends up getting flooded with e-mails)... but, I do know that it was Diana who suggested the connection to Dr.C, DR.C did not immediately disagree, however, from my understanding, told Diana she "could" be right .........I'll have to ask Dr. C or Latimer myself....I am just careful about the he said/she said stuff. I like to not just hear things....but get the info. myself. I think some of us, myslef included sometimes, jump the gun on things and come up with our own hypothesis and then post.....not a bad thing....that is what we do here, brainstorm. Just be careful about what you read and take to heart.

 

 

I am not saying there is no connection with all this and PANDAS....however, nothing has been proven....EXCEPT the correlation with Strep A. But, I do know new things can arise....

[KeithandElizabeth]

To add to what you are saying Kelly, I think that some of us are now going to immunologists who obviously focus on the immune system. It is interesting because we have spoken with psychiatrists, oncologists/hematologists, pediatricians and an immunologist and you definitely get a bias and a different treatment plan based on what type of doctor you are seeing.

 

What is so hard now is to come up with your own decision about how to treat your child when you are getting such different types of feedback. Dr. K said that we would only need one IVIG treatment. And he does have a history of an 80% success rate. Our immunologist feels that we are dealing with an underlying issue and we should not walk away with one treatment and not further make sure that our son's immune system is in a strong place. He further said that we may see other issues in 5 or 10 years if we do not deal with and strengthen the immune system. Our son is doing great right now 5 weeks post IVIG per Dr. K's protocol. It is such a hard decision!

 

 

Elizabeth

[P_Mom]

Elizabeth....I know what you mean....I completely agree. It is soooo hard when you are hearing such conflicting info. out there. You don't know who or what to believe..... I am hoping the one IVIG treatment works...but, from what I am seeing....I am not so sure. But, who knows.

 

Anyway, I am glad your son is doing well post IVIG and I hope he continues to do so.....that is the bottom line.

[ShaesMom]

I am hoping the one IVIG treatment works...but, from what I am seeing....I am not so sure.

 

So Kelly, in your opinion, what do you think the correct treatment plan should be? I gather from your responses that you are not really on board with the thinking that there are underlying immune issues for some of these children yet you state above that you are not sure one IVIG is working.

[colleenrn]

I asked Dr. Swedo back in 2001 if she thought other strains of strep could cause PANDAS and she smiled and nodded her head.

 

Strep A may be the most common cause, but I don't believe it is the only cause.

 

Colleen

[ShaesMom]

I asked Dr. Swedo back in 2001 if she thought other strains of strep could cause PANDAS and she smiled and nodded her head.

 

Strep A may be the most common cause, but I don't believe it is the only cause.

 

Colleen

 

Thank you for sharing that.

[P_Mom]

Colleen....I agree there may be other causes......my point was that the s.pneumonia titers have nothing to do with Strep A. I also pointed out other things could arise....and that all these things may be connected. I try to be so careful with wording......

 

This is where the forum gets sticky...although extremely helpful....it is just hard to put all your thoughts down in writing without people misunderstanding it sometimes.

 

ShaesMom......to try to answer your questions in wiiting to the best of my ability.....

 

Not in my opinion, but, in Dr.K and Latimer's opinion...treatment for PANDAS currently consists of antibiotics, steroids, IVIG, or Pex. We all know that. As far as underlining immune issues go....PANDAS IS an immune problem! What I am saying is ..what kind of immune problem? Over-active antibodies that attack the brain as speculated??Or is it a

deficiency? Or failed s.pneumonia titers? I am just saying that it is hard to say that the PANDAS in these kids is caused by a deficiency...or falied s. pneumonia titers at this point. Some kids have a deficiency........some don't. My older son passed.....my younger son was only slightly below reference for IGG, nothing to treat or worry about. I know PANDAS children on here, and off, who passed these particular immuno. work-ups......and some didn't. Is this the cause PANDAS? I really don't think anyone can say yet. Dr Latimer told me 3 weeks ago when I spoke with her to "put the s. pneumonia titers out of your mind. Don't even worry about those." THAT is what I am not quite on board with.....yet..... To say PANDAS is a immune deficiency or because of falied s. pneumonia titers, but, I realize it is something that needs to be explored more. Is PANDAS an underlining immune problem...well, YES, but, what???

 

As far as one IVIG working, I am just going by the dozens of kids on here and off that I know of that have not been "cured" with one treatment. Latimer told me that "sometimes" it works....sometimes it doesn't, and sometimes these kids need several treatments.No doc out there, who is being honest, can give you any absolute answeres. It is a "try this and see." In recent e-mails, Dr. K is no longer promising cure after one treatment....atleast not to me.

In Swedo's studies, one IVIG treatment did not cease PANDAS symptoms 100%....not in any. However, yes, it does seem to be a good treatment and helps many kids. You don't seem to realize how bad I want one IVIG treatment to be "it." Why in the world wouldn't I...I have two PANDAS boys! I have just not seen any "cured" with one treatment. If it is a cure..like someone said...why do they need to stay on antibiotics? Why did a child who had IVIG 3 years ago with good results, just recently have a bad PANDAS flair requiring IVIG again?? We can't answer these questions...that is my point...it is too early to tell.

 

Can you say for sure the underlying immune issues these PANDAS kids have is a deficiency or because of failed s. pneumonia titers? I can't..neither can Dr. K or Latimer....not yet.

 

Can you say for sure that one IVIG is all that is needed? I can't...the statistics just don't support it, and, I don't want to put posts out there telling people their kids can be cured with ONE IVIG. Two, three...maybe. Maybe even one... I just haven't seen it, but, that doesn't mean it can't happen.

 

That is my whole point.....we just don't know. That is it. PANDAS is an immune problem...I know that...but, what?

 

I am not "downing" any of these treatments....I would be willing to try them ALL if needed. I am just accepting the fact that it is possible this may be a long road for many of us until the answer is found. And, I don't mind if people disagree with me........

 

Like I said......I hope all the children do well....whatever treatment you choose...I wish you all the best.

[dcmom]

Pmom, I agree with you. I have researched too many posts, and talked to too many people to feel that one or even two IVIG treatments is a cure for every child with pandas. It certainly seems to be at minimum a treatment, though, and possibly a cure (with abx) for others. Why do some kids seem to have pex and/or ivig, stay on antibiotics, and do well- where others relapse? Is it that some had a somewhat unrelated immune issue? Did their weaker immune system , even with the abx, leave them more open to get strep or another bacteria that causes the relapse?

 

A family in town had a child in the original swedo study. Her daughter had classis pandas onset, pex, and then stayed on abx untill after the age of 16, and never had another issue. Is part of this just luck- that she wasn't exposed to certain strains of strep again?

 

I think we, individually, have to be as aggressive as we are able to in fighting pandas. I think our kids will be grown before doctors will tell us what the answers are- we have to figure them out for ourselves.

 

This is the hard part.

 

I am thankful for this forum- as no one else in my life is as interested in talking about this as incessantly as I am You are all a great comfort and companion to me!

[Megs_Mom]

I am exploring the Immunology route for Meg as well as Rheumatology. I have a horrid suspicion of Lupus, which I hope I go to my deathbed someday, wrong about! We try hard to balance exploring what is happening to her, with having a normal life. It's a balance, and I try every day, not to be a "nutty PANDAS mom", which is really my now natural state .

 

I think there may be more than one answer to the question "why are our children vulnerable to PANDAS?" Why one kid, and not the next? Why do antibiotics and ERP therapy so far give us a 98% remission? Why does another child need IVIG, and another PEX? Why is Pixie still struggling? A number of factors may play in here - heredity, underlying immuno challenges, environment, different strains, dumb luck.... The hard thing to me, is that there is not enough research going on in the medical community. So it's up to us - parents as scientists! We will never be fully objective - and that is not our job. It is our job to love and to have faith in our children. Somehow, we have become their case managers as well.

 

But hopefully, by sharing ideas, by disagreeing calmly (which you are all doing a great job of on this site - politicians could learn from you all!), perhaps someday, one of our ideas will motivate a scientist to listen & explore. So keep talking, keep your opinions strong, and keep exploring. I wish you all the very best!

[P_Mom]

Meg's Mom...Dc Mom,

 

YES! That is what I mean...this thing is so crazy.....who knows what is going on and why? More research!!! Yes!!

 

My older son passed all his immono. work-ups...from all immunoglobulins to tetanus, diptheria, pertussis, all subclasses...and yes, even the s.pneumonia titers. Yet, on Sept, 17, 2007, he woke up with multiple motor tics and ADHD...all from a recent, documented strep infection. He was "normal" the day before. Is he an example of a "pure" PANDAS case? Is there such a thing? Do other kids have their PANDAS complicated by other issues???

 

This is why it is all sooooo confusing.........nothing seems to correlate....no kid is the same with anything (symptoms, response to treatments, immune issues, etc.).....very difficult. The only correlation I have seen SO FAR is strep A......NOT saying there couldn't be anything else!

 

I am also thankful for this forum....and what we do on here needs to be done. And yes....let us all agree to disagree respectfully.....afterall, we are all in this boat together...aren't we! We are all just trying to help our kids!

 

We'll get there!

 

Kelly

[ShannonOtown]

Pushing for answers, debating facts and questioning ideas is the root to finding solutions. The more we ask 'Why', the more we spark ideas in the minds of researchers. I have to believe more than just moms and dads post to this forum. Hopefully our 'What Ifs' will start the wheels turning with doctors and researchers. We are the ones living daily with PANDAS, keeping journals, tracking symptoms and correlating them to other factors, therefore we as parents might be the ones to find a cure... or jump-start the research process.

 

We are passionate about helping our kids and our convictions will pay off.

I enjoy reading everyones views. Thanks to the advanced members keeping on top of everything.

Shannon

[KeithandElizabeth]

Shannon: I agree that it is important for us to have these healthy debates. This is really how we can learn from each other. And I think it is important to compare notes from our doctor visits. Think of how many second opinions we are getting.

 

dcmom - I had to laugh with your comment "no one else wants to talk as incessantly about this....." I can so empathize with this comment. And I guess this is why I am on this forum so much.

 

Well, I will be going in for my Non-PANDAS daughter's (with the high Cunningham bloodwork) results this Wednesday. I am compiling a list of questions for our immunologist. I will further ask him about his theory with the S. Pneumo titers and Strep A and what he sees as a correlation between the blood work in the PANDA children that he is treating.

 

Elizabeth

[ShaesMom]

Kelly-

 

Thanks for the reply. I hope I'm not coming off as being judgemental-it is not my intention. I was just curious what your opinion was. I have my own opinions and thoughts but I by no means feel that they are "the answer" to everyone's problems. I do feel very passionate about the immunological connection-but I also realize that it may not be the answer for every child with Pandas. I'm a Christian woman and I feel like our personal journey has been very simple compared to what many others have been through. I believe that the answers may have come more easily for us because of my faith and that it is now my responsibilty to pass those answers on. If it helps only one child on this forum-fantastic. If it helps a dozen children on this forum--what a blessing!

 

She just had her fourth round of IVIG last week. I can honestly say in all of her seven years I really don't think I've ever seen her as happy as she was this weekend. In my heart-I know we are on the right path for her. She feels GOOD for the first time in her life. What a blessing!! I want that for every child here and parent!

[P_Mom]

Hi Shaes Mom,

 

Hey, I am cool with all this.....not taking anything personally!

 

I am very happy your daughter is doing well....that is a blessing. I share the same faith as you, so, I too am trying to listen very intently...........

 

Just a thought....could your daughter's improvement be due to the IVIG taking care the immune dysfunction in PANDAS (over-active antibodies attaking the brain...this is the current hypothesis)...or, do you believe the improvement is due to the IVIG correcting the S. Pneumonia non-response? Did he try to re-vax your daughter...I can't remember...I know someone on here didn't get re-vaxed...but, someone did, and then showed an adequate response. Just curious....

 

Just a thought....either way, I know it doesn't matter, what matters is your daughter is doing well.....my wishes are for your daughters continued happiness!!!!!!!!!!

 

Kelly

 

 

About the S. Pneumonia vaccine........

 

 

 

Due to the difficulties in providing successful antibiotic treatment for S. pneumoniae, based on drug resistance and the exacerbation of the inflammatory response by bacterial lysis, vaccine development has been pursued. There currently exists a 23-valent capsular polysaccharide vaccine to protect against S. pneumoniae infection [34]. The decision to develop a capsular polysaccharide vaccine was based on the knowledge that antibodies formed against the capsule are very effective in preventing lethal S. pneumoniae infection. However, the antibodies formed against the capsule are type-specific, and as mentioned earlier, at least 90 different types of S. pneumoniae exist [34]. Thus, the vaccine was constructed using 23 of the most common strains. The vaccine has been very effective in young adults, but less successful in the elderly. Also, the vaccine does not stimulate adequate antibody responses in children under 2 years of age [34].

 

The possibility of creating polysaccharide-protein conjugate vaccines was proposed when work with animals found polysaccharides could be made more immunogenic if coupled to proteins. Capsular polysaccharides of pneumococcus have been joined to tetanus toxoid, diphtheria toxoid, CRM197 (a nontoxic form of diphtheria toxoid), pneumolysin and outer membrane proteins of meningococcus [34]. The tetanus and diphtheria toxoid conjugates have been the most successful. The problem in the case of S. pneumoniae remains that many different capsular types must be included. Thus, individual conjugates must be made and placed in a vaccine together [34]. A certain amount of conjugate is required to stimulate a specific immune response. Thus, the number of different strains which can be included is limited [34]. Also, as mentioned above, it has been found that children do not respond well to polysaccharides until they are over 2 years of age. Thus, it would seem that there is some disadvantage in making a vaccine which attempts to elicit such a response. This encouraged the search for substances other than capsular polysaccharides which could serve as antigens and provide protection against pneumococcal infection [34

 

 

 

So, why do they give the s.pneumonia vaccine to our children in the first year of life when it is shown they do not create an adequate response???? So, if that is the case....shouldn't it be the norm, (which it may well be, our immuno. doc said he sees it all the time), for our kids to fail the s. pneumonia vaccine?? Dr. Latimer said it is very likely that the vaccine is just a bad (meainng failure) vaccine, and to forget about it. It was released in 1999-2000, so, it is new and there are very limited studies on what an adequate response to this vaccine should be, let alone any long term side effects it can produce. Nobody knows. She said we all never got the vaccine (us older folks), and we are fine. Your body produces antibodies to the different strains as it is naturally exposed to them. So, if your child only passed one or two titers, then, those would be the strains they were naturally exposed to and created adequate antibodies against. Others should develop over a persons lifetime as they are exposed.

[smartyjones]

I am thankful for this forum- as no one else in my life is as interested in talking about this as incessantly as I am You are all a great comfort and companion to me!

 

oh dcmom - so right with you. Last week, my husband suggested i change my name to obsessedmom - i was like - that wouldn't differentiate - we're all obsessed!

 

i wasn't upset - yesterday, my fil who worked in hospitals in the military said he didn't think danny really looked any worse for wear from anything and he'd probably outgrow it all. they just can't understand!