ShaesMom

If you haven't already done so, I would get copies of all her medical records and start a three binder with different catagories. After I started a binder and found the time to look over her medical records we really began to see just how sick she had been her whole life. I take this binder with me to every doctor's visit-they laugh at me but they also know I've been thorough. Having the complete picture there in front you is eye opening.

Wendy--I'm so sorry. I know how scared you must be feeling right now. My daughter tested positive for Flu A back in March while we were still doing the testing for Pandas. It only lasted about 3 days but since she was already in the middle of a Pandas episode I can't really say if it made her symptoms worse. I'll keep you in my thoughts. Sam

I agree with every else. Try for a longer dose of the abx-30 days is good. I would also get a copy of that blood work ASAP and followup with an Immunologist to see if you can get the IVIG started sooner rather than later. If your daughter has an underlying immune issue she is going to continue to get sick.

Shaesmom, I'm not clear on this - Did 100 kids go though the immuno. bloodwork and 15 failed? Or out of 100 PANDAS kids that you are tracking, you know of 15 that have taken the test and failed? I took my dd for the testing last Friday. Still waiting for results. Debbie According to Diana, there are approximately 100 kids who have Pandas (I believe the number was slightly higher than 100). We know of approximately 15 who have had the blood work completed and unless something has changed since the last time I talked with her about it-all 15 have had the results come back showing deficiencies in either the IgG subclasses and/or Pneumococcal titers. Hopefully, she will correct me if I am wrong on these results. Unfortunately, it appears that not all Immunologists are on the same page as how to interpret and treat for these results.

Mommd-That is great news! Please keep us posted on the how the Immunological workup goes.

Oops-let's try this again. You can learn more about PIDD's at the Primary Immune Deficiency Foundation's website. Here is a link to one of there publications. I think it is important to read chapter's 1, 2 & 10. http://www.primaryimmune.org/publications/...s/book_pats.htm Another good website is the Jeffrey Modell Foundation. www.jmfworld.com The foundation was started by a family who lost their son to a PIDD. There isn't a lot of information available on Specific or Selective Antibody Deficiency. It usually is lumped with CVID. But here is what I have found so far: http://www.uptodate.com/patients/content/t...~/3O3rTLTTn__c/ http://pedsinreview.aappublications.org/cg...tract/21/10/358 If you like to read-here is a link to a bunch of other articles but I think you have to pay for most of them: http://www.jacionline.org/search/quick?res...dy+deficiencies Another site where I learned some good info was actually the Prevnar vaccine site. Prevnar has 7 of serotypes that fight against streptococcus and is given to children under the age of 5. Pneumovax has I believe 23 serotypes and is given to anyone over the age of 5-most commonly adults. It is actually readily available this time of year at most pharmacies. Try this link: http://www.prevnar.com/pneumo/pneumo_iq.aspx If it doesn't work go to Prevnar.com and click on the dancing Pneumo guy on the left hand side. You should see an animated video. For anyone interested: the serotypes in Prevnar are: 4; 6B;9V;14;18C;19F Hope this helps some! Sam

I believe at last count Diana and I have around 15 who have failed out of over 100 kids who have Pandas. Hopefully, as more parents request the immunological bloodwork we will see more of a pattern and be able to include it as a diagnostic tool for diagnosis.

Hi Kg5132 I may be wrong but I believe my daughter was the first one on this forum to fail the titers test and receive a dx of a Primary Immune Deficiency Disease and therefore start receiving the monthly IVIG. She also failed 12 of the 14. I think there are a couple of other kids who failed before her but their immuno doctors were unconcerned about the results. As far as this being fairly common with Pandas kid I think it is too soon to say. We are discovering that more and more of them seem to have some underlying immune issue. I believe the count is now up to somewhere around 15 who have the blood work done and who have failed. It is very confusing to try and wrap your head around the different concepts. The low IgG levels means your child makes antibodies but not enough. The failed pneumococcal titers test means that your child's immune system does not use the antibodies that he is making and then the Pandas side of it means that the antibodies he does make are attacking his brain. Our all his immune system is just messed up. The medical community will tell you that the streptococcus pneumonae and strep A are different strains and therefore the results of the Pneumococcal titers test really aren't conclusive as to how your child will respond to strep A. Obviously, what you do know is that your child's body is not fighting infection properly-whether it be strep A or another infection. I personally say baloney to the part that they are not in anyway the germ. Your child may have received a dx of a Specific Antibody Deficiency (SAD) or Common Variable Immune Deficieny (CVID). Both of these fall under the spectrum of Primary Immune Deficiency Diseases (PIDD). There are approx. 150 different PIDD's. The good news is that a dx of SAD is one of the lease invasive of the PIDD's. The other good news is that it is a recognized disease for insurance purposes and that IVIG is the standard treatment plan. The bad news is that IVIG may be required for life. Since your child is 15-his immune system has already stopped "growing" Average age for a mature immune system is around 5. It is common practice for Immunologist's to revaccinate with the Pneumovax vaccine and then retest the titers again in 3-4 weeks. Please be aware that this vaccine does have various strains of streptococcus in it-but not Strep A from what the doctor's will tell you. Our doctor did not feel it was necessary to revax our daughter at this time because she had a full course of Prevnar during her regular vaccine schedule. If he had wanted to, I probably would not let him do it because of the PANDAS. I have to pick my kids from school now but I'll post some links for you when I return. Sam

You need to have these tests done before IVIG because the IVIG will effect the outcomes.

Manda, Have you done the IGG subclasses and Pneumococcal titers test? These relate to the immune system. You can call the Immune Deficiency Foundation and ask them if they could recommend someone in your area who specializes in the Immunology side rather than allergies. 800-296-4433. You can also go to this website and search for someone in your area: wwwjmfworld.com Here is a link to the tests recommended by the Jeffrey Modell Foundation (Immune tests) I would encourage you to have the first two catagories done. http://www.info4pi.org/aboutPI/index.cfm?s...ntent=algorithm here is a link to an article on Specific Antibody Deficiency. This happens when all the Ig & Igg subclasses are normal but the person does not mount a response to the specific titers (Pneumococcal for example) http://www.uptodate.com/patients/content/t...~/3O3rTLTTn__c/

I believe the different strains not only have the same shape but also a similar bacteria. I'm sure Buster can give us a better understanding of how they all get the streptococcus name. http://www.biology-online.org/dictionary/Streptococcus http://www.babylon.com/definition/Streptococcus/English

Have you tried the Good Belly brand of drinks. They are really Good!!

Dr K is great but you need to find an Immunologist and have that blood work done. I emailed you the name of Pediatric Immunologist who is associated with the Jeffrey Modell Foundation which was established by a set of parents who lost their son to an immune deficiency disease. CALL HIM! If she is responding to the Ig's dieing off and her body's inability to fight the infection on her own then it would seem apparent that she has an underlying immune issue. Meg's Mom-we seem to be on the same page in regards to the immunological panel. I'm hoping you'll chime in and reiterate my thoughts about the blood work panel. Sam

This is the same article that I sent a link to from the Immune Deficiency Foundation's website.

K-My heart goes out to you A. I hope that you are off to a better start this morning and that your husband will be there shortly to help you go through this. Please know that even though you are alone in that hospital you are not by yourself. You are in everyone's thoughts and prayers today as is your daughter. God Bless Sam

You have to wait about three months before you can do the immunological blood work after having IVIG

ShaesMom, Thanks for this information! Just to clarify, did you have her titers tested before and after giving her the Pneumovax? When did you give have this done? After being diagnosed for PANDAS? Did she have any negative reaction to the vaccine? My son is fully vaxed with Prevnar, and they've checked certain pneumococcal titers, but they felt the before and after test with Pneumovax might give more info (and I know if he doesn't show enough of a response, IVIG would probably be recommended and covered by insurance). Depending on how our discussion with Dr. K goes, I may be interested in calling or seeing your immunologist. Apparently, there aren't any immunologists in the SF Bay Area who are familiar (and/or willing to work) with PANDAS (someone please correct me if I'm wrong on this). As it turns out, he's based in my home town, Omaha, Nebraska, so it wouldn't be too hard for us to go out there and schedule an appointment during the visit. This would probably be easier for him that meeting in L.A., and we are long overdue for a visit. Thanks! Jennifer Wow-we live in Lincoln. No, she did not receive the Pneumovax vaccine and Dr Koboyashi did not feel we needed to give it to her at this time since she had the four Prevnar vaccines. I honestly would not have let him give it to her. We received insurance approval without any hassles or requests to do the Pneumovax as well. She had her bloodwork done in June and started IVIG in July. It is my understanding that it is common practice to test the titers before and after the Pneumovax but I wonder if this is because most of the people with PIDD's are adults who have never been vaccinated. Prevnar came out in 2000 so most of our kids have been vaccinated. I also wonder if this is why Koboyashi didn't feel she needed it again. We are extremely thankful that she is receiving IVIG monthly and feel that she would not have improved much with only the one dose. She has a history of illness prior to and including the strep infections.

My daughter had normal Ig's and Igg subclass results. She failed the Pneumococcal titers vaccine test-she only made antibodies to two of the 14 serotypes. Because she was vaccinated with Prevnar four times between the ages of 2-3 her Immunologist felt she did not need to be revaccinated at this time and started her on monthly IVIG. Our Immunologist is a Clinical Professor at the UCLA School of Medicine and will be there September 23-29 for the Siegel lectures and LA Allergy Society meetings. It also looks like he will be doing some teaching. Get a hold of him somehow and see if he can help find an Immunologist who will test your son's titers without redoing the vaccine and treat. Our Immunologist does not have great bedside manner but he is suppose to be one of the best in the country and is a big wig in with Immune Deficiency Foundation. Roger H. Kobayashi, MD http://allergynebraska.com/index.php?title...3d5d6b601ff9d7a Here is a link to the subclass info from the Immune Deficiency Foundation's website. http://www.primaryimmune.org/publications/...pats/e_ch10.pdf

No, just the usual toilet/bathroom cleaning. If they are not touching their privates to the seat, would it really transmit? Maybe I'm being naive about how much contact there is. Susan I think my daughter pulls her underwear down, sits and then kidda scoots back to actually go. Maybe it wouldn't hurt to use a clorex wipe after they go on the seat itself.

Trust me, I've been wondering what the heck is going on and how they are getting it. I finally just assumed that they have it lurking in their bodies and we aren't getting it killed off. But that said, I'm sure we could be better about hand washing, etc. I try to make sure they wash their hands frequently and of couse especially after using the bathroom but maybe like you say, something far fetched could be happening.... I just don't know! dd7 was getting it one right after the other. She has not had it again since doing the longer round of zith. This year when we were having trouble with it, they were both getting it, starting in December 08. We normally don't use hot water for laundry washing. Maybe this is a good idea to start to include underwear in with sheets and wash with hot water.... Susan Do you wash off the stool after each one is finished?

So, you don't think you have seen any changes for the better?

Susan, You may have already shared this with but-has your daughter had the immunological workup yet and if so what did the test results show? Have you found any of the forums directed at the immune deficiencies? If not, PM me and I can send you some good forum sites. Sam

Welcome to our little club Jennifer--so sorry you needed to join us! I talk to Diana often by phone or email. You are very lucky to have such a great source of support and info so close. I hope she has talked with you about having a complete immunological blood work panel done on your son especially since he has had pneumonia 6 times. I've included a link that gives a brief description of primary immune deficiencies. http://www.primaryimmune.org/about_pi/about_pi.htm

Hi, in no way derailing! I think your questions and thoughts are great! I am always looking for new ideas about strep B or V strep A since we deal with both here. I'm pretty sure I never got tested for Strep B during my pregnancies since they were emergency c-cections 7 weeks early and then 4 weeks early. I guess I could have had it all along.....but since my first pregnancy was suspect for an early birth, they may have tested me early. I just can't remember now. My doc did recently test me for both A and B and A was negative. Susan I'm not sure of the exact timing, but I do believe that we are tested early in our pregnancies for Strep. I think during the first trimester but I may be wrong.