ShaesMom

We started with PenVK and she was about 70-75% back to herself. We switched to Erythromycin and we saw greater improvements all around.

My dd7 has exacerbations whenever she is around someone else who is sick and it doesn't have to be with a strep infection. I had bronchitis in June and she had severe Pandas symptoms for three days while I was sick. Her brother had strep two weeks ago and she was fine when she was not around him but anytime she was near him-within 15 minutes she would start having anger issues that would last the rest of the day. I'm not kidding--she spent the entire day with me and was happy, laughing, having a great time and then brother came home around 5 pm and she went down the tube immediately. Last weekend she was playing with all the neighbor kids and kept having some anger issues & emotional meltdowns. I was ready to go outside and ask if anyone had a sore throat but never did. On the following Monday, one of the little boys was absent from school for three days. She never picked up any of these infections.

Here's an excerpt from part of that article: As many as 10 percent of children with OCD may actually have PANDAS, says Paul Grant, M.D., a child psychiatrist in the institute’s pediatrics and developmental neuroscience branch. But not everyone is convinced that strep is responsible for these kids’ compulsive behaviors. Because strep is so common in children, it’s tough to prove that it’s related to OCD and Tourette’s, says Stanford Shulman, M.D., head of infectious disease at Children’s Memorial Hospital in Chicago. And, he adds, studies haven’t shown that taking antibiotics long-term reduces compulsive behaviors any more than swallowing a placebo. “There’s an awful lot of emotion involved in this controversy and debate,” Shulman says. “It is very upsetting and in the worse cases, a disruptive illness. But in medicine, before we conclude A causes B, there needs to be scientific evidence. People have really tried and it’s still lacking.” Grant says that could change once scientists definitively identify a PANDAS antibody and find a blood test for it. “Until a test is readily available, we won’t have enough cases to say this is unequivocally true,” he says. I think everyone on this board needs to send Mr. Grant an email telling him about their child and experience with Pandas. I'm getting sick of hearing that there isn't enough evidence out there to justify Pandas as a real dx. MY CHILD IS ENOUGH EVIDENCE-as is everyone else's on this board. We need to start flooding email boxes so they no longer have an excuse to pretend that we do not exist! I'm sending Mr. Grant an email today and I'm asking you to do the same: PaulGrant@mail.nih.gov

What causes Guillain-Barre syndrome?: No one knows exactly what causes Guillain-Barre syndrome or why some people get it and other do not. Most people who get Guillain-Barre syndrome do so after having a bacterial or viral infection. In some cases, it has been connected to certain immunizations, such as the flu vaccine, and can even occur spontaneously.

I'm confused-are you thinking the Parent has Pandas or the child with the TS dx? Has this person recently had a flu shot which can cause Guillain Barre? My dd has had severe knee and leg pain which started last spring and has continued for the last 18 months. It started shortly after a strep infection and onset of Pandas symptoms that were controlled with abx. She has since been dx with an immune deficiency and joint pain is common with immune deficiencies so it is hard to say if it was caused by the Pandas or not.

Based on what you said above--I would guess that this is likely not his first Pandas episode. Ear Infections can be caused by streptococcus pneumonae. My guess is this last go around that the amox probably decreased some of the infection but obviously did not kill it. I would think with him being on Amox that often that he has developed a resistance to it. If you've read SFMom's post you'll see that Dr. Cunningham is thinking that Pandas may be caused by other forms of strep including the kind that can cause the ear infections. Amoxicillin is a form of penicillin and there is research showing that certain strains of strep are becoming resistant it. IMO-try a different abx asap.

Michele- Those titers that you are talking about being elevated are NOT the same thing as having the Immunological work up done that Elizabeth is talking about. She is referring to having his IGG, IGA, IGM, IGG subclasses, Pneumonococcal titers, Diptheria & tetanus titers done.

I'm not sure. I do know STREP PNEUMOCOCCAL ANTIBODY TITER tests 14 serotypes and any response less than 1.5/2.0 means they don't produce the antibodies to fight off the Pneumonia. Did you ever get any clarity from Dr. K on the test results? -Wendy Yes-that is something completely different than the Streptococcus Pneumonae titers test. Mycoplasma pneumonia is a type of atypical pneumonia. It is caused by the bacteria M. pneumoniae. This type of pneumonia usually affects people younger than 40. Various studies suggest that it makes up 15-50% of all pneumonia cases in adults and an even more in school-aged children. Wendy-Do you know if the ASO titers relate only to Group A strep or does it show an increase for any type of strep??

In order for her to "pass" the strep pneumonae/pneumococcal titers test-she has to make a response to the various serotypes. So, if you see numbers like <0.3 it means that she did not make a response to that titer. You are looking for numbers above 2 to show that she made the response.

Here's a link to an article that talks about the different abx and there success rate with strep. http://www.thechildrenshospital.org/pdf/Co...-19-07COLOR.pdf

So, Dr. C doesn't necessarily think that Strep A or Strep throat is the only bug that can cause Pandas-correct? If she is thinking more along the lines of Strep Pneumonae does she also think that many of these kids do indeed have an immune deficiency that is causing their lack of reaction to the strep pneumonae (failed antibody response)?

Happy Birthday to Josh and job well done to you Vickie! Hope this next year is fabulous!

Is this your son's first episode? If not and you have repeatedly used amox it may no longer be effective. this seemed to be the case with our daughter. She had repeatedly been on Septra for her UTI's--it always seemed to nip the behavior in the bud. Then this last spring during her most recent episode-her body just laughed at it and she continued to get worse until we switched abx. Try switching to something stronger.

I believe there is at least one other child on this forum who has a doctor that is looking into the Lupus dx-I'll let that Mom give you more info. Were you ever able to track down her blood work from before IVIG? If so, have you done the testing yet? Overall how is she doing? Are you seeing any improvements? Hope all is well and that you are hanging in there. Sam

I know there are parents on this forum who have seen amazing results for their kids from a single round of IVIG, especially if their children were under the age of 10. For kids over age 10, it seems to be less predictable. Right now, we're wondering if our son really needs monthly IVIG infusions. Unfortunately, our insurance won't cover that right now, and we can't afford to pay in full anymore./quote] WorriedDad, It so heartbreaking that your son continues to struggle. I'm wondering if you have done the immunological workup to see if he has an underlying immune issue? If it is found that he has one, it would increase the likelyhood that insurance would pay for the IVIG. My heart just breaks for you and your family. Sam

I'm guessing most of us are in the same boat as you Stephanie. It is a lot of stress and worrying and I think it would take its toll on even the best of marriages.

How scary is this--some guy won an award in 2002 for blowing the whistle on the Prevnar manufacturer for not following FDA standards. Here is his speech: http://www.whale.to/a/prevnar4.html Here's another interesting article about Prevnar http://www.pharmalot.com/2007/09/wyeths-pr...cause-superbug/

I'll spend some time this weekend trying to find the report I saw a few months back.

I think the plan is to try to get it done locally. I've never taken my daughter on an airplane, but I would guess that would be pretty near impossible w/o anesthesia. And it'd be at least a 2 day drive to try to get there by car. Right now, her doctor is trying to collect evidence to present to a specialist (immuno or rheumy) to get them to order it. I feel so blessed in having this doctor, and this forum. You all lead me to this with info on Cunningham (another blessing) and Latimer (another blessing). We knew this was PANDAS 4 years ago, but the only info her doctor had on it was the NIH site (wish they'd link to updated information) which basically says to treat psychiatric symptoms psychiatrically and save IVIG and PEX for severe cases....but doctors who don't see this much don't know how severe "severe" is. Her doctor tried to enlist the help of an immunologist and rheumy in the past...but with nothing else to go on, we got nothing! Erica, yes, I think Allie's doctor is such an angel! I know it takes a lot of courage for him take this path for us, God bless him! It shouldn't be that way, but I think he's risking other doctors thinking he's crazy for entertaining these "ideas" of mine. I would hate to see his career damaged by this...that would be a real injustice. I'm feeling less conflicted over things today and more celebratory! YIPEEEE!!!!! If you have to drive--you can spend the night at my house-l live in Nebraska.

[ Ok, so if so (and wouldn't it be nice to know) then maybe re-vaxing make sense and then testing again to see how long it holds. This is sureal conversation. Anyone know an Infectious Disease specialist? Do you really want to revax her with streptococcus?? Let's look at the history of Primary Immune Deficiency's. Many people are in their 30's & 40's when they are diagnosed. They have never received a vaccine for streptococcus pneumonae--have any of you ever had the Pneumovax vaccine-I haven't. So the first thing the doctor is going to do if they fail the Pneumococcal titers test during the blood work is give them the vaccine and retest three weeks later. If they now make titers--it is assumed that the immunoglobulins will fight those infections. If they fail--possible dx of CVID. Our children are among the first generation who have been given a vaccine for the streptococcus pneumonae during the first years of their life. Many Immunologists may still have the old school thinking of vax and retest. Is it really necessary for those kids who have already been vaxed--four times?????

Just to clarify what Wendy has said above: The Pneumococcal Titers test that so many of the kids are failing is for Streptococcus Pneumonae which is what Prevnar and Pneumovax vaccinate against. Visit the Prevnar website and click on the dancing Pneumo guy--you will get a great explanation of what exactly Prevnar is vaccinating against. Sam THANKS SAM... you are right, it is 'STREPTOCOCCUS PNEUMONAE' that I hope to have my son tested for and potentially explains my sons low ASO Titers of 244 and negative Anti-DNase-B Titers but PANDAS positive. AND maybe why some kids don't show signs of strep or test positive? To me it would make perfect sense that if our kids are failing the streptococcus pneumonae test because their bodies CAN'T fight off those strains that it is likely their bodies also cannot fight off strep A.

My dd had normal levels of all IG's and only failed the pneumococcal titers and she now has the dx of an immune deficiency and receives monthly IVIG based on this dx. I have "spoken" with others on the PID forums who also have normal IG's and failed the titers test that also have the dx of an immune deficiency. What is key to remember here is that normal IG numbers mean ONLY that the children's body makes what is considered a normal number of immunoglobulins. The big question is do those IG's actually DO the work they were made for?? The pneumococcal titers blood work demonstrates whether or not the immunoglobulins actually go to work or if they are lazy. It goes back to my analogy in another thread about the dog and the thief. Fail the pneumococcal titers test and it means your IG's are broken-worthless-don't do a damn thing-total losers. Make sense? And yes, some doctors aren't as proactive about the titers as some are.

How did you find the lot numbers??

I'm confused-did she already run the pneumococcal titers and other tests or do those still need to be done? I'd be glad to help you interpret them. Sam

Just to clarify what Wendy has said above: The Pneumococcal Titers test that so many of the kids are failing is for Streptococcus Pneumonae which is what Prevnar and Pneumovax vaccinate against. Visit the Prevnar website and click on the dancing Pneumo guy--you will get a great explanation of what exactly Prevnar is vaccinating against. Sam