ShaesMom

Our Immuno also wants us to get both flu shots for our dd. I have decided that at this point we are all skipping the H1N1 flu shot and everyone in the family except Pandas daughter will get the regular flu shot. I don't know if this is the right decision or not but I'm sticking with the decision. Just curious-Why is she recommending Prevnar over Pneumovax? Hope your other son gets better quickly and everyone else in the family stays healthy. Sam

Please keep us posted on what you find out about this kids after six months of IVIG. Our Immune suggested we go for two years before retesting.

I never remember having strep as a child. In fact, my first strep infection was when my son brought it home from preschool. I ended up having strep from early December until the first of March. Every test came back positive. I literally layed on the couch for three months because I felt so horrible. I ate nothing but ice cream and ended up gaining 10 pounds that winter. My Pandas dd still remembers that year-she often makes comments about the time I used to sleep on the couch every day when my son was at school and she would watch cartoons. Since that year I have had just as many strep infections as my children and it usually hits me worse than either of them. Somehow my dh always seems to avoid it. A year and half ago I was dx'd with Fibromyalgia. My symptoms started in January 08-I literally woke up on January 1st and knew something was wrong because I didn't feel the same (no I did not have a hangover ). My dd's last known strep infection was in Nov of 07 with mild Pandas symptoms starting in mid December. I have often wondered it there is a connection between the two.

It is great to hear that she is improving! Keep us posted! Sam

Eileen, Here is a link to a "brief" explanation of the immune system and how it works. It relates to eosinophilic disease but it should answer your questions about B cells. I'll look and see what I have on the strep pneumo titers and get back with you. http://www.cincinnatichildrens.org/svc/alp...mune-system.htm Sam

Our labwork came back with the name Streptococcus Pneumonae IGG instead of Pneumococcal Titers. The lab work would show a list of 14 different serotypes with a numerical value for each. It does not give a reference range EXCEPT in the long paragraph that follows.

Yes, I see the difference now. Thank you for pointing that out. In Plasma exchange they add the donor IgG's to the solution but not in Plasmaphersis.

My daughter also has a CVID dx and Pandas. She also has a history of recurrent illness since the age of 2. She has been on monthly IVIG since July. I agree with everything you've said BUT that doesn't mean I believe this stands true for every child with Pandas. I do believe that my dd's immune system problems contributed to her getting Pandas.

I think it is time for us to agree that we disagree and move on. Does that sound okay with you?

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.

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.

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

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!

Thank you for sharing that.

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.

Blood work should be done for the following: IgG, IgM & IgA IgG subclasses 1-4 Pneumococcal Titers Test Diptheria Titers Tetanus Titers These tests just scratch the surface. For a more in depth list of the tests visit this site: www.jmfworld.com

I'm sorry PMom-I have to disagree with you. 1) The experts "believe" that strep A & streptococcus pneumo are completely different BUT the experts also believe that PANDAS doesn't exist. IMO-they could be wrong. 2) Dr Cunningham indicated to Diana when she visited her that she believes Pandas may be caused by strep pneumo in addition to strep A. I believe a summary of her visit is posted under another thread. 3) Does anyone know----ASO titers--does this blood work ONLY show a recent exposure to strep A or does it show exposure to any type of strep? I will be asking my immuno about it on the 14th.

I just wanted to add: When I went in to talk with our allergist about this I had no idea what an immune deficiency was nor did I know that IVIG was the recommended treatment. It was all coincidence. So in answer to your question if we did the immune workup so that insurance would pay for IVIG the answer is NO--that turned out to be a BONUS!!

Sam, do you have anything in writing that I can take my immunologist about what SHOULD constitute a failed titer and why revaccinating should not be an option for these kids? Or maybe we can start a list of immunologists who are treating based on these results to offer as resources for our doctors. I think there are only a couple that we no of so far right? Susan Sorry Susan the only thing I would have is the actual blood work results which has the paragraph below the results stating something like anything above 2 is considered an adequate response. Unfortunately, it sounds like each Doc has their own interpretation of the results.

Our Immuno told us we would do IVIG for two years and then retest.

I believe IVIG is TYPICALLY done by Immunologists but that does not mean others physician's can not write the orders. Our dd receives her IVIG at her allergy doctor's office. Many of the illnesses "approved" for IVIG are either autoimmune illnesses or primary immune illnesses. Many hospitals also have an in house infusion center where IVIG is completed. I would start with having the Cunningham blood word completed and then have your Ped run a complete Immunological Panel as well. The immuno panel should include blood work for IgG, IgG subclasses, IgM, IgA and the Pneumococcal, Diptheria & Tetanus Titers. Many of these kids are failing some portion of the Immunological panel which may mean a diagnose of a Primary Immune Deficiency Disease. With a PIDD dx insurance would likely cover the IVIG.

My daughter was tested for the immune issues back in June based on one of those "mommy gut instincts". Her results came back showing that she had normal levels of the immunoglobulins (antibodies is another name) of Igg, Igm, Iga, and Igg subclasses. This means that her body makes normal levels of the antibodies needed to fight infection. Our allergy doctor told us that even though her body makes a normal level it does not necessarily mean that these antibodies actually work properly. We did another blood test on her (one amoung many) called the Pneumococcal Titers Test. This test shows how her body responds to infections caused by Streptococcus Pneumonae (Group A strep is not in this group). The results came back showing that she failed 12 of the 14 serotypes which means that her antibodies do not go to work to fight these types of infection. Because of these results she was dx'd with a Primary Immune Deficiency Disease called Selective Antibody Deficiency (it is often lumped with another PIDD called Common Variable Immune Deficiency-CVID). Since her diagnosis-several other families have also done the Immunological blood work. I believe most of the children have come back having a deficiency in one of the subclasses or other Ig's and almost ALL of them have failed the Pneumococcal Titer test. Our Immuno recommended monthly IVIG for our daughter based on her blood results. Because CVID is a recognized disease for both insurance purposes and throughout the medical community her IVIG is paid for by insurance. There are a few other families on the board who have had the doctor's recommend monthly IVIG on a trial basis. Rather than going into a lot of detail-I will look through the past posts and PM the links to you. Sam

Hi Faith, Our Ped started the blood work by running Igg, Igm, Iga, and the Igg subclasses. We then had our allergy doctor order the additional blood work for the Pneumococcal Titers, Diptheria & Tetanus Titers, and some additional ones as well. We then took all of those results to the Immunologist who practices in our allergy doc's office. I think anyone can order the blood work but I'm assuming most Ped's might be know what the results mean (ours didn't).