mom md

I am planning to take my son to an immunologist in Sept so I was interested in your visit. The one we are seeing is "interested" in PANDAS but I have no idea if she has any experience. We are done with PEX and doing great though so I am really just going to pick her brain. I want to explore the allergy issues and try to see if I can help build up his immune system. My son has several significant environmental allergies butI want to explore the diet ,etc. I did hear from a doctor today that the only real way to test for a gluten allergy is through a stool test so my guess is he may be right on that point. My hope is that even though she has no real expertise with PANDAS I can educate her and if we ever need treatment again to see if we can do it in Charlotte. Latimer was great to confirm the diagnosis and execute treatment and I would definitely go there again for treatment but I think I would sleep better if I knew someone in Charlotte could handle this if needed. We are not a candidate for IVIG unfortunately and will need PEX due to an allergic response to plasma proteins. One of the main problems with this disease is it crosses over so many specialties...neurology, immunology, psychiatry, infectious disease, etc. I have considered seeing an infectious disease doctor to to mange the long term antibiotic issues. It is almost like you need a doctor in each field to put thier two cents in in order to figure it out!

I have been thinking about you and so glad you came up with a plan. I think it is also good that Latimer seems to be tayloring each treatment recommendation to each child and making sure that IVIG and PEX are truly going to be beneficial before proceeding with them. She does not appear to have a cookbook response but is considering all factors. I also think it is interesting that she wants to maniupulate his meds. My guess is that as head of Neurology at Georgetown she saw a lot of extreme cases and may be very helpful in her recommendation to tweeking medications. She offered us steroids but offered us a three month trial which she felt would only be temporary and then we would be looking at PEX vs IVIG. She felt my son would need multiple treatments with IVIG vs 3-4 days of PEX. My son is doing great since the PEX and she was right on with the recommendation. I still see occasional rare tic and chorea movement but they are fleeting and last only a millisecond. He had a little seperation anxiety the other night but it was manageble. He is 95% now and getting better each day. His case though appears to be sydenham's which has a clearer treatment path. She also recommended antibiotics until adulthood (maybe up to 25). I know it is frustrating to not have gotten the IVIG but my guess is she listened to everything you said and wants to make sure it is the right thing. I also think to see his response to the steroids will let you know if proceeding with IVIG will be the right course. I know there are a lot of different ways to do a steroid taper so I think the one she perscribed sounds good. Please call me if you have any questions. Claire

Charlotte, NC James, Lee, MD Piedmont Neuropsychiatry, (he is the one who diagnosed it) James Nelson, MD Neurologist Chapel Hill Eliana Perrin, MD Professor of Pediatricis Chapell Hill (did some of the origional work with Swedo)

There are no pediatric immunologists in Charlotte. There is one that comes to CMC one day per month from UNC. If you want I can get yoou his name.

Still waiting to hear. Dr. Latimer seemed to think it would not be a problem. The hem/onc doctor's office called today and said they were trying to get in touch with Latimer's office so they could code it the best way possible so it would get paid for. Usually with hospital admissions things get pre-authorized but with Latimer being out I don't know if it got done properly. I will keep you posted.... Claire

No. The year before he was having issues and at that time we were trying to figure out if it was ADHD, restless leg syndrome, etc and he had two big sinsitus infections that were treated with Augmentin and steroids. Both times I told his teacher to put her seat belt on because he would be wild on the steroids. Both times she told me it had the opposite effect and he was more focused and less impulsive at school. Dr. Latimer and I agreed that that was a steroid burst we just did not know it at the time. Also, I think she though the PEX would solve the problem.

We came home last Thursday night after finishing three treatments of plasmaphoresis at Georgetown Hospital. We were admitted Monday and had the catheter placed in his femoral region under sedation. We started plasmaphoresis that evening but after a long day of not eating or drinking much we had to abort the procedure after we were 1/3 of the way through. Carter started having leg cramps becuase he was dehydrated and also had some eye swelling and wheezing. He was hydrtaed overnight and then after lunch on Tuesday we tried the plasmaphoresis again. After 20 minute he began coughing and had some eye swelling. We stopped once again and determined he was the 1% that has a severe allergic reaction to the plasma proteins. We were using albumin serum which has less proteins than FFP but he still reacted. He then was given more benadryl and started on IV steroids. He got through that treatment but they sedated him a little with oral versed just to relax him. The steroids were kept on board for the next two days as we finished the 3 courses of plasmaphoresis. Each treatment he was given versed to relax, benadryl(25mg) IV and alsong with the solumedrol(steroid) and he did fine. The steroids made him not sleep and a little cranky but he was able to tolerate it. Turns out it was a good idea we were in the PICU. The hem/onc doctor there also said he was not a good candidate for IVIG in the future because it has much more plasma protein in it and he would be even more allergic. His IGA levels were fine going into this so his reaction was a suprise. She did say that PANDAS kids were different (their immune systems were over-reactive) and they may react differently to these treatments. His ASO was 1750, fell to 950 with antibiotics and was under 100 after we were done. The first few days were a little hard as he came down from the steroids but I could still tell he was already better. The first night home he sat at the dinner table and ate sitting. This child had chorea and COULD NOT sit in a chair. He did not get up once. I was floored! This has continued every night since. He is calm, patient, respectful...and basically perfect. I slept with him Monday night to see if he moved at night. Prior to the plasma exchange he aroused 14 times an hour from movements. He did not kick me once. Once again, this was unheard of. I asked him if he felt fdifferent and he said"yes, I feel just better". I saw a millisecond of a tic or two the first three days home but have not seen one since. As Dr. Latimer said..."he will be cured. You will see results almost immediately". She was right. We chose the PE over IVIG because she felt his titers were so high it would take 2-3 treatments of IVIG and maybe 6-9 months to cure him that way. After this long road I wanted to be done and let him recover over the summer and be ready to have a good year in 2nd grade. Please let me know if anyone goes this route because I have some tips on how to time the line, 1st treatment, etc. The doctors at Georgetown were wonderful. The hem/onc doctor said she wants to team up with Latimer and study this disease. I made it a point to educate every resident I crossed paths with while I was there too. I was exhausted though after living in the PICU for three nights and dealing with a kid bouncing off the walls from the steroids. It took me longer to recover than my son!

We have not seen Dr. Latimer at all but the intensivist saw her last week and got the plan together. We are supposed to do three PE treatments. Unfortunately we had to abort the onelast night. He had his femoral line placed at 2pm last night and then the meds that they used to sedate him made him nauseous. They tried to do it sonner but they had a hard time starting the mainline because he was so dehydrated. (Note to anyone who has this done, get a early am time to put the line in). We scheduled it loast week and got an afternoon time. They did not start the PE until 7pm and he had some wheezing and hives after 20 minutes(apparently this is a common reaction) and they were going to give him albuterol and more benadryl and then he started having severe leg cramps and screaming. His Calcium was fine and I think he was just severely dehydrated when we started. The lady running the PE said they like the patients to have a big breakfast before they do this. We hydrated him all night and will start at square one this morning. I will keep you posted.

As I lay on the cot in the PICU next to my 8 year old son who is getting plasma exchange for PANDAS I have to say this poem made me tear up. I am trying to hold it together this week so I am not going to read it again for fear I may crumble. I have to say though that after seeing some of the kids here today...if I put my problem in the middle of the room to compare woth the other parents here...I would gladly take mine back.

I would definitely stay on 250 a day. I have a feeling too he could relapse in the fall during strep season. I would also plan toconsider IVIG if he does relapse on antibiotics. Also, PANDAS is RF.

That is what Carter's teacher said he was doing. He was getting up from his chair and "dancing"around the room. He also was shouting out which we finally realized wer vocal tics. His "dance" moves were very impressive. Completely involuntary.

Yes, whole blood is fine.

We did 10 days of amoxicillin in March with no change. We then switched to Zithromax and in 4 days my son's snake like break dancing moves settled into simple finger rolls. He was having sever insomnia, mood swings, tics, OCD, anxiety, and after 5 -7 days these symptoms were almost gone. I agree...watching it was both amazing and confirming that this was caused by a bacteria. We are at 90% now but still see some symptoms of chorea each day although they are much milder. His antibodies are still in the top 2% of all PANDAS patients and he meets criteria for SC so we are planning on plasma exchange next week.

hanks for the encouraging words about Geoegetown. Dr. Latimer's office called today and in addition to Latimer being ourt, the Hem/onc doctor managing the plasma exchange is going on vacation for three weeks. I spoke with the head of the PICU today and he was great. He said the head of hem/onc would be in charge of Carte's treatment and that he thought we could still plan on next week. So far I have been very impressed with him. I am not sure about the blood test and you may want to call Dr. Cunningham's lab. My son's titers were still in the SC range even afer 12 weeks of antibiotics. I just wanted to get a baseline before we did the PE. It turned out to give me just more confirmation that I was doing the right thing.

I know they phrasev "brain damage" was upsetting but it makes sense to me that you would see this with PANDAS which is an encephalitis. It is brain damage but luckily can be reversed if treated. Very interesting. It just shows that when the brain is involved the symptons you see is a mixed bag.

I would recommend getting the CAM kinase II lab done through Dr. C lab. I do not think getting it done elsewhere would work and the results may not be valid. I would call her lab and talk to someone. They are very accessible. Dr. Cunningham will even e-mail you back herself. I am sure they can accept blood from another country. Also, I think if left untreated (with IVIG or plasma exchange) SC may resolve in a few months but also may last for for several years and result in permanent movement and behavioral damage. As you can see it is not the step now causing the symptoms but the antibodies to the strep in the blood. The only way to clear those is IVIG or plasma exchange. Any stress (including vaccines, a viral infection, and in my son's case even anxiety) can cause a flare. It does sound like PANDAS but at the SC level. iIknow this is overwhelming but there is a treatment and we have been making great strides to get this reconized as a disease. They have even recently started doing IVIG for this at Stanford. As Dr.Cunningham said at a recent lecture...these patients are coming out of the woodwork. It is unbelievable.

I am sure her lab has set the control so you can compare values. If not her research would not be worth anything. I am planning to call her lab this week and get someone to walk me through it. In reply to the previous response, the blood work basically tests for the actual neuronal antibodies that are doing the damage in PANDAS as well as confirm if the child has PANDAS. Normal children have normal CAM Kinase activity and children with basic OCD and Tourettes have lower CAM Kinase II levels. This is very important because it can seperate out the children that have OCD and Tourettes and whose disease has just gotten worse by a strep infection vs those who was caused by strep. It also can help diagnose the children who actually do have PANDAS but have normal ASO and antiDNase B titers. It shows that these titers are not the one actually doing the damage. I think it can also be used to document and comfirm flares in the future and guide parents with treatment. Unfortunately, Dr. Latimer has had a family emergency and we are waiting to see if we can still do plasma excahnge on the 6th of July. The intensivist is trying to see if the hematologist will run the show in her absence. If we have to cancel and postpone it for another month or so it will be awlful. We could start from scratch and go see someone else but that scares me. The intensivist said they did a kid last week at Georgetown so I would rather do it there. They seem to have it down. My son is a beetr candidate for plasma exchange rather than IVIG because his titers are so high and they think he has had it for so long. They said with IVIG it would take multiple treatments and probablu 6-9 months to cure and with PE it would only take 3-4 days. We need to get this done this summer so we can have a normal school year.

We just recieved our results today and Carter's CAM Kinase II % was 201% which s very high and in the SC range. It was 101% above the basal level. It then says 233% plus control (it is confusing). I am not sure if I am looking at the 201 or the 233% as his result? She marked it on the graft at 201 in the red SC range. His anti-lysoganglioside was very high, his anti-D1 and anti-D2 were slightly elevated and his anti tubulin was elevated. SAomeone wrote out a nice description of the different levels and what they mean but I can't seem to find it. It all makes since though and makes me relieved but also a little sick to my stomach that his levels are so high. I also can't believe I went in and told a nueologist he had SC and hesaid, "no he did not and laughed". We were planning to go for plasma exchange on July 6th but Dr. Latimer has had a family emergency and we may need to post-pone. The intensivist said we could still do the PEX but we need Dr. Latimer to tell us when stop. Does anyone know with PEX what level of antibody they get it down to before they say it is considered "cured"?

PenVK 250mg bid I think. She follows the rheumatic fever protocol I think.

Dr. Latimer wants to keep my son on antibiotics until he is an adult. She said she has seen someone with PANDAS reoccur at 24 and some thoughts are to keep these kids on until 25. She said the rheumatic fever recommendations may increase at some point to age 25. I am goingt t call my friend who is a pediatric ID doctor in Houston and pick her brain. I will post what I learn.

Yes. My guess is though we will need to see her once a year in followup.

Very interesting! Yes. He is my only child (of three) who had a reaction. He got the vaccine and exactly two weeks later it was Halloween and he was EXTRA cranky that night. I took him home and in the bath saw about 7-10 chicken pox vesicles on his head. It was a mild case of the chicken pox, but he had vesicles and fever.

Just to let you know, we saw Dr. Latimer last week and we were very impressed. Good luck.

They(Leckman, Latimer, etc) are planning to rename PANDAS and the name include autoimmune encephalitits. PANDAS makes you think of something happy, and there is nothing happy about this disease.

I think any lab will probably draw the blood since it is for a study. I had no issue. I will be anxious to to see what our CAM kinase II levels are. Maybe it will solve the SC vs PANDAS question, or at least help. Claire