mom md

the immunologist thinks my son has an immune system issues and that the PANDAS/SC developed because of that. He also has severe allergies and failed vaccine. She gave me a handout on SCIg (subcutaneous) IVIG that can be given weekly at home. I know that is not a lot of data out there on PANDAS kids but it seemed to be a great option for kids with CVID. Has any one else been given that option?

Latimer said my son was a "toss-up" between SC and PANDAS after she met him after improvement on azith for three months. He still had a lot of chorea, milk-maids grip, darting tongue, etc. Back before the antibiotics he had full chorea movements. He did the piano playing and the dancing. The best way to describe it was like break-dancing. The movements were very fluid. Very creepy. After antibiotics they became shoulder rolls, and finger rolls. He also continued to have a lot of chorea in his fascial expressions. His Cunningham value was 201% and in the SC range after three months of treatment with azith. Had we tested it in the full flare my guess is we would have been even higher. I think they are all on a spectrum of disease. (As an obstetrician I think of it like pregnancy induced hypertension developing into preeclampsia. If you let it go untreated long enough if may progress as ours did).

My son's IgE levels were around 280 which is very elevated. He does have severe allergies to just about everything in the environment.

This may be way off...but in obstetrics and early fetal development when a mother has an intrauterine infection like chorioamnionitis, the endotoxins of the bacteria increases cytokines and that process breaks down the BBB and can lead to neurological issues like infections and CP. May not have anything to due with PANDAS but I thought I would mention it.

Yes, they think it was strep pneumonia but only because that is the most common. We have no proof but it responded quickly to Rocephin IV. They really were not around each other much and it is not supposed to be very contagious but then again we clearly do not follow the normal path. The timing makes sense. Interesting though that my PANDAS child never got sick. It is like his immune system works but in a wacked out way.

My guess is yes. The flu shot takes two weeks before the antibodies are produced. The ASO generally takes two to three weeks to rise. We started seeing subtle things a few weeks ago when my other son got sick with pneumonia but no real problems until Thursday. I will never know what caused it but I think the flu shot was not smart because I can't say that did not contribute. I really don't know. Maybe I should not of had the cavity filled either but after reading about someone who relapsed from an abcessed tooth I was scared not to because it was a big cavity. Now we are seeing so much hyperactivity from the steroids I can't say even what I am seeing now. Once this all settles though I am going to talk to the immunologist about trying to get the IVIG. Shaesmom said her daughter has PANDAS, severe allergies, and failed vaccines and got it. We have failed vaccines and have severe allergies too. QUOTE(mom md @ Oct 24 2009, 11:20 AM) I did also want to mention that we had the regular flu shot 36 hours before the big flare. I do not think though that this was the cause. The ASO titer takes several weeks to rise and the flu shot take 2-3 weeks to build up immunity so I doubt they are connected. I would though recommend not to do it like I did because it clouds the picture. My immunologist though and Latimer said he needed it though because he is "immunocompromised". Damned if you do and damned if you don't! mom md - do you mean here that if the flu shot were to cause any problems for someone, that it couldn't be that soon? Faith

I did also want to mention that we had the regular flu shot 36 hours before the big flare. I do not think though that this was the cause. The ASO titer takes several weeks to rise and the flu shot take 2-3 weeks to build up immunity so I doubt they are connected. I would though recommend not to do it like I did because it clouds the picture. My immunologist though and Latimer said he needed it though because he is "immunocompromised". Damned if you do and damned if you don't!

Thanks everyone for your thoughts and support. When I say "stress" I am referring to immune stress. His brother had the flu and pneumonia, then he had a cavity filled and he had nitrous oxide. It was a big cavity and could not wait. We are going to try to get IVIG, but the immunologist wants to wait and see what the steroids do. His younger brother just went to sleep and has a temp of 101.5. It is like we can't get a break. I do think three PEX tx are enough but I think the underlying immune issue is still there. Hopefully if you act quickly with steroids it can stop the process. Dr. Latimer is aware and we are all hoping the steroids will work. He is on 30mg/d x5 days, then a 4 day taper. Given all the illness around us they wanted to see if a short course would work.I have upped his antibiotic also and we are seeing a pediatric infectious disease doctor to get her input in two weeks. I will check in later. Thanks

James Leckman at Yale explained that with these children their immune systems are not right and it can take a simple stress to pull the trigger and make the body make antibodies. That is what is scary. I can protect my child with antibiotics from strep, but how do you control the immune system from pulling the trigger?

We had headaches also. My guess it was part of the encephalitis.

His Ig G, A, and M were all normal. His IgE was really elevated but that was allergies I think. He has a history of ear infections, allergies, two trips to the ER for breathing treatments with colds(no asthma though) and chicken pox after the vaccine. His diptheria and prevnar did not take but she thinks in order to prove that to the insurance company I will nee to re-vaccinate with pneumovax. No thanks! She thinks he has an immunodeficiency but does not think "immunodeficiency not otherwise specified"will cut it.

I did accupuncture for a while a few years ago and really liked it. I had several issues that were helped. I really think it works. If the "energy" in these kids is out of wack could it not help get it flowing the right way and calm the immune system? I know they do it on kids a lot and use rolling balls instead of needles. My son has been to so many doctors though I don't want to add anything else if people think it is a waste.

We were almost 4 months post-PEX and I was just thinking we had this thing behind us. I got a call yesterday from school and my son was "out of control". It was all the old things from before. She took him outside and let him walk a little and then after about an hour he was back to his old self. I rushed him in and his strep culture (rapid and culture) were negative. His ASO is up to 500. It was 1750 when we started this nightmare and droppped to 950 with antibiotics. We were under 100 after PEX. He is on azith 250mg qd and what scares me is that he tests negative for strep. My guess is stress caused this. My husband said he saw it coming. The last two weeks he had seen a few issues sporadic issues that made him worry. My other son had H1N1 and pneumonia two weeks ago. We started him on steroids yesterday and he was still disrutive today but better and not "out of control". Our new immunologist handles the issue quickly which gave me some comfort. I am trying to focus on the positive. We spent 2-3 years not knowing what was wrong with our son and now we do. Also, he does seem to bump his ASO with symptoms which I know it is not the antibody that is doing the damage but at least it is a tangible something the doctors can see. Also, there are treatments that work (they just are incredibly expensive and hard to get!) The immunologist wants us to do IVIG and we are going to work toward trying to get it paid for. Any tips? BCBS picked up the PEX tab but they may say enough is enough. As I told my husband too, this is our new "normal". It will never be like it was before.

Ditto to you both. I also wanted to add that when we went for our follow-up she was running behind as always. She never even ate lunch that day because she had a talk to pediatricians scheduled at lunch to spread the word about PANDAS. Her office said they went from seeing one PANDAS patient a week back in May to now up to 4-5 call a day! This is also in addition to the 25 + years of regular neurology patients that she follows. My hope is that she does not wear out. She is also working on forming a group of doctors up there (hem/onc, immunologists, etc) that can help her. The doctors up at Georgetown are unbelievable and she is right across from the NIH and John's Hopkins. Maybe if enough of us continue to flock there the PANDAS voice will spread to others around her.

I know you are glad to be home. I have been thinking of you. Claire

My son 's temp went to 104.8 and he said it hurt to take a breath and his back hurt. This all happened 16-18 hours after he got sick. It hit like a freight train. He had a upper respiratory infection with a cough and runny nose for a few days, got better for 48 hours, then spiraled down. I heard crackles with my stethescope but the pediatrician did not. I asked for a a chest x-ray and she did a CBC first. His white count was 36,00. Very scary.

I did give my PANDAS child the regular flu shot and no issues so far. I am not planning on giving the H1N1 but I have to get it or I can't work. My other son had the dreaded H1N1 progressing to bacterial pneumonia and was severely sick and in the hospital for three days. I have to say as you sit in the hospital watching your child in critical condition with the flu, the vaccine seems like a good decision. My other two children had coughs and runny noses during this time but never got sick. My hope is that they were exposed and have some immunity. I agree, you can be damned if you do and damned if you don't! A very difficult decision. Dr. Latimer did say we were fine to get the regular one though.

Do you want a pre-treatment picture(he looks sick) or a post-treatment (he looks bright-eyed and healthy)?

We saw a cardiologist and the ECHO was normal.

We had PANDAS without knowing for two to three years. Two times during that peiod we treated severe sinusitis with Augmentin and steroids and things got better. Last fall things started getting worse...more insomnia, moodswings, anxiety, OCD, tics, lack of focus, etc. By January we were in full chorea. His ASO was 1750 and his antiDNase B was 1350. After the diagnosis and three months of antibiotics we still had chorea and our Cunningham results were in the Sydenham's chorea range. We then did PEX with an immediate cure. A very fascinating look at what can happen if left untreated and how the damage can be progressive.

I am so sorry you have been through so much. The dark circles and pale skin were definitely there when my son was sick. When you looke back at his school picture compared to this year it is really impressive. My hope is that given the stress of the infected tooth the symptoms flared and hopefully things will improve. My other son had a pneumonia (we still don't know if it was H1N1 or bacterial) and I could see my son Carter that had plasma exchange start to flare a little. I saw some tics show up and some emotional/anger moments like before. I am pushing sleep and rest and trying to see if we can make it all go away. He seems a little better but it makes me also wonder if he has had a strep exposure that I don't know. We just sent our 3 month bloodwork out last week to Cunningham which was drawn in the middle of all this so we shall see. Latimer said that stress will cause the symptoms to re-surface as he heals. Hopefully that is all it is. Please keep us posted.

I am so sorry I have not replied earlier to this post. My other son had pneumonia (probably strep pneumonia) and he was in the hospital. My son Carter is 8 1/2 and had the prevnar vaccine in Charlotte, NC. I will look up the dates and Lot # today. Dr. O'Connor wants him to be re-vaccinated and get IVIG if he fails. I don't feel good at all about re-giving that vaccine. What are the rest of you doing?

i really appreciate all ythe active discussion regarding this topic. We came home today and I am exhausted. I want to read and reply to ythese posts but I am wiped out. My son with pneumonia dropped his blood pressure throughout the night and it was a long night. They said he was OK to go home this afternoon. I hope they are right. I read the web-site of the girl who got the pneumovax after PEX and was set back for two years and I am scared to death. I think for now I am going to do nothing and really talk to the immunologist about other options. I am also very hesitant about the flu shots. We are doing so great after PEX I hate to mess with anything. Dr. Latimer OK'd the allergy shots which I will do, but I think I will hold off on everything else for now. Interesting though I did see a little shoulder roll tonight that was a small chorea movement. Dr. Latimer said we would continue to see subtle signs, especially when he was tired. we have all been through a lot this weekend and my guess is that is what brought it on. I think though it was also a little message from someone above to not mess with success right now...a little reminder of how far we have come.

My sons ANA was 1:640 prior to PEX and negative post-PEX. Just goes to show this is an autoimmune disorder.

I don't remember if he had a reaction to the prevnar vaccine and back then we did not know about PANDAS. I wish I could remember. Also, I am so sorry you have two sons with this. Very scary. I have read several of your posts though and you have been very pro-active which is wonderful. Good luck. Strep pneumonia is treated with IV Rocephin. No one has mentioned IVIG becuase he appears to be responding well. Hopefully we will be home soon.