Pudgeo

My son is definitely PANDAS awaiting IVIG..he is urinating frequently during the day..but it's also the OCD where if we're out he wants to go into every bathroom, like at the store....drives me crazy..Sarah

I am open to any suggestions!! My son is a MESS! He's very agitated, tons of OCD....he is a completely different child than he was a year ago!! We got back a french porphrins (sp?) test that shows HUGE immune issues with my son...Sarah

Michelle, unfortunately mainstream Dr are pretty clueless on PANDAS... I even contact rhumatologist pedi at Kaiser and he never got back to me.. I would like to know if anyone has treid LDN for immune dysfunction???? Sarah

Sorry..we live outside of San Fransisco (Concord) Kaiser is my HMO and I had to look through their website to try and find a Dr who might know about PANDAS I am dealing with a Pedi who specializes in infectious diseases and he doesn't really understand PANDAS (I thought he did) I then found a rhumatologist pedi in Sacramento (both auto-immune) and I haven't heard from him. I feel like all these Dr try to pass the buck..they don't know what to do with our kids..Sarah IVIG is only approved insurance wise for immune definciency not over active like our kids..how messed up is that??

Thanks for the info..I will look into Omnicef and see what's it's about. I amazes me that at a huge hospital HMO like Kiaser they have no idea how to treat my son. Dr. Gupta is a researcher who does IVIG for DAN! Dr.s My son is now 10 and has now had this for 16 months.. Sarah

Hello, My son is dev delayed & speech delayed, he uses sign language and is quite proficient.Never before was considered on the spectrum or autistic. He was about a grade level behind, he was doing great in school, happy, social kid and then had 3 day illness in Jan 07, that's when it all fell apart! He became spacey, quiet, huge personality change. Also he had tingling in his arms..the Dr's thought it was seizures..so we were on all sorts of sez meds for 6 months. At this time he was doing OK not great. I just found out sez meds are anti-inflammitories so they were helping his brain! Also this is when the anxiety/panic started to get really bad...out of the blue he was a wreck. I had brought up PANDAS to the Dr's too.... Then In July I think he must have been reinfected with something because he became a mess....spacey/checked out/ vocal ticks...moving his hands funny and of course I take him to my HMO and they prescribe anti-anxiety meds...we still use ativan. Thank goodness I took himto private Dr for testing and she did PANDAS test on him which showed very elevated IgM's!! His symptoms have waxed & waned....but lately everyday is bad... I also recently met up with another MOM in my area who thinks her son has PANDAS...we need to educate the Dr's on this stuff!! Sarah

Hello, In response to your questions..Kaiser my HMO is referring me to Stanford neurologist Dr Sanger. When they made the referral they told me it would be 6 months before I could get an appt. No, I do not have alot of confidence in him..because I think we need to see an immunolgist.Also I think Kaiser doesn't know what to do with me so they are refferring me out.I told Kaiser that!Also Kaiser has known my son was not well for 16 months and he's gotten worse..so I don't have alot of confidence in them right now. I have the attitude that I will figure this out on my own! So I went to private DAN! Dr and she referred me to Dr Gupta at Univ of Irvine. If your have PANDAS then it is the anti-bodies that are the problem. the infection is gone. Anti-biotics might help clear any lingering infection but it is trying to retrain the antibodies to not attack anymore. My sons IgM's were high which means his antibodies think he has an acute infection right now and they are trying to fight it..but the infection is long gone so the antibodies are attacking his brain & nervous system (thus the OCD/anxiety) As for for IVIG my son is so misrable and so unlike his former self that I feel this is our only option. I don't see alot of huge risks with it. The only problem could be we give it and we don't see any improvement, which could happen. I feel since my son has had this for so long 16 months that antibiotics were a shot in the dark... Sarah

Hello, My son did not have high ASO titers so that's why Dr kept saying it wasn't PANDAS. Luckily a private Dr I went to did a PANDAS/OCD panel on him from Neuroscience and the numbers came back high (IgM's and elevated IgG's) You need to check anti-body levels to strep..I had to pay about $300 for test but it was what fianlly gave me the answer to what was wrong with my son. When I took the results to Kaiser my HMO they didn't know what to do with me. They referred me to a Dr Sanger at Stanford. I will call Monday for appt but I have heard there is a long wait..If Kiaser can cannot come up with some sort of a treatment plan for me I will go to LA on June 2 for Dr Gupta. What I realized is regular pedi's don't know how to treat this and I went to a DAN! Dr who referred me to Dr Gupta in LA for IVIG. She had no doubt in her mind that this was PANDAS based on my sons behavior (OCD/ANxiety/ vocal tics which were not there before the illness) and the test results. Sarah

Hey ad ccl I tried to send you private message but it says your mail box is full?? My private email is PUDGEO@aol.com Sarah

Thanks you for the info...THe Pedi wanted to try cephalex first (anti-biotic) so we did..I think it made my son worse! Then I realized my pedi really didn't know how to treat this since he really thought the anti-biotics would have cleared it up and I knew it was a long shot.. My sons ASO titiers were never high and after his illness they never did a throat culture. Because my son was mis-diagnosed (and I had brought up PANDAS to the Dr and Neuro last year and I was dismissed) besides the anti-convulsants then they tried anti-anxiety meds, seroquel, risperdal...nothing helped except the ativan, so we are still using that to get him school! On his neurosciences test his IgM's were all high and showed a past strep infection. His MBP and ganglioside was really high. I have been really working my HMO Kaiser to help me..but I doubt they will come through..so I willhave to pay $5000. for IVIG in Los Angeles...Kaiser has messed around for a year with my son and I feel his symptoms are worse due to all the meds they put on him. I appreciate all your help..Sarah

I am new to all this too... I know my son has had PANDAS for 16 months because it was never diagnosed properly. His symptoms waxed & waned (antibodies going up and down) and he was on anti-convulsants for awhile, and then I found out anti-convulsants are also anti-inflammitories) so his symptoms subsided...then he became really bad again 6 months ago so I wonder if he was reinfected with something? The most pronounced symptom in your child is a sudden change after an illness..which my son definitely had. I wish I knew more! Sarah

Hi! I am so happy to have found a forum devoted to PANDAS. In Jan 07 my son had a fever for 3 days (he was 9yrs)and he has never been the same. After a year of going around with HMO Kaiser dr's I went to a naturo-path who did Neuroscience PANDAS?OCD panel and my son had really high Igm's. SO I finally had a cause for all his anxiety/OCD that he had never had before the illness. SO now we are schelduled for IVIG the first week of June in LA with Dr Gupta.. Have many of you had success with IVIG? What other treatments are available for PANDAS?Has anyone ever had any Dr suggest anything else? I am hoping the IVIG helps my son..he really is a wreck and a completely different child than he was 16 months ago. I appreciate any advice! Sarah