mom md

We saw a neuropsychiatrist who diagnosed my son with "dysomnia, possible ressless leg syndrome" . His ferritin was 24. After one year we are up to 36. We did try Mirapex and it made him MUCH worse. One week later we got the PANDAS diagnosis and he staring improving with his sleep after azithromycin. After PEX he was sleeping perfectly. Mirapex is a dopamone agonist and that is why I think the PANDAS got worse. Wiyhin 4-5 days it was clear it was making things worse. I think the dysmonia is caused by the PANDAS. I do think iron supplementation is important as iron is a building block for the neurotransmitters but replacement takes a while.

We tried clonidine. I do not think it made a difference. My son can't sit either. He works at school standing and wanders around by the dinner table while he eats. He literally can not stay seated. He falls out of his chair too.

Absolutely. Before we were diagnosed two very good psychologists gave us the ADHD diagnosis. I never bought it and kept going to different doctors to see who would finally figure it out. We tried the stimulants for ADHD and of course they make things worse.

I definitely think it is a good idea to bring them into the mix. I also think as far as getting future treatments covered they can help carry some weight. A neurologist ordering IVIG may be looked at a little differently than a pediatrician. I also think they can help guide the immunologist as far as when to continue treatment with IVIG, when to stop, and what to try next with a relapse. I know it is frustrating. We are waitng too to get in with one here even though we know we will be doing IVIG soon. The immunologist wants his input and also thinks we may be ablt to get it covered if they both recommend it.

Let me admit I have no experience with PANDAS and gynecology but being that I have a son with PANDAS and I am a gynecologist...has anyone even seen what the birth control pill would do. We use it to "shut down " the ovaries and take the stress of hormonal changes out of the picture with some diseases. Day five of her cycle her hormone levels are really low and her body is dealing with the stress of losing blood...maybe if a child was placed on a continuous pill which prevented the cycle. Just a thought.

Even if the sublinguals get FDA approved it will not be for children for sveral more years (that is what my ENT said...I think he id on the board).

We have PANDAS so maybe I should not be replying but inly two shots sent my child into a relapse. The WHO issued a statement that immunotherapy should not be used fro people with autoimmune diseases. I know they do not know what caused Tourettes but if PANDAS and Tourettes are in any way linked I would not do it.

My immunologist definitely agrees that he has an autoimmune encephalitis. We did check his titers with his relapse in Nov and they were up to 500 and 700. We did not repeat the Cunningham number because I thought her lab was closed for the holiday. After the two weeks of steroids his number fell to 335 and 550 and we did repeat the ANA at that time and it was normal. We have not repeated the titers but he is on day 23 of a 30 day steorid trial. I think it would be interesting to see his Cunningham numbers pre-IVIG but I guess her lab is closed. I really feel though it would just re-confirm what I already know which is he has relapsed. Carter did fail his diptheria vaccine and strep (10 of 14) but his IGg levels were normal. My immunologist felt it would be hard to secure a CVID diagnosis but did agree that his immune system was deficiect. She did not think it would fit the insurance CVID criteria though. Getting Dr. Bouboulis opinion would be good but I honestly do not think we can travel right now to see him. We are all mentally and physically exhausted and I think we will be doing IVIG in the next week or so. Maybe a phone consult would be OK. I also can't see traveling up there for treatments? Where do you live and are you doing the treatments at home? My immunologist thinks we need IVIG monthly but is just concerned on how to get it covered. Carter had such a severe reaction to FFP and he has very big allergies so we need to do the first few in a controlled setting but after that she wanted us to do them at home. I am hoping I will get our answers next week but I did e-mail her today to update her so maybe I will hear sooner. I am sure she will run some pre-IVIG labs. I will give her Dr. Bouboulis's info to see if she wants to touch base with him. Thanks, Claire

Great responses. Thanks. I am getting one tomorrow. We are getting I think the "safest" one too without the exposed springs, etc. Maybe I will use it too for stress relief!!!

Some people have described it as jerky movements, but my son's looked more fluid like(like break dancing). We did see the piano playing too. I went to you tube and found a video I think went this all started. If i was smarter I could post it here but I am technically challenged.

We were actually almost 100% immediately after PEX but we had IV steroids in the hospital We had a perfect 4 months before he relapsed. He responded very well to steroids and was better in 4 days. Afterstopping the steroids he relapsed again. We are on the last week of a 30 day taper but we have not had the benefit if any that we saw before. I have nothing to back anything of this on but I wonder if we are somewhat improved from the PEX but just not back to baseline. I know most people have anxiety and OCD as the big issue and then often the tics and movement issues come later. I wonder if we are better but just now seeing more OCD/anxiety. In some ways the movementsa are easier to digest. This psychiatric stuff is very upsetting to watch. I think the problem is cellular in the sense that his T cells make strep antibodies when under any form of strep. It is like a broken record. I thing the IVIG will help reset this. We have no idea if insurance will pay and the thought of paying for it monthly for several years is unimaginable but we will do what we have to. He does notfit in a nice, neat category and I don't know if they will pay but they did pay for the PEX. Do you know how yours was covered? Also, you may want to ask his opinion on the IVIG subcutaneous injections. Also, where do you live and who do you see if my immunologist wants to talk to someone? Thanks, Claire

Thanks everyone for their thoughts. I contacted Latimer and she said she had seen the falling down things before. I guess that makes me feel better? I think we will be able to set up the IVIG for the next week or two. I know it may be something we need monthly. The immunologist even mentioned doing it subcutaneously at home each week. There is not a lot of PANDAS data on it (in fact there is none) but she said you tend to get a better steady state level which is good. It is a weekly infusion that takes 1 1/2 hours and is done at home. I think they want to do the first several in an infusion center but that may be on the horizon too. I think the only issue in kids is you need some belly fat or thigh fat to inject the pump in and my son does not have much. We see the immunologist next week which is good. i will keep everyone posted.

Given that my son's issues are primarily movement based initially, we have always allowed him to be fairly physically active because he seems to "need" to move. It is like he needs to get it out. Even after PEX they did not limit his activity except for four days. We were thinking about getting the kids a trampoline for Christams. Our friends have one and the kids seem to love it and be outside more. Despite the obvious safety concerns of a trampoline, do you think the repetative jumping on occasion could delay recovery? They said 5 minutes of jumping are equal to the calories in running a mile. Do you think it could increase his health or make things worse? Strange question but I do not know. Given that it is getting cold here my guess is they won't be on it for real long periods.

Very eerie. Carter was origionally in the SC range and given that diagnosis. He was in the SC range on Cunningham's study too. Very strange. Just when you think you are starting to get a handle on what to expect.

She was still very positive that this could be treated but felt that we still do not know what recipe will finally cure these kids. She also said each child is different. Some need antibotics alone and some need PEX and IVIG. She said she would also still leave repeat PEX on the table in the future if needed. She seemed eager and willing to follow this through till we were cured but said it may not be as simple as we thought. We all agree though he is a 4-5 on a scale and pre-PEX he was a 8-9 on a scale. Maybe we are just sweeping up the leftovers? I think the movements thoough are somewhat easier to digest though than the OCD.

Before we knew we had PANDAS we found Neurontin to be somewhat calming for our son. He would take it at night to wind him down when he had awlful insomnia. It is pretty safe and may be worth asking about.

Traveling to DC on my own and catching planes, trains, cabs, buses, etc. was scary too with my son. Hang in there. We are all cheering for you and you are definitely doing the right thing. Treat them and yourself along the way and make it fun.

I would have your doctor there see if they can do plasmaphoresis in your PICU. My PICU offered to do it here in Charlotte but I felt it might be better at Georgetown because getting there was not a huge deal. Often PICUs will treat local sickle cell kids one day a week with plasmaphoresis . The local red cross often supplies the machine and team. To do it three days in a row is not a huge deal it just means the team shows up three days in a row. My son weighs 62 lbs and the whole procedure only took 90 minutes a day. I would trust any plasmaphoresis team that does it every day if my child was in the PICU. Also ask if your hospital will accept an order form Dr. Latimer which some will do if the intensivist is the admitting doctor. Then the two can talk on the phone and make it happen. Also, that way if you need follow-up IVIG the local hospital is familiar with her and your case. My local peds hem/onc doctors were willing to do IVIG here if Latimer faxed an order. Just a thought but definitely worth investigating.

We are still seeing some weird behavior and are planning to do IVIG this month. The school called today and said my son (age 8 ) fell in a mud puddle and would be coming home VERY dirty. They just wanted to warn me. He was completely covered when I got him with mud and said he fell in a puddle ten times. The teacher then e-mailed me and said this week he has been "falling" out of his chair and to the ground when they a have been walking to other areas. He gets a big laugh from friends and continues to do it despite being told he can't. They have been wonderful dealing with the situation and knew it was out of his control. When I asked him he said there was an imaginary rope attached to his back and it pulled him certain directions and bounced him other directions. He saw a bunge jump segment on the TV a few weeks ago and I wonder if that planted a seed. He started crying and said he could not control it. When I asked him what else his brain was doing he said it has been telling him to do things 123 times. Very sad. I know we will do IVIG this month but we need it ASAP. He is in no way as bad as he was pre-plams exchange but now appears to have more OCD and anxiety than I remember from before. He is sleeping well though so some parts are better. He is still on steroids and has 8 more days of a thirty day taper. We spoke to Latimer yesterday and we are planning to move forward with IVIG. We will start with one and go from there. She warned us it may take a few and even repeating plasma exchange was not completely off the table. On a side note a mother form our school called with the info that her daughter, age 6, has PANDAS. I feel cases are coming out of the woodwork.

Retrospective studies do not carry near as much weight with the medical community as prospective double blinded studies. I am sure this is why Dr. Murphy wants to do it this way.

Just got off from a phone consult with Latimer and she said that what she liked is they talked about it like it was a real disease. She admitted they are still learning how to treat these kids but that people are starting to listen and take notice.

Does anyone know the approximate time?

Stress can also open the BBB and make the antibodies that are in the system react and cause symptoms. Maybe Monday mornings are somewhat stressful so that is when you see it. My son has way more issues at school than at home. He can be at a doctor's appointment and have full symptoms and one hour later at home seem fine.

Wonderful! Please keep us posted.

Wondeful job...do you think we could get you hired? To have someone on the inside there might be just what we need.