feedjke Posted October 26, 2009 Report Share Posted October 26, 2009 Has anyone done the PET scan with Dr. Chugani? We did it Oct 16th and havent heard anything and was told by a staff member that there probable wasnt anything on the scan or he would have called. Did you have one done, what did it tell you or not tell you. This is driving me nuts. All along we have thought PANDAS PANDAS PANDAS due to the behavior coming in episodes and then the positive strep with each episode. This last episode was by far the worst and he had a negative gene probe? But his sisters was positive? My ped didnt really want to treat him but relenquished a mild does of antibiotic and it didnt work this time like it always has for the past 2 years. Not that I want my son to have this but I have that need for an answer to put a name on it and begin understanding it. If the scan showed no inflammation I dont know where to go????? Link to comment Share on other sites More sharing options...
feedjke Posted October 27, 2009 Author Report Share Posted October 27, 2009 anyone??? Link to comment Share on other sites More sharing options...
coco Posted October 27, 2009 Report Share Posted October 27, 2009 Hi, we have not done a PET scan with our daughter because of suspected pandas. Dr. K told us that this type of brain inflammation will almost never show up on a PET scan because it lies within the basal ganglia and is so difficult to find. I woiuld not rule out pandas based on that test. Have you done the steroid burst? I would also suggest long-term abx, augmentin or azithro, and maybe find an immunologist if your pediatrician is not going to help you out. Link to comment Share on other sites More sharing options...
feedjke Posted October 27, 2009 Author Report Share Posted October 27, 2009 Thats part of the problem, Im here in Ohio and have no one who will treat, let alone on our insurance. I'm convinced its PANDAS until you show me something that makes more sense. How do I find an immunologist in my area? Link to comment Share on other sites More sharing options...
T_Mom Posted October 27, 2009 Report Share Posted October 27, 2009 We have been told, by more than one doctor, that basal ganglia inflammation can only be detected on certain MRI machines of a certain high-power capacity--typically located at research institutions. I am so sorry you are going through this and I know it must be very difficult--your note says: All along we have thought PANDAS PANDAS PANDAS due to the behavior coming in episodes and then the positive strep with each episode. This last episode was by far the worst and he had a negative gene probe? But his sisters was positive? My ped didnt really want to treat him but relenquished a mild does of antibiotic and it didnt work this time like it always has for the past 2 years. Not that I want my son to have this but I have that need for an answer to put a name on it and begin understanding it. If the scan showed no inflammation I dont know where to go????? I really think the diagnosis is a result of documenting a child's "response to treatment"--Instead of looking for scan "inflammation" as a tell tale sign (our d's MRI showed nothing -- which is what 3 doctors had indicated!) For us more pertinent questions have been the following: Does my child have a positive reaction to antibiotics (OCD/tics/rages, etc. lessened significantly) -- (It is not typical for antibiotics to do away with OCD and tics, nor is it a typical use of antibiotics to turn a child's personality around and stop rages! (unless it is illness related of course...) Does my child react positively to a steroid burst? Have you considered a phone call to Dr K (www.webpediatrics.com) to run the situation by him? I'd be curious to see what he says-- Re: antibiotics, I'd find a different doctor who understands what you are up against--then document, document, document--video tape, etc. Best to you-- Link to comment Share on other sites More sharing options...
T_Mom Posted October 27, 2009 Report Share Posted October 27, 2009 Thats part of the problem, Im here in Ohio and have no one who will treat, let alone on our insurance. I'm convinced its PANDAS until you show me something that makes more sense. How do I find an immunologist in my area? If it was me, I would start by looking at the list of doctors that parents have made at the top of the ACN PANDAS thread webpage (under "helpful threads") and find the ones that are closest and call to see who they are--are they reputable, etc. You could try calling Diana Pohlman and ask her about doctors, email Beth Maloney for doctors names, track down the closest reputable doctors and call to see if they are a good "fit" and then get in the car-- I know it is a rotten deal and you may have to travel. Once you find effective treatment (even three states away) there is peace once more and a great reassurance that if it comes back you have someone to help you--find them now before a crisis hits--. I would also certainly try to get a local ped. to be "on your team" who is willing to think outside the box and be a teamplayer with a PANDAS knowledgeable doctor so you have someone local as well--I know it is easier said than done, we saw over 16 professionals along the way, they may not be anywhere near you. All the best as you continue-- Link to comment Share on other sites More sharing options...
feedjke Posted October 27, 2009 Author Report Share Posted October 27, 2009 T.Mom, I'm a little new to the board am I suppose to know who Diana and Beth are? Maybe its a stupid question or maybe its just too late to be thinking this hard? What about Dr. K do I just call and ask for an appointment? Im willing to drive Im just worried about being able to afford to get in the door. Link to comment Share on other sites More sharing options...
T_Mom Posted October 27, 2009 Report Share Posted October 27, 2009 T.Mom, I'm a little new to the board am I suppose to know who Diana and Beth are? Maybe its a stupid question or maybe its just too late to be thinking this hard? What about Dr. K do I just call and ask for an appointment? Im willing to drive Im just worried about being able to afford to get in the door. You can contact Diana Pohlman via the www.pandasnetwork website. She has a wealth of information and has been an invaluable help to us. Beth Maloney is the author of the book that came out in September Saving Sammy: The Boy Who Caught OCD. She has a website set up re: her book, a great tv clip you can view, and is also collecting names of doctors who have been helpful. (You have to see the tv clip if you have not--) It is tough as some of the doctors treating are not necessarily helpful or reputable (as I mentioned we have seen many.) You have to be your own advocate with the resources available of course, and interview on the phone. It sounds like you are wanting to get a different antibiotic--(from what you said in your post)--I would keep that goal in mind when you call and speak to the doctors -- to be sure you get someone that treats in the way you are looking for-- it is a start. I just want to encourage you that it can be done, and that you can always try negotiating prices BEFORE you see them, etc. Feel free to pm me. All the best-- Link to comment Share on other sites More sharing options...
Worried_Dad Posted October 27, 2009 Report Share Posted October 27, 2009 We participated in Dr. Chugani's PET scan research study back in March of 2008. He didn't contact us afterward: I actually e-mailed him to ask about the results. He was very gracious, promised to review the scans, responded quickly, and let us know that the scan was abnormal - showed inflammation in the basal ganglia. (What a shock, eh?) Dr. C was great for us. He responded quickly to all of my e-mail queries. When we couldn't get into our local pediatric neurology clinic (they kept stonewalling us), he personally intervened and contacted them. They scheduled us shortly after that... and we'd been waiting 9+ months for an appointment! (Unfortunately, they turned out to be "PANDAS skeptics" and did nothing for my son, but it was still a relief at the time.) For us, this just provided further confirmation that we were headed down the right path with the PANDAS diagnosis. As others here have mentioned, a normal PET scan or MRI doesn't rule out PANDAS, but an abnormal scan (especially if it shows basal ganglia issues) can corroborate things a bit. (Not to other docs, though, evidently: that PET scan result didn't seem to make a difference to the many local specialists who insisted our son did not have PANDAS.) Dr. C did also tell us that IVIG was an option if "things got bad" and that he'd seen good results for other similar patients. So if you can actually get him to take your son on as a patient, you might be in good hands. How far are you from Detroit? We're in SW Michigan, about 3 hours away. Hang in there, and best of luck! Link to comment Share on other sites More sharing options...
thereishope Posted October 28, 2009 Report Share Posted October 28, 2009 Where in Ohio are you? Last I checked Beth Maloney had no contacts in Ohio. She had some in Indianapolis. Email her for an up to date list. info@savingsammy.net Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now