mamapanda

Thanks, everyone. Had the second screening today and will find out Thursday afternoon if he got in. She sounded concerned about a 106 degree fever he had in January of 2010. He spent 3 days in the hospital for it, but his ped was overly cautious as my son just 2 months earlier had spent 10 days in the hospital. I hope he gets in.

Thanks so much, Tmom. We are sure it's PANDAS but I would rather treat with antibiotics, which he does well on, than jump to IVIG. I'm just worried jumping to the big guns when we know antibiotics help might be overkill, and I'm honestly worried it may make things worse when he's actually not doing so bad.

My son only came down with PANDAS in March of this year. He had the "breakdown" and then got sick. Took him to the doctor, he had strep, got him on a 10 day course of abx. During those 10 days not only did the strep go away but so did most of his behaviors. Took him to see his normal pediatrician just a few days after stopping the abx, for his annual check up, and told her about it, and she said PANDAS. He went on another round of antibiotics which further cleared up his issues. Between then and June, his behavior started going down hill again. Took him in, sure enough, he had strep again. This time, I asked her to please consider a longer dose of abx but she would only do 14 days of clindimycin. Clindimycin worked amazingly and cleaned up so much better than the first abx, which I can't remember right now what it was. And it turns out it came with 17 days worth of doses . . oopsy on someones part but heaven for my son. Sure enough though, we're a week and a half out from stopping, and it's all coming back. His pediatrician, who initially said PANDAS, refuses to work with us unless he has a positive throat culture. I took him back in 2 days after finishing this abx because he was starting to get bad again and the throat swab was negative so she said its not PANDAS, that PANDAS is a one time infection, and that we need to treat him for Tourrettes/OCD. Not knowing what to do, I posted on an online forum and someone recommended to me to try and get into the IVIG study at Yale. We did the first screening, which he passed, and have the 2nd screening on Tuesday. He meets all of their published guidelines so I am sure he is going to get in - but . . do we really want IVIG at this point? From reading I see it is the treatment of last resort for a lot of kids. My son does GREAT on antibiotics, it's just that his pediatrician won't give him any. What do you all suggest? Is it possible that if we go the IVIG route we could be fast-forwarding his PANDAS when all he really needed was the abx??

I am going to get this work up done on my son. He was fine and healthy for the first 5 years of his life (but . . he stayed home with his dad and we lived in a remote area of the country where he wasn't exposed to much). Just a couple of months into kindergarten after moving to the midwest, he came down with pneumonia. He was hospitalized and spent 10 days in the hospital trying to fight it, and he nearly died. His lungs were engulfed and he had a pleural effusion before they started vancomycin, which killed the pneumonia. He's been sick on and off since, and had his tonsils out last spring and now constantly has strep. Very interesting information, thank you.

Does anyone here have their PANDAS child on a gluten free diet? I have been planning on starting it for myself, as I have a few autoimmune issues that are supposedly cured by it. It so happens I read an article today that these autoimmune issues are found in 25% of the mothers of PANDAS kids. So I'm thinking if a gluten free diet will help me, and if my autoimmune issues are somehow the cause of my sons, it might help him too, right? I was initially not going to put him on it, as its a very difficult diet to follow and once you remove gluten it can really mess you up if you accidentally ingest it or fall off the diet. My husband is not going on it and we eat fairly healthy anyway so I wasn't concerned with him not being on it but now I think it may help. Anyone?

Hi Minnesota Mom, sorry to hijack your thread, but can you give more information about the study? Are they still looking for participants? My son meets all of the requirements and I'm hoping I can get him into it. How long will you be away from home for? Do you have to travel to CT? It says they cover travel but do they cover a place to stay as well?? Thanks so much and best of luck to you.