Pudgeo Posted May 18, 2008 Report Share Posted May 18, 2008 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 Link to comment Share on other sites More sharing options...
twobit Posted May 18, 2008 Report Share Posted May 18, 2008 Hi. I've got a friend who is a doc and he sends me stuff from the NIH web site since my son started having tics last month. I'll look for one that mentions success rates, but between plasma exchange and IVIG, I think they both have had success. What are the risks? Have the docs told you? How does insurance cover it? Link to comment Share on other sites More sharing options...
ad_ccl Posted May 18, 2008 Report Share Posted May 18, 2008 Our son has PANDAS - the doctors in Canada would not entertain the idea of IVIG as they said there were too many risks - if my son did not get better with other courses of treatment I would have gone to the states and had it done there - but luckily my son has made steady improvement over the years and is doing amazing. He has been on antibiotics since the explosion of tics - many rounds of different kinds - ultimately we have found azithromycin works best - he takes it every 5 days and it works to help prevent further strep infections as well as working as an immuno modulator. We also worked with a naturopath - and did some testing to find what other things were bothering his immune system - we removed foods he tested positive for and also started using vitamins - we have never used any "brain drugs" and have been lucky not to need to - although early on I did have a prescription filled. Are you able to try azithromycin (which seems to work really well for many PANDAS kids) before going ahead with the IVIG? I have heard mixed reviews with IVIG - I have read that it has been like a miracle and the child returns to normal and others have reported the symptoms still come back. You have a few more weeks - what other treatments if any have the doctors recommended? If none - then ask them to humour you with azith. What are your sons symptoms like now? What are his ASO titers like now? Is there still an active infection? Has he been on antibitiocs since his illness in Jan? Link to comment Share on other sites More sharing options...
Pudgeo Posted May 18, 2008 Author Report Share Posted May 18, 2008 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 Link to comment Share on other sites More sharing options...
Pudgeo Posted May 18, 2008 Author Report Share Posted May 18, 2008 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 Link to comment Share on other sites More sharing options...
bmom Posted May 18, 2008 Report Share Posted May 18, 2008 Coud you please give me info on the test you are talking about or the doc who did it? Doctors keep dismissing my son as PANDAS based on low titers, but I think he may be. I would like another test to see if he is or is not. Thank you. I am asking about the IGM test. Link to comment Share on other sites More sharing options...
Pudgeo Posted May 18, 2008 Author Report Share Posted May 18, 2008 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 Link to comment Share on other sites More sharing options...
ad_ccl Posted May 18, 2008 Report Share Posted May 18, 2008 I just emptied out some of my mailbox...did not realize it was full. I am heading out for the day but will be back in the evening - feel free to PM me. Link to comment Share on other sites More sharing options...
michele Posted May 18, 2008 Report Share Posted May 18, 2008 Hi. Is Dr Gupta a DAN DR.? What kind of a Dr. is Dr. Sanger at Stanford? I was wondering how you were finding Dr's dealing with PANDAS? If the first antibiotic didn't help why didn't they try a different one? How is your child currently doing? How is he currently being treated? Are you nervous about the IVIG? Pleasekeep us posted on his results. Michele 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 Link to comment Share on other sites More sharing options...
Pudgeo Posted May 19, 2008 Author Report Share Posted May 19, 2008 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 Link to comment Share on other sites More sharing options...
bmom Posted May 19, 2008 Report Share Posted May 19, 2008 Pudgeo, I am trying to decide if my son has PANDAS or tics not related to strep so could you possibly describe the changes your son has since his illness and a little about the onset? Thank you!!!!!! Link to comment Share on other sites More sharing options...
Pudgeo Posted May 19, 2008 Author Report Share Posted May 19, 2008 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 Link to comment Share on other sites More sharing options...
michele Posted May 19, 2008 Report Share Posted May 19, 2008 Thanks for sharing. Where do you live? I am glad you found another friend with a PANDAS child. It is helpful to you. Also I am glad Dr's are trying to find you help. My son had PANDAS off and on with episodes revolving around strep and virals and immuniztions for three years before we tried long term antibiotics. First we did pen vk. It really didn't help that well. He still had symptoms and compulsions. Then we did amoxil and finally omnicef. Omnicef has helped the most. 250 mg once a day. He has been strep free and fairly tic free for a few months now. I think antibiotics do help for some reason. They must trick the brain so it doesn't produce the antibodies to strep that cause the inflammation. I can't say it helped us 100% because he still had attention and impulsive/emotional issues but he is much better on it. I firmly believe that the antibiotic along with the abilify are making my son a much happier child. Please keep us informed on the IVIG. If I could find a permanant fix it would be wonderful. I wish he didn't have to take daily antibiotics but no Dr. has suggested IVIG to us yet. They were keeping it as a last resort. How old is your child? Has this Dr. used IVIG for PANDAS before? Michele 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 Link to comment Share on other sites More sharing options...
Pudgeo Posted May 19, 2008 Author Report Share Posted May 19, 2008 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 Link to comment Share on other sites More sharing options...
michele Posted May 19, 2008 Report Share Posted May 19, 2008 Is Kiaser your provider? I never thought of consulting our insurance carrier Anthem for a list of Dr's to see for PANDAS . Is that what you did? We had a DAN. He lists IVIG on his site but never suggested it for my son who was 5. He wanted to do chelation, supplements, Hbot. I used the supplements, Nystatin for detox, and amino acids. This seemed to help. Michele 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 Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now