norcalmom

Have you tried prednesone? I think if it is brain inflamation if might help.Could also be some thing else going on. I don't think headaches is a typical pandas symptom, maybe you should try to get an MRI done to rule out some of the other stuff.

Have you had Cunningham tests done? Cunningham uses both classic tourettes and classic OCD (as well as normal human sera) to compare to the pandas sera (results are drastically different, except for one sample - probably a misdiagnosed pandas kid!). So, I think it might help you decide what camp your ds is most likely in. Best of luck.

I would suggest trying to get your insurance provider to provide you with infusion centers that are considered in network. There is list on this board of doctors- I think pinned at top - of pandas doctors by state. See which are in your network. It all comes down to what insurance you have. I hope you have some. We do, but so far nothing has been covered! And next time, will definatley search out a way to do it in network, and try to get coverage. Also, I think that Corum ivig centers are nationwide and the most affordable. So, might google them, some others ont he board have used them.

I got email with an attachment of the 4 antibody titers they ran.

Can you add a button for blood drawn when in or out of exacerbation for cunningham test results? Maybe a button for taking a couple of the popular drugs (SSRI's or others?) I think some can effect Dop 1,2 blood levels? I've been looking up the four anti-neuronal antibodies cunningham decided to test for in addition to the cam K II (I'm trying to gather info for letter to insurance company). Interesting. I wonder if our kids would correlate to what they are each suspected to have causes in - anti-Lysoganglioside - chorea, cancers Anti -Tublin - SC and alzhiemers Anti-dop 1,2 -parkinson's disease, schizophrenia, intense suspicion and paranoia ds was high Cam K II, and anti-lyso.Main symptom tic. But he was not in exacerbation. In exacerbation he definatley had more sysmptoms that would fall into suspicion and paranoid category (like checking and confirmation questions)..so makes me wonder if when in exacerbation kids are more likely to have all levels high(esp Dop levels). Can't wait to see results! Thanks for putting together. Only you would get 60+ replies in what? an hour? two?! We love you Buster!

your right!! Breastfeeding must lead to pandas!! ha! At least I can lay my mommy guilt asside on this one. I'm the ONLY one that only did it for a couple months?

Just looked at data. Facinating. There are so many possible relationships. #4 - it would be interesting to see the # of kids that have more than 2,3,4..symptoms. Seems like our kids get soo many symptoms at same time. Data is there, is there way to get survey money to show that? #16 - would be interesting to see if there are any correlations between these numbers,i.e. High antiLysoganglioside - higher cam K. Also, if any correlation between a particular titer and any particular symptom.(depression and anti-dop, tics and Cam K....) May relate more to the question of primary symptoms rather than overall symptoms, becuase there is no quantification in the general sypmtom list, or correlation between# of symtoms, and elevated numbers. Probably needs to be done in a spreadsheet. I could try to do this if you want to send me raw data. May need bigger sample of cunningham test results..but maybe not.

Maybe an option for other types of strep found (in sinuses, perianal, skin?). Also have read that doesn't raise ASO. ADHD option for symptoms. Nightmares, insomnia (night time disturbance and insomnia are our first signs of exacerbation coming!) sexual preoccupation taking a long time in bathroom immunodeficiency’s - maybe a question with buttons for out of range on common IgG, IgA, IgM, subclasses strep pneumoniae levels? We failed all but one on both of these test. I am SHOCKED that ds failed these as well as is low IgG and subclass low, because aside from pandas, is what I would consider very healthy kid. 2-4 cough/colds per year, a handful of ear infections when a toddler. He did have pneumonia when he was 6 though.Diana recently sent me email saying that this is VERY common in pandas kids. I thought we were one of the uncommon ones becasue ds had not asthma or history or frequent sinus or other infections. But when I got our test results I found we are STILL in that category. Most people don't know that disgust itself can be an obsession ( we didn't until it happened to us) from what I heard from our psychiatrist, disgust is often the precursor to the behavior (like hand washing). In our case, ds has disgust - but not the behavior (other than yelling at me) that follows. ASIDE: I read something (somewhere online a long time ago, before diagnosis) written by a pandas parent. It said her son needed her near at every moment, but was disgusted by her at the same time. Simultaneously drawn to and repulsed by her. And I said...bingo! that us. Its hard to find information that will lead you in the right direction if your kid isn't doing the "normal" ocd behaviors, because you are looking for that specific behavior as a symptom. For example I was googling "looking into the sun" and "digusted by swallowing" Dr. K said he's seen all kinds of really odd stuff, and isn't particially concerned about what it is they are doing. But, it helps to see your child's behaviors among the listed. so the longer that lis, in my opinion, the better.

You have to multiply that chance by the # of donors that make up the ivig product. Although, to give blood, the donors are screened for this risk factor, inlcuding being a resident of the UK, channel islands or other mad -cow disease locations, even having spent over 3 months there between 1985 and ?. Its still more than just eating beef. Gulp. we have ivig on thursday. Today ds asked me if I thought it would hurt less to die in a hospital. He said that if he was going to die he wished he would die in his sleep. Just what I want to discuss two days before leaving for Chicago. I was under the impression that the product was screened and cleaned of all known diseases. I guess prions are too difficult to remove or kill? I have to keep reinding myself this is a routine procedure, and my ob's office has 4 chairs dedicated to it for women whose body rejects fetus/or sperm, althought hey get lower does. I know at least 3 that have had it done for that purpose, probably more that I don't even know about. All are healthy, with healthy kids.

Stopped at 10 weeks due to severe reflux. He may have gotten a little after that, but that is when we started to wean. He was on the heavy, thick formula that comes in a can - he was able to keep that down longer and gained some weight. Went to solids early too. Reflux resolved at approx one year. Didn't breast feed my daughter all that much longer (4 months - returned to work) she does not have pandas.

LOVE hearing these kind of stories. Thanks for posting and enjoy your summer with him!!!

Great dentist! the word is getting out. What antibiotic? How much does your child weigh? Thats a big increase! We are due for a cleaning too.

yes. probabaly not coincidence. I realized since I posted about their conflicting pages just a couple days before one disappeared. There is a very common service that is free from google. You can get an email anytime someone types a word or a phrase - anywhere - on the internet. In the email there is a link to the tread, or blog, or whatever, so you can join the conversation. It is very commonly used (I used it myself in my business, and any big company will have pr and marketing people who use it to monitor their products, brands, what people are saying, etc.) So..big brother is watching! I would add pandas to my watch words, but would get too much junk e-mail from zoo and animial sites. Really, this disorder needs another name!

Thanks for forwarding that thread. I am lucky I had been reading this board when I went to the immunologist a couple months ago and we decided to run these tests. If not, I would have just followed his advice and got the re-vacination, but becasue of something I read about vaccines and pandas kids here, I had decided to move on to another doctor. Honestly, I didn't think much of the low numbers on the serotype test. The doctor almost expected them to come back low and prepped me that the next test(if low) would be with a vaccine. It seems pretty common that these are low? I'm gonna google that tonight. How do we go about warning people (and doctors!) - maybe the diagnostic flow chart should have some warning, bcs it seems like alot of our kids fail serotype tests, and the immunologists' next step is to the prevnar (or other) re-vax. test. As a matter of fact - I gave him copy of the flow chart and the cunningham study report because he was interested in it. (not enough to become all that knowledgeable, but mildly).

you know, I posted about this a while ago to see if anyone had tried it and was surprised that not many pandas people had tried it. Did you post on the ocd borad? It sounds like there are alot of other studies going on now with it - since the trich research so positive - including gambling and cocaine addiction.

Thank you for posting! I am sure that you have helped some others that will see themselves in your story. all the kids are different and the defination and diagnosis criteria are still evolving. Its important that stories like yours get out there. Thats why I satarted post after serval months of reading. Then I got hooked! Welcome and best of luck for continued success!

Hi all, I've been reading some threads about vaccines, as well as many reposnes to my call for help on insurance. I have a question. ds "fails" on his strep. pneumoniae IGG AB 14 serotype test. He is only above 2.0 for one of the fourteen serotypes. Nine of them were below 0.3. and if you read the page long description of the test it appears that anything below 2.0 means you body is not protecting you from the disease (as it should since ds was vaccinated). However, in order to prove that is the case, immunologist wants to do pneumococcal re-vacination (prevnar?) I've been told that if he fails the test and body does not mount response, he would qualify for insurance for ivig. There is NO WAY i'm injecting him with what might have caused this. Is this test involving a vaccine considered safe for our kids? Sorry if some of you have alread seen this, I tried to search forum but so many things came up would take all day to find specific answer. Have some of you done this test (or rejected it?) Or at least know more than I do on the subject? Buster(and other scientists) - should there be a Q&A or FAQ update that includes vaccines and tests that are counter indicated for pandas kids? I'm thinking the NIMH isn't going to be issuing anything like that soon!

Thanks for all the awesome information. I just discovered they removed the page what says that ivig is treatment for pandas (but I have hard copy!). They probably get alerts whenever their name is typed (I myself ahve this service from google for my business, so I can follow chats about my product). momtotwopandas - you are a wealth of information! And UCLA is alot closer than Chicago if I need ot do this again. About the testing for failure - I am VERY hesitant to give my son any tests involving vaccines. Immunologist wanted him to come in get vaccine and then see how he would respond to see if there really was a problem. I heard vaccine and I baulked! I'm assuming this is the prevnar test you both are talking about. on his strep. pneumoniae IGG AB 14 serotypes he is only above 2.0 for one of the fourteen serotypes. Nine of them were below 0.3. I may post this separtely becasue I have had so many tests done lately its hard to know what is normal and what is not. These didn't have a range, or anthing saying they were out of range, but if you read the page long description of the test it appears that anything below 2.0 means you body is not protecting you from the disease.

Thats great! Thank yo so much for posting! We are hoping for similar gains!

Thats a very diffiuclt decision. You also don't want to expose a known pandas child to somehting that an unvacianted non-pandas kid might bring home. I live in California. There is a whooping cough outbreak going on right now. Its killed 6 kids this year. The more likely the rest of your community to NOT vaccinate, the more likely you will be exposed.We deciced to get H1N1 for our entire family (except pandas son) because we didn't wnat him to be exposed to any illnesses last year. I've never even had a regular flu shot. But, our daughter is older than pandas son, and has never had any pandas symptoms, so I wasn't even thinking about it setting her off. http://today.msnbc.msn.com/id/38447752/ns/health-infectious_diseases/

You can try tilting the bed a little, or proping him up a bit with pillows too. Sounds more like reflux than pandas. How are his other symtpoms?

I don't think ds's immune deficiency is bad enough. He doens't have lots of infections or allergies. Other than pandas, he's relatively healthy. I was surprised that he had low IgG and low Subclass 1. HIs IgG is low on some ranges and normal on others - he is borderline there, but his IgG subclass 1 is 386 and the range is 423-1080. This is ridiculous. He's looking into the sun for god's sake! If he goes blind, how much money will they be shelling out then? I'm off to figure out next step of appeal process. Also to see how to get Dr K's fees covered, since they have no in-network providers that can provide treatment for pandas in my area. also found out that the Medical Center that Dr K uses (which looks huge) isn't in Aetna's network either. Gulp. So now my hopes for coverage are cut in half becuase they only cover 50% out of network. I spoke to the person that answsers the 800# yesterday and she said that I should confer with my doctor and show him their page that considers ivig experiemental for the codes he used.They don't dispute that pandas exists, just that ivig is experimental for pandas treatment. Not that we talked about pandas..haven't even mentioned that yet. But it is clearly list as a condition for which they consider ivig experiemtnal.

I don't know how to avoid the p-word..its all over ds records. Good luck and thanks for the advice! Ironically, while aetna's site says that ivig is considered experimental for pandas, it also has a webpage that explains disorders and their treatments, and there it says that ivig is used for treatment in some pandas cases. I'm debating just hiring someone to fight it for us. I think I saw an old thread that mentioned companies that do this. Hard to spend even more money when the price tage is daunting to begin with.

We have Aetna, and in searching back through old posts I don't think I've seen anyone get coverage thru them for ivig unless it was a clear immuno deficiency. We are seeing Dr K. He gave us diagnosis codes:279.9, 348.30, and 348.39 NEC looks like those are Unspecified disorder of immune mechanism, Encephalopathy- not elsewhere classified, and Other encephalopathy respectively. Any advice before I go put my foot in my mouth? I am not hopeful, but perhaps with a little advice from those of you who have already been through this I might get lucky. Thanks!!!!!

We haven't done any testing for Lyme. I see that many of you are doing it post IVIG. Did they have Lyme(and pandas) prior to ivig? It isn't something they can GET from ivig is it? Do the symptoms wax and wane like pandas, or are they constant? Thanks!