ShaesMom

Hi Nancy, My dd7 stopped eating lunch at school last year when she was in the middle of her worst Pandas episode. She had IVIG this summer so we were hopeful that she would eat this year--guess what--she still won't eat her lunch at school with the exception of a few cookies or crackers. I went and had lunch with her one day to assess the situation and found that she was eating VERY SLOWLY. I have started sending only a sandwich and 1-3 small cookies or chips with her. She still comes home with half her lunch in the sack. Last year her pattern was eating 5 mini pretzels and that was it. This year started with the half dozen cookies/crackers and nothing else. Today I seriously considered sending ONLY the sandwich but then I was concerned that she wouldn't eat anything at all. Pandas comes with an anorexia component to it. We are not sure when her Pandas started but we think it may have been around age 2 when she first started self limiting the foods she would eat. She has done this two additional times since the initial time. She has a severe food allergy so her diet is already extremely restricted. Sam

EAMOM-what kind of symptoms did your kids have with the flu? Shae tested positive for Influenza A back in March. She was the only one in the house who got sick even with my 80 year old Grandmother visiting us. Anyway, I'm wondering now if maybe it wasn't H1N1. She had a high fever for about three days and on the first day complained of not being able to feel her fingers. All of this occurred during her worst Pandas episode but before we knew it was Pandas.

What great foresight to video tape him. I really wish I would have done that at Shae's worst point. Glad to hear the results were on the lower end of the spectrum.

http://www.capitalcentury.com/1976.html Here is an article on the 1976 Swine flu epidemic that never was! Only one person actually died from the flu itself-the vaccine killed many others though. No one in my family will be getting the swine flu vaccine.

Hi Eddie, Sorry your son is going through this. I don't really feel qualified to answer your question because my dd who received her first IVIG back in July has had it two additional times--NOT for her Pandas though. She has an additional immune issue in which she will receive IVIG monthly. If you have the time, you can look through past posts to see how some of the other kids have done post IVIG. Most parents have IVIG Update or something similar in the title so you will be able to pick them out easily. Sam

That's great news Melanie!

BCBS is paying for all of ours after we meet the deductible of course.

If you look on the lab results there should be a long paragraph explaining the results. It starts out "Note: Serotypes designations.....specific antibody levels of approximately 2.0 mcg/ml were protective against invasive pneumococcal disease." My Immuno doc uses the above 2.0 as his range. Anything below 2.0 is a failure. Diana P's Immuno doc feels anything below a 1.0 is considered a failure. My daughter only scored above 2 of the serotypes. Her immuno also did not feel it was necessary to revax her because she had all the necessary Prevnar vaccines during her regular vaccine schedule. Number 26 (6B) is actually a part of the Prevnar vaccine so I would think a high score would be good. My dd scored <0.3 on seven of the serotypes. your Pulmonogist probably had no clue what it meant.

Did she have her Igg subclasses done as well? If she was normal on all her results-I think you are probably correct that it would be hard to build a case with an immunologist. However, he/she may have some additional ideas to offer in regards to how her immune system is working or other tests that could help with a dx.

I emailed Dr K with a couple of questions after we found out Shae had the immune issues (we had done a phone consult with him prior) and he did not answer any of my questions that were directly related to that issue. I'm assuming because it is not his field of expertise. I agree with dcmom-his recommendations are likely related to Pandas only. If your daughter becomes asymptomatic it is likely because all of the Ig's she has received have died off. My dd does not receive monthly IVIG because of her Pandas but because of her immune deficiency disease. We have noticed that her symptoms start to return anywhere from 5-7 days before her next infusion and then disappear the day of the infusion. Here is some info taken directly from the Immune Deficiency Foundation's publication on Immunoglobulin therapy: Unfortunately, the immunoglobulin only provides temporary protection. Most antibodies, whether produced by the patient’s own immune system or given in the form of immunoglobulin, are used up or “metabolized” by the body. Approximately 1/2 of the infused antibodies are metabolized over 3 to 4 weeks, so repeat doses are required at regular intervals. Depending on the route of administration, this may be done by giving small infusions under the skin as often as every 2 or 3 days, or larger intravenous infusions once every 3 or 4 weeks. Since it only replaces the missing end product, but does not correct the defect in antibody production, immunoglobulin replacement is usually necessary for the patient’s whole life. You can access the whole chapter at this link: http://www.primaryimmune.org/publications/...pats/e_ch18.pdf

Wendy, My daughter is getting monthly IVIG based on her failing the pneumo titers test. She has normal Igg subclasses and Igg, Igm & Iga. Sam

I can already see that the link didn't work. The title of the article is "The Vanishing Youth Nutrient" It talks about both Omega 3 & Omega 6.

I normally post on the Pandas forum but the Omega 6 title caught my attention. I just read a really interesting article in the September issue of Prevention on this very subject. Here is the link: http://www.prevention.com/cda/article/the-....basics/0/0/0/1 If the link doesn't work, you can access the article on the magazines website, click on current issue, and then September 2009. It will be interesting to see what other's find. Sam

I have found that MANY doctors feel the same about probiotics with strep strains - that it's just a rumor. Here is my 2 cents: we were prescribed a probiotic with a strep strain in it and my son immediately (within 24 hours) had an awful PANDAS episode. It wasn't until 10 days later that I looked at the bottle and saw that there was a strep strain in it. I stopped it and gave him Oil of Oregano and 3 days later he was better. I have "spoken" with many women online who say they see the same problem with their kids who have PANDAS issues. I would STAY AWAY if I were you :-) Florastor is a brand name for the strain called Saccharomyces Boulardii. There are other brands. S. Boulardii is the best strain to give with antibiotics, b/c the antibiotic won't kill it. Also, if your child begins to develop symptoms of yeast (giggling, spacey, wetting the bed...those are my son's yeast symptoms) a 10 day round of Diflucan helps. This is all per my son's DAN doctor. Stephanie I'm not up on this stuff-what are the strains or names of probiotics that have strep in them? Also, my daughter started having issues with wetting the bed at night and some occasionally some minor accidents during the day. This started about two months ago-she never wet the bed prior to that even during the potty training months. She has been tested for a UTI (negative) and I have talked to my Ped about a yeast infection but she doesn't believe that someone her age can have a yeast infection even if they are on propabx. I want to rule this out as a cause of the bedwetting-what test do I need to ask for?? Sam If she does have a bunch of yeast in her tummy-will it show up on the endoscope??

I have found that MANY doctors feel the same about probiotics with strep strains - that it's just a rumor. Here is my 2 cents: we were prescribed a probiotic with a strep strain in it and my son immediately (within 24 hours) had an awful PANDAS episode. It wasn't until 10 days later that I looked at the bottle and saw that there was a strep strain in it. I stopped it and gave him Oil of Oregano and 3 days later he was better. I have "spoken" with many women online who say they see the same problem with their kids who have PANDAS issues. I would STAY AWAY if I were you :-) Florastor is a brand name for the strain called Saccharomyces Boulardii. There are other brands. S. Boulardii is the best strain to give with antibiotics, b/c the antibiotic won't kill it. Also, if your child begins to develop symptoms of yeast (giggling, spacey, wetting the bed...those are my son's yeast symptoms) a 10 day round of Diflucan helps. This is all per my son's DAN doctor. Stephanie I'm not up on this stuff-what are the strains or names of probiotics that have strep in them? Also, my daughter started having issues with wetting the bed at night and some occasionally some minor accidents during the day. This started about two months ago-she never wet the bed prior to that even during the potty training months. She has been tested for a UTI (negative) and I have talked to my Ped about a yeast infection but she doesn't believe that someone her age can have a yeast infection even if they are on propabx. I want to rule this out as a cause of the bedwetting-what test do I need to ask for?? Sam

Welcome. I thought I remembered reading something on a previous post about Olive Oil extract. this is it http://www.latitudes.org/forums/index.php?showtopic=5201 I give my daughter Ibuprofen every morning right along with her abx. If she seems to be having a bad day, I give her a second dose in the afternoon. the daily dose is because it seems to help keep her on an even keel and helps with the leg pain. The days I skip it I always notice a difference in her mood.

We have only been doing the IVIG for three months. My daughter has been dx'd with an immune deficiency disease in addition to the Pandas. The plan right now is monthly IVIG for two years and then redo the blood work. However, redoing the blood work likely means vaccinating her with Pneumovax which at this time I am opposed to. Monthly IVIG is the standard treatment for her immune disease so even if we do PEX for the PANDAS we would still need to continue the IVIG. Sam

Oh, please understand that I am no way encouraging you to do the vaccine. My daughter was able to get insurance approval for IVIG based on her titer results but she was NOT vaccinated with the Pneumovax. She received Prevnar from age 2-3 and her immuno did not feel she needed to be revaxed (she's now 7). So, I'm wondering if you can find a doctor to dx him with CVID based on those original results and try for insurance approval.

Sorry, I don't have any good advice. My son came home today and told me that a classmate who was coughing on him all day yesterday and complaining of a sore throat wasn't at school today. So, I'm guessing strep or the flu has hit his class and it will only be a matter of days before he brings it home to his sister. Unfortunately, we are all in the same sinking ship together.

Hi Nancy, I can't help with the confessions but I can tell you that my daughter also has an increase in her symptoms the week before she is due for her IVIG. The Igg's naturaly die off sometime during that last 3-4 week period which is why we likely see an increase in symptoms. Another thing to try besides IVIG every three weeks might be an increase in her dosage. Has your doctor ever checked her trough levels? It is my understanding that the results would indicate whether or not you indeed do need to increase the dosage or change the time frame. Sam

Jennifer, I believe you said in a previous post that your child failed the Pneumococcal titers vaccine test but your doctor wanted to revax and test again (?). If you can get your doctor to use the code for CVID based on those titers results you should be able to get insurance to pay for the IVIG. 279.06 is the code. I believe others have had luck also using a code that has to do with encephalitis. I'm sure someone will share those. In fact,I think it was FallingApart who had a post on it awhile back-about five weeks ago.

Everyone in the family but my Pandas dd with get the flu shot. She has always had one in the past but I'm not comfortable taking a chance that it may or may not effect the Pandas. Dr. K recommends no vaccinations including the flu shot.

Susan, Congratulations! This is great news that you were able to get in so quickly! How is she doing today? Did she go to school? Sam

Wendy-EAMOM brings up a good point about the secondary infections. Since your son failed the pneumococcal titers test you already know he is more prone to secondary infections so if it were me I would be extra cautious if he does get sick. I know the plan at my house is to get anyone tested who may have the flu and immediately start my dd on one of the antiflu meds because of her immune issues. I'm also thinking that we may be wearing masks if and when it hits my house as an additional safety precaution. Seems kind of silly but I know my 9 year old is not very good about covering his mouth when he coughs no matter how often we remind him.