mylittleangel Posted October 30, 2009 Report Posted October 30, 2009 Faith .... your in box is full! I need to get my son tested for PANDAS ASAP. He has had tics since he was 3, along with too many ear and sinus infections. He turned 6 today and also developed a screaming tic.....a birthday to remember! He has had a wicked sinus infection for the past few weeks and since then has been going down hill fast. I do not want to wait any longer. I almost put him on medication until I read that Faith's son had PANDAS. I need to make sure this is not my son's problem before I go down the dark road of medication. Please, somebody tell me how to get into the Cunnigham study and get the Cam Kinase test? Much thanks, Chloe
peglem Posted October 30, 2009 Report Posted October 30, 2009 Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2177 email: madeleine-cunningham@ouhsc.edu Email Dr. Cunningham with a brief history of your child's symptoms/illness and ask if he can be included in the study. Its pretty simple!
matis_mom Posted October 30, 2009 Report Posted October 30, 2009 Faith .... your in box is full! I need to get my son tested for PANDAS ASAP. He has had tics since he was 3, along with too many ear and sinus infections. He turned 6 today and also developed a screaming tic.....a birthday to remember! He has had a wicked sinus infection for the past few weeks and since then has been going down hill fast. I do not want to wait any longer. I almost put him on medication until I read that Faith's son had PANDAS. I need to make sure this is not my son's problem before I go down the dark road of medication. Please, somebody tell me how to get into the Cunnigham study and get the Cam Kinase test? Much thanks, Chloe Here is the info... Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2217 email: madeleine-cunningham@ouhsc.edu ________________________________________ They will get back to you pretty quickly, I seems they are trying to get everyone taken care of before Nov. 12. Best of luck, Isabel
faith Posted October 30, 2009 Report Posted October 30, 2009 mylittleangel, hi, sorry, I have been out all day and just got your message. sorry, things have gotten bad. I've sent you some info over pm. get back to me and let me know what's going on. Did they give your son any medication or antibiotics for the sinus infection? regards Faith
Char Posted October 30, 2009 Report Posted October 30, 2009 mylittleangel, Hi, sorry to hear your sons tics have increased. I had the Cunningham test done for my son. I was really shocked when my sons Cam Kinase score came back as 137 and puts him in the Pandas range. I am glad now I know and now I can start the right treatments for my son. I had mixed feelings about the results. I was glad to finally know but mad that my son was dismissed by doctors who said, my son just has tics and focus problems. But don't worry they said, he should grow out of them. That makes me so MAD!!! You should get the Cunningham test done maybe, it will give you some answers too. The Cunningham research team is awesome!! They are all kind and helpful.
BethM33 Posted October 30, 2009 Report Posted October 30, 2009 What is the Cunningham test and Cam Kinase test???
T_Mom Posted October 31, 2009 Report Posted October 31, 2009 What is the Cunningham test and Cam Kinase test??? Welcome Beth--sorry you have had to find this forum, but it is a caring group certainly. First: Go to www.pandasnetwork.org and read, read, read-- you will have much explained there that is crucial for parents to understand. You can also search on this forum for previous topics and that may be the best way to learn about the Cunningham tests--and what they mean. You can also search and click on a person's name and then go to their "website" and read all of their posts by going to the box on the left and clicking on options, then pulling up their posts-- Re: Cunningham's tests I would recommend doing this with the father named "Buster" -- search what he has written and it will help you understand __(certainly better than anything I could add:) All the best--
momofgirls Posted October 31, 2009 Report Posted October 31, 2009 Hi we live in connecticut and see dr bouboulis. He is an immunologist and is a very kind doctor just outside New York. Dr Latimer's prescription may be just fine for you but it seems from what I am reading, my daughter's dose is pretty high for her age and weight.
momofgirls Posted October 31, 2009 Report Posted October 31, 2009 My previous post was directed to Tmom. I have not figured out this forum and posting correctly yet so my comment seemed out of the blue! Tmom you sent me a personal note right? That was suppose to be an answer to your question about who are doctor was. Sorry everyone else for seeming random.
momofgirls Posted October 31, 2009 Report Posted October 31, 2009 Ok I think I need ivig now too! I wrote in my last post to tmom..."Who ARE doctor was" I meant to say "who our doctor is". Ok I won't post anymore tonight because I need sleep!
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