mom md

James Nelson, MD at presbyterian neurology. He is well versed in his PANDAS knowledge. The docotr that diagnosed Carter' though and ordered the ECHO was Dr. James Lee at piedmont neuropsychiatry. The cardiologist we saw was Dr. Craig Greene at presbyterian cardiology. Hope this helps. Hi Mommd, I am curious to know who your doctor is in Charlotte if you don't mind sharing that. I am curious about the cardiac link, if any. My daughter has a PVC and I was wondering if it might be related somehow. Susan

We have an appointmant tomorrow with our pediatric neurologist here in Charlotte. It was supposed to be a 4 week follow-up to see how we were doing(he recommended Clonidine to control Cartre's movements which I never filled). Instead we went to DC to arrange IVIG or PEX. I was tired of antibiotics and messing around. I think if I had pushed him he would have ordered the IVIG but he wanted me to wait 4-6 months. I am going in tomorrow to fill him in on what we are doing and also to keep a relatinship with someone in Charlotte. When I am there I will try to get him to explain to me SC vs PANDAS etc and should these kids be getting cardiac work-ups. I admit, this whole thing is very confusing. My guess is if your child has just tics, anxiety, OCD you probably just need someone to listen for a murnur but if you have chorea you might want an ECHO. I will try to clarify this.

We have an appointmant tomorrow with our pediatric neurologist here in Charlotte. It was supposed to be a 4 week follow-up to see how we were doing(he recommended Clonidine to control Cartre's movements which I never filled). Instead we went to DC to arrange IVIG or PEX. I was tired of antibiotics and messing around. I think if I had pushed him he would have ordered the IVIG but he wanted me to wait 4-6 months. I am going in tomorrow to fill him in on what we are doing and also to keep a relatinship with someone in Charlotte. When I am there I will try to get him to explain to me SC vs PANDAS etc and should these kids be getting cardiac work-ups. I admit, this whole thing is very confusing. My guess is if your child has just tics, anxiety, OCD you probably just need someone to listen for a murnur but if you have chorea you might want an ECHO. I will try to clarify this.

PEX has less risk of blood infections (never been a case report) because it is just albumin being transfused, as opposed to IVIG which is pooled antibody. PEX is more invasive though, it requires a central line and a PICU stay for 3-4 days. We checked the titers before we decided on PEX just to see if the azith had brought the titers down because he was still having so many symptoms. The nice thing about the PEX is we can check his levels through the process and make sure they get cleared.

I can't type a long reply tonight because I need to go to bed (I am on call tomorrow night) but we did do an echo and saw a pediatric cardiologist to check his heart. 60% of SC patients have cardiac involovement so they thought he should do it. I do not inderstand the difference between SC and PANDAS, especially if the child has chorea movements. I have watched video and I still can't figure it out. My thoughts are they are a spectrum of the same disease. I think anytime you deal with the brain you get a mixed bag of tricks. I appreciate the link to that article. I would love the full text article if you don't mind. My email is dillonandclaire@carolina.rr.com. When I asked Dr. Latimer why she thought it was a toss up between SC and PANDAS she said not all SC patients recover after 2 years and he has chorea. I admit I am still very confused but thankful she thinks PEX will cure him. She did warn about a relapse but at least I know we can do IVIG or PEX if needed and not have to jump through a million different hoops to get it next time. I may e-mail Leckman and see if he can explain it. We did mail off Carter's blood to Cunningham's study so maybe that will help. I e-mail my pediatric ID friend to get some antibiotic questions answered and I will pass on what I find. Thanks again for everyone's concern and support.

Dr. Latimer was very upfront that the genetic issue that caused the dysfunction of the immune system in the first place was there and that he could get an infection despite being on antibiotics. She felt antibiotics were our best defense after the PEX but we may need steroids or IVIG if we see signs of the disease return. She said hopefully it won't but you must be prepared to look for the warning signs and act if you do. She recommended probiotics along with the antibiotics and at this point I have to say we will be staying on antibiotics for a long while. There may come a time later in life when we relax a bit but not anytime soon. One of my friends is a pediatric infectious disease doctor that worked for the CDC so I plan to have a long conversation with here about all this. I will post any helpful hints she has.

After dealing with this off and on for two plus years we finally have found not only someone who will listen but also understands the seriousness of this. Our son Carter has PANDAS, diagnosed in February, after a long journey. His symptoms begain the winter of 2006 and waxed and waned until now. He was given a diagnosis of ADHD, anxiety, OCD, restless leg syndome, and finally PANDAS. In Feb he began having severe mood swings, anger, insomina, hyperactivity, tics, restlessness, and chorea. I took him to a neurologist and said...I think he has Syndeham's chorea and I was told "no" he has PANDAS and that is a tic you are seeing. We have been on azithromycin for 12 weeks now with no improvement in his antiDNase B (it was 1320 and went up to 1360) and his ASD has fallen from 1750 to 950. His mood is MUCH better but he still moves constantly. He no longer plays imaginary pianos but he can't stop moving. Once I saw the levels I questioned...why are we treating an autoimmune disease with an antibiotic? I know I am a gynecologist but it makes no sense! We went and saw Beth Lattimer in DC and she is wonderful. She was impressed with Carter's chorea(which is nothing now...she should have seen him before the antibiotics!) and said his antibody levels are in the top 2% odf patients. She said it was a toss up between Syndeham's and PANDAS but really it's the same. She said they are both rheumatic fever and we had defintely failed antibiotics. She offered us steroids, IVIG, and PEX. We are doing PEX. She said it was a cure. She said with IVIG we may need multiple treatments and with this we can do it until we watch the antibodies clear. It is done in th PICU at Georgetown and takes 3-4 days. He will be sedated for the femoral line and then for 3 hours each day the PEX team will come and drain his bllod, clean it, and replace it. She siad there is less bllod product in this(only albimin) so less chance of infection and she said she thought it was what we needed. We are planning to go back in a month to do this and then she said we would be on antibiotics until Carter was an adult. She recommended penicillin because this is...rheumatic fever. She said IVIG is great too and very easy but we may just need several treatments before we finally get things cleared. We have BCBS who participates with Georgetown and Dr. Latimer seems to think getting it covered won't be an issue. I would STRONGLY recommend her to anyone who is fighting an uphill battle. She was the former head of Neurology at Georgetown and has seen it all. She is very well connected too. She is very compassionate and a parent too. She was also voted one of Washington's top doctors last year and believe me I can see why. We flew up for the day to meet her and it was worth all the efort. I can finally sleep knowing Carter will finally get the help he needs. MOMmd

I think you need to go with your gut. I was given several wrong reasons my son was doing what he was doing, but did not stop until I found someone who would listen. Unfortunately, we are having to go out of state to get things done quickly but we are headed to DC Friday to see Beth Latimer, MD (former head of neurology at Georgetown). She is in private practice and dedicated to treating these kids. I will post our results after we go but after talking to her on the phone I feel we have finally found the right person. The other way to look at it too is this is my kids brain and I want the best of the best to treat him and more than likely I will have to travel to find it. I think this disease is still very rare and the docotrs who are willing to take guidance from the limited reseaarch out there and treat it aggressively are few. Hopefully if we all continue to be vocal and share our stories this will change. Hnag in there...

Eliana Perrin, MD is a professor of pediatrics at UNC and did some of the origional work with Swedo. I have contacted her and she understands PANDAS well and has good contacts at the NIMH. Also, Dr. James Nelson in Charlotte is a pediatric neurologist who gets it. Also, someone told me the department of pediatrics and neurology at Duke were teaching their residents about the disease so they must believe in it. You could call over there and ask who is best with PANDAS. Your family history is fascinating and I am sure the NIMH would be interested in it too. My son has PANDAS and I had scarlet fever as a child and my great aunt had Syndenham's chorea. Hearing you now have 2 kids with it makes me scared for my other two...

Often autoimmune diseases tend to run together and in families and to see GB, have IVIG, and then get PANDAS does not seem unreasonable. Very unlucky, but not unreasonable. His immune system had a tendency to "overreact" and the IVIG only cleared the GB antibodies. The IVIG does not prevent future autoimmune diseases. I think they all work (PEX and IVIG) but need to be compared by speed of recovery and symptoms at one year. I found an article but I need to locate it which was not a large study but had some comparisons. Steroids in my mind have a place but not for real treatment. Chronic steroids are not a good option for kids. Too many side effects. I think it would be reasonable after IVIG to treat a "flare "with a short course before commiting to IVIG again. I also thing steroids has a place as far as seeing if your child will have a response to IVIG. Some kids with Tourette's and OCD may look like PANDAS but they will not get better on steroids, in fact they may get worse. I am seeing the specialist in two weeks so I will report back. Claire

I am so glad you are still seeing a great response. Just a small footnote, neuronal tissue take a full year to heal after an injury so it may take that long to see the full effect. I think based on what you are reporting now you are off to a great start. We are planning to treat Carter this summer and I hope we will be following in your footsteps. I think you made a great decision. Claire

All wonderful thoughts. I am compiling my list of questions to take to Dr. Latimer in DC next week. I will report back. I am also compiling a list of articles to pull from the hospital library. I understand your concerns about blood products but the risks are very slim. The blood product regulations are very strict and the specimen's are checked twice I think 6 months apart. Also, I think as with anything else you have to way risks vs. benefit. In my mind the risk of a longterm untreated encephalopathy outwiegh the blood product risk. Also, I know the central line is creepy but it is also a common thing in infusion/ICU settings and the risks are minimal. I thinks you just want to make sure you are doing it in a controlled setting with someone who knows what they are doing. I am happy to get any data (actual IVIG product risks) etc from my hospital's blood bank if you want more specifics. Carter is also doing better for now but I see signs every day his disease is still there and looking at his lab values freak me out. I also think that whether or not tics are present can influence the IVIG vs PEX choice. I am also going to see if I can track down an immunologist here and get a "curbside consult". We don't have any pediatric ones here but maybe he can help. I also put an e-mail into Eliana Perrin who did some of the initial research with Swedo and she is at UNC. She wanted me to contact her if we got to this crossroad to help us out. I am waiting for her reply but I will also let you know if she has any helpful advice. Claire P.S. You always seem to have late posts...please get some sleep.

We are headed up to D.C. next week to see Dr. Latimer. She has offered prednisone for three months as a start, IVIG, or plasma exchange. Knowing all you know which one would you do? Chronic steroids do not appeal to me due to the side effects. I am trying to go through the literature but it seems plasma exchange may be more effective. What do you think? Thanks, Claire I think that is partially true. The anti-neural antibodies are in the blood stream and if Kirvan is right, they are targeting GlcNAc which is a fairly common carbohydrate in the body and just happens to be on the exterior cell wall of the GABHS. Since the monoclonal antibody doesn't seem to be binding to other sources of GlcNAc but only to Tubulin and neural tissue, there's probably something unusual about the chain itself. In Kirvan's JNI paper, she shows that CaM Kinase II activation is reduced in the case of convalescent PANDAS and SC patients in 15 of the 16 patients. This indicates that by removing the initial antigen (presumably GABHS) the antibodies reduce and the B-cells stop replicating the antibody. If the blood-brain barrier opens in the convalescent state then the concentration is low and unlikely to cause CaM Kinase II activation. This seems to warrant keeping triggers from coming -- just to keep the antibody concentration low. In 4 of the 16 cases, the antibodies were still high in convalesence so that a disruption of the BBB would have then just let the already active antibodies in. So, it seems in both cases, lowering (and keeping low) the anti-neural antibodies would be the goal and hopefully reseting the B-cell to stop making the wrong antibody. Long way of saying, I'd still try to remove the antigen and keep the B-cells from producing antibodies if possible. Part of me is worried that the Neural cells themselves will be considered antigens by these anti-neurall antibodies and thus you don't need the external trigger. However, I'm hopeful that is not the case -- i.e., that the seminal event requires an external infection. But I agree with you that periodic pred or IVIG or PeX might be required. Hoping Leckmann publishes before 2011. Regards, Buster

Great news. We are headed to Georgetown to meet with a neurologist to get set up for IVIG or plasmaphoresis. Her name is Beth Latimer and she is wonderful if things get worse. We go the 29th. Carter is functioning but still with mood swings, tics, etc. He has had this probably 3+ years looking back so we are not well yet with antibiotics alone. There is a pediatric immunologist who comes to Charlotte once a month from UNC (we don't have one here). My hope is after treatment to get looped up with him for future needs.

I spoke to Dr. Leckman on the phone and we discusses the nature of PANDAS. Read the post auto-antibody neuronal cell signaling. It basically sums up what he said. This was started by strep but the antigen antobody complexes have attached to the vasculature in the basal ganglis. Anytime the child is stressed, the BBB opens up and the PANDAS flares. Knowing all this he said treating kids with antibiotics does not make much sense. The antibodies are the issue, not the strep that is why IVIG and plasmaphoresis works. I think these kids with PANDAS are genetically predisposed to get this and then the strep starts the process and a "trigger" (like stress, viral infection, vaccines) spirals the immune system out of control. It overacts to the strep and then you get PANDAS. He also said this data won't be published completely until 2011 but may serve as a basis for understanding autism and ADHD. Fascinating. My thoughts are antibiotics have a place to prevent reoccurance but do not treat true PANDAS.

Very impressive. This is exactly what Dr. Leckman at Yale just told me. This is wonderful stuff and really gets to the heart of the matter. This is a diseade that needs to be treated like an autoimmune disease. Antibiotics can help but do not solve the issues in most severe cases. Once, again...great work! Mommd

I really appreciate all the wonderful advice I get from this forum I could be wrong but I do think it is reasonable to suspect that IVIG or steroids will be needed periodically to treat "relapses" until puberty when the BBB closes. Carter's ASO had dropped to 950 (from 1750) and his antiDNase B rose to 1360 from 1320 after two plus months of antibiotics. his symptoms improved somewhat but his ANA is positive at +1:640 which just seems to point once again to an autoimmune course of treatment rather than antibiotics alone. Does anyone else have any info to add about really high ANA titers. Carter's kidneys are fine and all of his other (anti ribosomal protein, C3 and C4, etc) tests were negative.

That quote form him about playground medicine should have had you walking out the door. It is that attitude that gives us doctors a bad name. If this disease does not show us that we think we know a lot about medicine but we really don't, than I do not know what does. This is an AUTOIMMUNE disease and needs to be treated like one. The new research that is being done at Yale strongly questions antibiotic use for this disease and points to therapies such as IVIG. Sorry to be reacting so strongly to his response but it burned me up and I was not even there. As parents, we know our children better than anyone else and you need to find someone who values your opinion. I applaud my patients for taking a voice in their own health!!! Mom md

My son has that issues and it is from inflammation of the basal ganglia. He has had that issue since he got PANDAS. Soem kids get urinary issues but because it is from brain swelling you get a mixed bag of tricks. When the Basal ganglia is inflammed the messages to the brain can not be filtered. All messages are equally compeating. He does not get the message and doesn't have to go until the bowle movement is right there. The treatment for this whole thing is to treat the swelling in the basal ganglia. Drugs like Strattera treat symptoms not the cause. I am starting to believe that IVIG may be the only true treatment. Claire

I am not sure I why I have been lucky in finding neurologists who treat PANDAS but I would recommend calling and asking if they have experience before you waste your time and effort going to just anyone. I am thinking we are going to try the steroid burst and then consider IVIG if it works. Steroids are very benign and cheap and easy to do. It won't fix the problem at all but will let you know if the IVIG could work and also can be used to help confirm the PANDAS diagnosis. My neurologist wants me to come off azith around Aug or Oct which would be perfect strep exposure time. I almost want to see the flare, so aI can do the IVIG and move on. For whatever reason Carter seems more edgy and irritable the past few days. His ASO is still 950 although I know that may mean nothing. I am at the point too that if I can't get it covered I am ready to still pay out of pocket for the IVIG. We have new insurance which complicates the whole picture. I am also tempted to look into the tonsils thing but part of me feels if Carter goes to another new doctor and a procedure it may just add to him being overwhelmed. I don't feel like I have seen t much convincing data on the tonsils thing yet either. although, I just had mine out as a adult and if I could save my child that nightmare maybe it is worth it. My hope is this IVIG research that Dr. Leckman is doing helps make IVIG more accessible to those who need it. Claire

I totally agree with rest but you can't keep an 8 year old down and I feel the more I keep him out of sports, etc, the more "abnormal" he feels. I can't continue to live in a bubble and keep fearing minor changes in schedule, etc. I think I am mentally moving towards IVIG. I spoke to James Leckman at Yale and I agree on his points that antibiotics are not the way to treat an autoimmune disease. The antibodies are already there and will continue to cause a problem until they are gone. Has you considered IVIG?

We have one of those seats already! It is a great device. I appreciate your response and the blood brain barrier thing makes sense. I spoke to Dr. K and that is exactly what he said. I am thinking our next course is to try the steroid burst and move toward IVIG. I think this is the only true cure. I know the summer will be better and I am trying to deicide if I should stick with my docotr here who wants to wait to see a big flare on antibiotics (we see little ones every day) or if I should just move towards IVIG. The only benefit to waiting is this neurologist here might be able to get it paid for. I am getting to think though that it is worth the money to be done with this and close this chapter!

After talking to many of the pediatricians out there there are a lot of strep that is resistant to penicillin. I would try to switch to omnicef or azithromycin. We noticed improvement within 48 hours on azithromycin that we did not see on penicillin. We have not done IVIG but we are considering it. I want to be 100% sure this is PANDAS before I go there. We saw a new neurologist yesterday and he wanted to rule out a few other things like metal metabolism issues and other autoimmune diseases. Carter had a normal MRI and his ASO titer has fallen to 950 from 1750. I have spoken to experts and apparently once they get to the point of having tics they are harder to treat with antibiotics alone. My guess is we will be doing IVIG this summer or fall if this continues. Claire

Carter is on full strentgh azithromycin. He has an occasional mood swing but nothing like before. It is hard to know too what is normal and what is not. He continies to have some tics but they are subtle. Carter's tics were more chorea like with large arm movements. His are now slight shoulder rolls. I am sure I am the only one who notices. His MRI was normal and his ASO has dropped from 1750 to 950. His teacher has frankly not been too much help. His school work has not suffered at all and his handwriting has improved. Getting info from her is like pulling teeth. I am interested in trying the steroid burst just to see what it would do. I think it gives you an idea if IVIG would be helpful. I spoke to Dr. K and he said when a kid gets to the point where the tics are present they usually need IVIG to be cured.

My son Carter was diagnosed with PANDAS in February and is almost 90% improved now on azithromycin. We have been to multiple neurologists to confirm the diagnosis and they all agree. After 8 weeks of antibiotics he is almost perfect at home...no more mood swings, tics are gone, obsessions and anxiety is gone. For some reason though his teacher says she sees no real change at school. At the docotr today I caught a glimpse of I think what she is referring to. Carter was extremelly restless and could not sit still. He showed aome mild hyperactivity and impulse control issues too. After we left the stressful situation he was back to being my "perfect"child again. We even went to a restaurant and he was able to maintain self control. Has anyone seen this after treatment with antibiotics...when the child is in a "stressful" situation some issues come back but even that same day in an unstressful environment the restlessness is gone? Our plan is to stay on antibiotics for 4-6 months and do IVIG next time he has a bad flare. Thanks, Mommd