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Kelly- Just to second what you said- our ID doc at Georgetown said that they see these failures in "normal kids", and actually no one has pulled a group of these titers to see whether most/many kids fail or not. Shaesmom- did your immuno give you any info why he treats kids that fail these titers? Just curious.

 

I think it is great that you are able to get frequent IVIG! I have been thinking for a while that IVIG is more a therapy for pandas, than a cure. For many who relapse, it seems to help initially, so why wouldn't it be helpful to do as frequent as the child needs. (unfortunately insurance and doctors get in the way...) PEX has also been a "cure" for quite a few- so in that sense how are the pneumo titers relavent. I am just trying to understand this...

 

shaesmom- I am glad you have your faith- but I don't think it is helpful to imply that is the reason you have found the answers for your daughter. That is a big statement, which also implies there are reasons that others have not found their answers. Maybe that is what you believe, but I don't know if it is so helpful to put that out there. I am biased, because I am a humanist, but I know there are many here who have been struggling for quite a long time, and it is not because they are not trying, or do not have "faith"- it is because there is not a lot of help in the medical community, it is because some cases are more difficult than others, and maybe it is because there are underlying or comorbid issues with some kids.

 

I think everyone on here is going beyond to help their kids, and it touches and inspires me on a daily basis...

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DCMom....Great point about the PEX and the pneumo titers....now why didn't I think of that? :angry:

That would also apply to immune deficiencies...right? If the problem were a deficiency......why would PEX be so effective? PEX removes antibodies. Wow..DCMom..that is a big light bulb moment. And steroids...why are they so effective in PANDAS, too?

 

 

I am a Christian myself, however, also struggled with that statement.

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Kelly,

 

The information that you have regarding the S. Pneumonae vaccine is for the Pneumovax vaccine. You are absolutely right-it is not for anyone under the age of 2. Our children received Prevnar, which was introduced in 2000. It contains seven serotypes not 23. Prevnar is not given to anyone over the age of 5. Prevnar is not a polysacchardic vaccine but a conjunate vaccine.

 

There are two types of pneumococcal vaccine, pneumococcal polysaccharide vaccine and pneumococcal conjugate vaccine.

 

The first pneumococcal polysaccharide vaccine was licensed in the United States in 1977. In 1983, an improved pneumococcal polysaccharide vaccine was licensed, containing purified protein from 23 types of pneumococcal bacteria (the old formulation contained 14 types). This pneumococcal polysaccharide vaccine is commonly known as PPSV23. The PPSV23 vaccine is licensed for use in adults and persons with certain risk factors who are age two years and older.

 

The pneumococcal conjugate vaccine was licensed in early 2000. It is recommended for use in preventing pneumococcal disease in infants and young children (from age six weeks to the 5th birthday). It is commonly known as PCV7.

 

For the complete article:

 

http://www.vaccineinformation.org/pneumchild/qandavax.asp

 

Our Immunologist, Dr. Kobayashi, disagrees with Dr. Latimer. He believes that failing the Pneumo Titers IS significant and warrants monthly IVIG. I have visited with several of his other patients, including one who travels three hours one way, because he is considered one of the best Immunologists according to the Immune Deficiency Foundation. In addition to his practice here in Nebraska and his teaching at UCLA, in his spare time he testify's for patients and lobbys for IVIG approval with their insurance companies-free of charge.

 

http://allergynebraska.com/index.php?title...da956bcd89ea744

 

My daughter was hospitalized twice between 18 months and 2 1/2 years. Once for complications from the flu-no one else in the house got this flu-and once for an infection called Pseudomonas which was in her urinary tract. The Pseudomonas infection should have been an indicator to her Ped that she had something more serious going on. Pseudomonas is resistant to over the counter abx and is a very rare infection that usually only occurs in elderly individuals who are already hospitalized and those with a comprised immune system. She spent more time on abx between age 2 and today then she did off. Since her dx of a PIDD we have been back to the Urologist and GI doctor. We have found that she a problem with her right kidney and she has Eosinophilic cells in her esophagus, tummy, and colon. We won't know until further testing is done if it this means additional food allergy's or something more serious. One of the causes can be antibody deficiency-hummmm-we already know she has that. Unfortunately for us, this is another new area where a lot of research has not been done. Oh - did I mention that she was born with an anaphylactic food allergy which is also an immune response gone haywire? She has also had unexplained fevers averaging 103 since the age of 2 as well.

 

My daughter's "soldiers" don't go to war when she has infection. This would explain the frequent UTI's and strep infections. So, I believe that IVIG is correcting her body's incorrect immune response to both the autoimmune illness and the lack of ability to fight infection from S. Pneumonae.

 

According to our Immunologist-the Pneumococcal titers indicates that she doesn't make antibodies to those specific antigens. We have no way of knowing how many other antigens her body also does not make antibodies too.

 

Sam

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I have no doubt that everyone here is doing everything they can to help their children. My daughter has been ill since she the age 2. So we have had our fair share of struggles. If it was not for my "Faith" my daughter would be on antipsychotic drugs right now and probably facing a struggle similar to what I read about in Against Medical Advice because that is the road we were headed down back in March. I do not believe that God punishes those who do not believe in him. I do believe that because we have found the answers that we have that it is my responsibilty to share--as a human being and mother.

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Okay...I stand corrected about the vaccines....two different ones. I see that.

 

I still don't think there is enough info. out there regarding Prevnar and what should be regarded as normal. It seems the immunologists are all over the board on this. All due respect to your doc, but, we all know, as you stated, some of these experts can be wrong. So who do we believe????? Latimer? Your doc? I don't know...that is what is so crappy about all this.

 

I am sorry your daughter has had so many problems. It does not appear to reflect the general PANDAS syndrome...perhaps she has PANDAS that is "complicated" by her other issues.

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DCMom....Great point about the PEX and the pneumo titers....now why didn't I think of that? :angry:

That would also apply to immune deficiencies...right? If the problem were a deficiency......why would PEX be so effective? PEX removes antibodies. Wow..DCMom..that is a big light bulb moment. And steroids...why are they so effective in PANDAS, too?

 

 

I am a Christian myself, however, also struggled with that statement.

 

Have I EVER said that EVERY child has an underlying immune issue?? PEX not only removes antibodies but it also replaces them with donor IgG's-same as IVIG.

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I'm interested in whatever testing we can have done (within reason) to satisfy my own curiosity as well as hopefully hit on a concrete answer (by this I mean an answer that makes all doctors believe us that something is really wrong.)

 

I still have yet to post Pixie's entire life history with PANDAS and/or whatever else she may have going on, but the pieces of the puzzle feel like they are coming together a lot more for us recently (since learning about PANDAS.)

 

I have had a history of strep and suffering more than most people through things like flu, etc and generally been in poor health for no reason that anyone can find, for my entire life. I struggled with aches and pains with "no apparent cause- just the way you are" according to a rheumatologist, since about the age of 12. I kept sinus infections, yeast infections and UTIs from age 12-20. I was on constant antibiotics through those years. At age 20 I developed severe candidasis and weaned myself off of the abx and made diet changes and never have had chronic infections since.

 

I get severely dehydrated at the drop of a hat. When I was 19, I suddenly could not walk for about 2 weeks and went to doctor after doctor and no one could find the cause and told me it was psychosomatic eventually (I was having such severe knee pain that I would vomit, shake and sweat.) It mysteriously disappeared just like it appeared! Then a bout of hot flashes at age 28 and so much of my hair fell out I was clogging the drain daily, but thyroid tests all came back just fine and I was told that it was most likely depression (I didn't feel depressed!) and was put on Zoloft, which made me feel like I had to shake my head to the side constantly after just a week on it. I was told that this was impossible, that it was all in my head- AGAIN. On and on and on and on. Doctors are constantly treating me like I have no idea what I am feeling in my own body! I KNOW not to trust doctors without doing my own research and that is why I am so certain I also have to walk that same line with my daughter.

 

My mom, last year, was diagnosed with Lupus. I have the exact. same. symptoms. but was told mine was "just fibromyalgia" and that they diagnose any chronic pain and fatigue as fibro if you fail the blood tests for Lupus. We are going to different doctors, but with the same symptoms and getting totally different diagnoses. She is offered meds, I am offered nothing (not that I would take meds anyway, but just saying for comparison's sake...)

 

So there is definitely something genetic going on in my family and there is definitely a possibility that that affects Pixie. I figure, too, if she is going in for bloodwork for Dr K or whatever anyway, why not have them draw more for investigating and testing and TRYING to get more answers? I don't see how that hurts. If it means that we qualify for a numerical code now because of it, that they can write on a piece of paper and it means money for meds or therapy or whatever... I don't care. All I care about is helping her survive, and believe me, with the OCD and the rages and the hallucinations and the fevers... she needs a lot of help to survive right now. :angry:

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dcmom:

 

Since you are seeing Dr. Latimer, I believe, can you ask her about your thoughts that IVIG is a therapy versus a cure. I would really like to know what she thinks since we did IVIG in hopes that it is a cure. I know Dr. K believes it is a cure 80% of the time.... I am hoping that the people who are relapsing on this forum are part of the 20%

 

Anyway, I would like to know what she thinks, but she is not our doctor. So, it may be helpful if anyone who is seeing Dr. Latimer can ask her this question. I know the two doctors disagree about a few things and we all tend to be biased based on which one we are seeing, but it would be interesting to get her view point. I know she favors PEX, but does she also believe IVIG can be a cure??

 

Thanks,

 

Elizabeth

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He believes that these children produce antibodies to strep, but they behave badly and attack the brain cells instead. Anyway, he said that IVIG helps the body produce antibodies that act appropriately and that these children will not need even the antibiotics once their bodies are healed.

 

Elizabeth,

 

I am wondering if your doctor has given you a general idea on how many IVIG treatments it wil take to be considered healed? How often will he need to re-run the immunological tests? Will you revaccinate with pneumovax or prevnar to test the immune response? Do you know if he has successfully treated any PANDAS kids with this protocol? Were their symptom exercerbations with viral issues also resolved with this treatment?

 

Thanks a lot,

Karen

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Hi Karen:

 

I don't know his opinion on revaccination. He thought that the one treatment (per Dr. K's protocol) could maybe "heal" the PANDAS, but that he felt that 6 smaller doses of IVIG could prevent further issues in 5 to 10 years. He mentioned preventing other autoimmune disorders that can happen later in life. He did say that I would probably not need anything after the 6 months. He said that my son had a very "immature" immune system and we needed to maturize (spelling?) his system. This doctor is known as an aggressive doctor, so I do feel nervous about what I am doing. I especially feel nervous because Dr. K said that I did not need to do this and he does have 10 years of experience. I do know that he is currently treating other kids who have PANDAS, but I will ask about his actual history and success rate with previous children. I will see him this Wednesday. He also said that my son was recently attacked by 2 strong viruses, one being the Epstein Barr virus.

 

 

So thank you for the good questions. I will add them to my question list.

 

Elizabeth

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.

PEX not only removes antibodies but it also replaces them with donor IgG's-same as IVIG.

 

Shae's Mom

I need to comment on this - the terms plasma exchange and plasmapheresis are often used interchangeably. I think most on this forum use the abbreviation PEX to stand for either. However, Dr Latimer uses plasmapheresis, not plasma exhange. So those of us who have gone to her for this treatment Did Not get an IVIG infusion as part of the treatment. They took my son's blood out, spun it in a large centrifuge, skimmed off the clear serum with the antibodies, and returned the rest of the blood plus some albumin and protein fluid, back into my son's body. They threw away the antibodies. They did not replace them with donor ones. He will need to build his own over the coming months.

 

So when I refer to PEX, I really mean plasmapheresis and it did not include any sort of IVIG with the treatment. Everything in my son's body is his own - and his quantitative IG workup scores were all solidly in the normal range ( Dr Latimer did not test sub-classes.) (tested prior to the plasmapheresis). So we don't consider him immuno-deficient.

 

We haven't done any pneumo titer testing. Post-pex, I don't know what would show up, if anything. So I'm not trying to enter the debate in this thread. I just didn't want to leave everyone with the impression that the treatment Dr Latimer is doing involves replacement donor immunoglobulin.

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Shaesmom, PMom and dcmom,

I have to add my two cents to all this great conversation. My father is an immunologist and says as long as you have at least ONE s. Pne titers over 2.0 then your body will respond adequately to s. Pne. But if a child has CHRONIC infection over years and no s.pne titer over two then something is definately wrong with their immune system. And Dr. L doesn't necessarily favor PEX over IVIG. She looks at the kids and their history to determine which precedure will help them best. When the immune system is messed up one part may be overreacting which will make other parts underreact to compensate and vis a versa. Therefore when you look at some immune testing you can't tell what is the cause, an overactive immune system or underactive immune system. (If the child has both, like high ana and low IGG,). One thing is for sure though if a child does not produce titers after multiple exposure to a virus, or bacteria it has an immune memory problem which needs treatment.

 

Some autoimmune conditions like vasculitis receive IVIG or PEX, if one is tried and it doesn't show an immediate result the other is then tried and it usually works. Apparently doctors don't know which will work for which patient. Interesting that Swedo found multiple IVIG was preferred for SC over PEX, yet as a one time treatment PEX seemed to be better for PANDAS kids. Yet according to Dr. C it may be a spectrum disorder with the same antibodies. My daughter had one IVIG and I can say it helped but it was no cure. Why does Boston Children not give IVIG anymore to kids?? They use to back in 2003. I heard they said it didn't work. I know a women Rheum in my city who treated infection triggered OCD with great success with IVIG, when she was given some PANDAS kids with multiple tics and high strep titers I know IVIG didn't produce the the same immediate response. Dr. Trifilleti gave IVIG to help eleviate OCD and pulse steroids for tics. I have contacted Dr. Sultans office and several leading DAN's who say they have multiple patients who still have tics after multiple IVIG's. They told me tics can take years to subside. Yet some people have seen help from IVIG with tics. We know that children can have high antibodies that do not get through the BBB and have no symptoms. You need both a leaky BBB and antibodies to have the PANDAS symptoms. IVIG helps the leaky BBB and PEX gets rid of antibodies. The most profound statements recently written on this forum come from two moms after their children had PEX. They say things like cure. You rarely hear that from IVIG. You hear at about 3 to 4 months post 90percent or 85 percent. We do know one thing for sure, infection and viruses cause the BBB to leak allowing antibodies in to cause brain inflammation, if your child has an immune deficency then multiple IVIG's will help reduce illness, therby allowing the brain healing time in between attacks. Any virus can cause the BBB to leak and the Cam Kinase will stay high for years once triggered.

I agree with P. Mom IVIG will help reduce an attack but is not necessarily a cure. PEX seems to help most for a one time treatment. But some have also had relapses on PEX. But EVERYONE who has a child who gets chronic infections should check their immune system. Having chronic illness only worsens the PANDA symptoms, Shaesmom is right for getting the word out. I think we should all use the word "treatment" for IVIG, steroids, PEX and "remission" instead of cure. If we keep saying cure in this forum we may be hurting our cause and potentially deny further treatment to other children. These are words doctors typically use for autoimmune diseases and they produce more realistic expectations.

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