PANDASmcnuggetsw/fry/coke

I'm confused...I thought this WAS the Cunningham study? PANDAS McNuggets w/fry/coke The Cunningham test, in addition to measuring CamKII activity levels, also tests for 4 antineuronal antibodies. Thanks Peggy! There are so many rocket scientists here! (Not me:-)

Are you saying they are yellowish or something else like darker? Thanks, PANDAS McNuggets w/fry/coke

I'm confused...I thought this WAS the Cunningham study? PANDAS McNuggets w/fry/coke

If your child tests positive for lymes, are you still concerned about PANDAS? Or does the lyme explain what was going on in the first place with your child? If the symptoms can be so similar, how does one know if there is PANDAS in addition to lymes or just lymes? Sorry of this is a lame question, but I was thinking about this alot today!:-) PANDAS McNuggets w/fry/coke

We are doing the IGENEX test in a few days after giving a chance for the abx to clear. DD 12 already tested negative for the generic test, but I do not trust that. Her symptoms are too similar to lymes. Lots of joint pain, wierd warm feelings in different places on her back and some chest pain among lots of other things. PANDAS McNuggets w/fry/coke

Thanks Elizabeth for adressing this! My daughter also has/had mycoplasma infection, so all of this info just blows me away. I cannot believe how well versed so many of the parents here on the forum are on the various science topics applicable to PANDAS. My heart goes out to those families that don't have access to this group or other helpful sources of information to help their dear children. We just got back from the blood draw for the Cunningham test and my prayer is that besides helping my daughter, it can help future generations of children from all of this suffering. PANDAS McNuggets w/fry/coke

Thanks Philamom~ I guess that is the scenario we are trying to avoid...going back for more testing. We are also doing the Cunningham test today, so I was hoping to test for lyme at the same time. But I guess it makes sense to wait on the lyme for the abx to clear and do the more complete testing, so we get the complete lyme story if there is one. Does anyone know if lyme can be lying dormant and then get triggered or woken up by a vaccine? Thanks, PANDAS McNuggets w/fry/coke

Wendy, Do you think you got a false negative because of the ABX or did someone test positive? I really am suspecting lyme b/c of my daughter's symptoms and hate to wait another 14 days (4 to finish the abx and 10 days to clear it out of her system). Does Igenex interprest the results? How long do the results take? Thanks! PANDAS McNuggets w/fry/coke sorry if this shows up twice. I posted earlier and did not see it! :-)

Today we are planning on doing the lyme test and although Igenex reccomends the complete lyme panel (6050) it seems like some here do the basic lyme panel (4090). On the phone, Igenex said for the complete test you must be off abx for 10 days and it is ok to be on them for the basic panel. What is the benefit of doing the Complete over the Basic panel and thus having to go off ABX? Thank you!! PANDAS McNuggests w/fry/coke

Mary, Dr K thinks our daughter's autoimmmune issues were lying dormant for many years and that a Hep A vaccine in preparation for our adopted sons coming home from Ethiopia, triggered the severe exacerbation. He too advised no more vaccines. Now that I have laid out all of the dates, I see how our lives have been dramatically changed by this choice to get the Hep A vaccine. We home educate, so don't have to mck with exemptions thankfully. PANDAS McNuggetsw/fry/coke

THANKS everyone... excellent advice!!!! You are all wonderful. :-) PANDASMcNuggets w/fry/coke

Hi friends, Today we saw an allergist/immunologist who was willing to listen and learn and actually help us in getting to the bottom of what troubles our daughter. He signed off on the Igenex lymes testing, gave me an rx for zith and said he could do IVIG if we need to get that far (AFTER he reads up on all of the PANDAS research and IVIG protocol). He also said he would chat with the close-minded pediatrician about being more open minded about the possibility of PANDAS. So a pretty good day! Here's my question: he said we should get her some neuro psych testing to get an OCD diagnosis so that will help get IVIG covered by insurance if we get that far. Do you all do this? Is it neccesary? I hate to get that label put on her unless it really is neccesary. Also, Dr k has already diagnosed her with PANDAS via phone. Do we need more? Thanks so much for listening! PANDAS McNuggets w/fry/coke

"No steroids if you have not properly ruled out lyme! Best to all." Momofgirls, Do you know what happens if one does the steriod and unknowingly has lyme? We are just about to do the Igenex (got a negative IFA lymes test so far), but my daughter was absolutley gray in her face with dark circles ONLY WHEN she was on the sterood for those 5 days. It was weird. Thanks, PANDAS McNugetts w/fry/coke

Hi friends, We have an dx of PANDAS and Dr K is reccomending IVIG after the prednisone burst. In the meantime, we saw a local pediatrician, who is a total skeptic about PANDAS. He ran some tests and is sending us to an allergist/immunologist and I'm not sure why. Her immunolgy results are normal so far. She shows a past or present mycoplasma infection and is still has phelgm intermittingly. Maybe doc thinks this is all allergies???? What should I discuss with this new doctor? I do see that he does IVIG, but I'm willing to bet he has zero experience with PANDAS. I just feel really reluctant sharing our daughter's story with another doctor who may not be so helpful. We have the paperwork for the IGENEX lyme testing and want to do that. It looks like a doctor has to order it. I guess I could ask him, right? Any input appreciated! PANDAS McNuggets w/fry/coke

Yes, do keep us posted! I just emailed my observation report to Dr K and am looking forward to his response. She had about 4 improved days during the observation period and then it went downhill. Ironically, now that the observation period is over (as of day before yesterday), she had a really good day today! So maybe things will improve. PANDAS McNuggetsw/fry/coke

Vickie, I think I could say we would not be on this forum if it had not been for a vaccine on March 30. My daughter probably had PANDAS lying dormant for a while with no symptoms, but a Hep A vacinne has changed our lives dramatically to say the least. We did the Hep A vax for the whole family b/c of our adopting twin 3 year olds from Ethiopia. Dr k says this was the trigger for our dear daughter. The exacerbation was immediate. The choice must be yours of course after weighing the risks and benefits. This was our experience and I wish it could be undone. Unlike many children from Ethiopia, ours did not come home with Hep A. PANDAS McNuggetsw/fry/coke quote name='Vickie' date='28 July 2010 - 09:26 AM' timestamp='1280323609' post='77293'] My 4 year old is due for her annual well child check up. I am still undecided about vaccinations. I live in a state where I can take a philosophical exemption. I think I am on the fence about this because my older kids are up to date since PANDAS didn't surface in our family until they were both up to date for kindergarten. Since then, I have opted not to do flu vaccines, second chicken pox, etc for my older kids. What's your opinion on this? Would you opt out of immunizations for the 4 year old, would you just space them out more, would you get antibody tests done to see if the previous ones still show immunity? Would would you do? I'll add that my 4 year did have strep before without any PANDAS symptoms surfacing. However, I do believe we caught the strep very fast. She does not get symptoms. She was only tested for strep because my PANDAS son had strep. That was in March 2009. Her last strep test was in May 2010. Rapid and cuture were negative. She was tested because her non-PANDAS brother exposed and the ped didn't run a culture on him, so we couldn't be sure he didn't have strep.

My heart goes out to you and your family. We are new here, so I have no advice (not that you are asking). I hope the ivig does wonderful things for your son. PANDASMcNuggets w/fry/coke

Thank you Thak you Nancy! :-) quote name='fcefxer' date='26 July 2010 - 10:55 AM' timestamp='1280156116' post='77035'] Yes! Here it is: Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, NIAID-supported Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2217 email: madeleine-cunningham@ouhsc.edu Email Dr. C personally with the details regarding your child. Onset, symptoms.... She will send you a cooler with blood draw instructions for your local lab. Do it on a Monday so you won't be dealing with a closed lab and blood spoiling. You will need to send a tax deductible check for $400. It will be the best money you've ever spent. ( Is it still $400 now that Dr. C won the 50K?) Nancy

Hi friends, If this test is still going on, can someone give me the contact info? I have looked around the forum and have not been able to figure that out. Thanks so much! PANDAS McNuggetsw/fry/coke

Dut, Yes that is a good idea. I think our next call will be to Dr. T if I strike out locally. Thanks for your input! :-) PANDASMcNuggests w/fry/coke

Mati's mom, Thans for that info. I was wanting zithromax, thinking that may be what we needed. Also, spoke with a family that used Biaxin for myco. I don't know if it is current or past infection, still waiting on that. We are almost at 2 weeks on the Aug. and she is still having dark days. :-( Hoping to give it a month on the Aug. then find someobody else I hope who will give us the zith. PANDASMcNuggests w/fry/coke

Thanks everyone for the studies! I went in with copies in hand and I have a refill for two more weeks. Doc wants to bring in an allergist as he does not believe it is PANDAS. Tested daughter for celiac today. She did test postive for a mycoplasma infection, so not sure where that leaves us..... Anyway, thanks! you all are wonderful. PANDASMcNuggets w/fry/coke

Thanks everybody for the links and info! I will pull those up this a.m. And Mary, we are with Dr. k also, but as you probably know, he does not believe in the effectiveness of abx and says our daughter should go straight to IVIG. Initailly the abx seemed to clear her sinusitus which she had for over two months, but this a.m. as we go to the doctor she is full of mucous again! As far as the OCD, we have seen ups and downs so far and don't want to give up yet, as it has not even been a full two weeks on it. She is on 2,000 mg 2 x a day augmentim XR. She is 115 pounds and 5'6". :-) I really wanted to try azith first, but doc would not go for it. Hope this goes well! PANDAS McNuggetsw/fry/coke

Anyone? Anyone know? Ferris Bueller...?:-)

Hi friends, Tomorrow a.m. we have to meet with a local pediatrician who I think is a PANDAS skeptic, but at least gave us a two week rx for abx last time. I'd like him to give us another two weeks rx, but was hoping I could point him to a study that it takes at least a month to fully evaluate an abx's effectivness for a child with PANDAS. Can you pont me to anything like that? She is doing a bit better with symptoms and I don't want to cut off what improvement we have seen so far. Many thanks! PANDAS McNuggetsw/fry/coke