Helpmyson78 Posted February 6, 2012 Report Share Posted February 6, 2012 I'm new here My son started having tics (motor and vocal) in 2009, he was in and out of EEG's, sleep studies etc.. The neurologist told us he had a tic disorder in 2010 and we accepted this for the time being and moved on with our life. The past 2.5 years have been a roller coaster to say the least. My son exhibits many signs that parallel PANDAS. I have created a "Health file" on every little thing he has been thru ...documented for any doctor to see. He has had croup 4 times since he has been born, each year....7-10 ear infections. Today he tested positive for strep having no symptoms whatsoever. In my gut I know my son has Pandas, and I feel at a loss trying to convince a doctor of this. The doctor gave my son antibiotics for ten days. My son has had major problems at night, he could tic for hours. For about 6 months he would only get 4-6 hours of sleep a night...we started giving him melatonin and he is able to sleep. Any advice or resources are appreciated. Link to comment Share on other sites More sharing options...
nicklemama Posted February 6, 2012 Report Share Posted February 6, 2012 Give up trying to convince the doctor you are currently seeing. Seek help from a doctor that has a good understanding of PANDAS. Unfortunately for most of us, that means traveling. Dr Kovacevic is closest to you, in Chicago. You could also do a phone consult with Dr Trifiletti. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 6, 2012 Report Share Posted February 6, 2012 Unless this doctor you're currently seeing is someone with whom you have a good, open, long-standing relationship, you will probably be wasting your time trying to "bring him 'round" to understanding and treating PANDAS. IF, by chance, you do have that kind of relationship with him, I would suggest pulling off some of the materials on the pinned thread here, scheduling a "Parent's Appointment" with him, share the information with him and gauge his response. Frankly, our pediatrician was reluctant and skeptical, also, but she still came around to the point where she was willing to prescribe ongoing abx (for almost 2 years) because she knew us, she knew DS, and she knew we wouldn't be belly-aching at her for no reason. I started off with her by giving her a copy of "Saving Sammy." I'm not even certain that she ever read the materials I gave her, but since she was willing to prescribe, I didn't care in the end. Here's the pinned thread with lots of info, papers, etc. available to download and share: Helpful Threads - Research, Etc. Also, here's a list of doctors around the country that other parents have seen and can recommend. I'm not certain off the bat that there're any in Minnesota, but you can comb through and see what you can come up with. Doctors We've Seen Who Treat PANDAS Hang in there, and trust your instincts! All the best! Link to comment Share on other sites More sharing options...
blakes_mom Posted February 6, 2012 Report Share Posted February 6, 2012 I'm new here My son started having tics (motor and vocal) in 2009, he was in and out of EEG's, sleep studies etc.. The neurologist told us he had a tic disorder in 2010 and we accepted this for the time being and moved on with our life. The past 2.5 years have been a roller coaster to say the least. My son exhibits many signs that parallel PANDAS. I have created a "Health file" on every little thing he has been thru ...documented for any doctor to see. He has had croup 4 times since he has been born, each year....7-10 ear infections. Today he tested positive for strep having no symptoms whatsoever. In my gut I know my son has Pandas, and I feel at a loss trying to convince a doctor of this. The doctor gave my son antibiotics for ten days. My son has had major problems at night, he could tic for hours. For about 6 months he would only get 4-6 hours of sleep a night...we started giving him melatonin and he is able to sleep. Any advice or resources are appreciated. Link to comment Share on other sites More sharing options...
blakes_mom Posted February 6, 2012 Report Share Posted February 6, 2012 I am also a Minnesota Mom. I sent you a pm. Bcm2 1 Link to comment Share on other sites More sharing options...
Iowadawn Posted February 6, 2012 Report Share Posted February 6, 2012 Ditto on convincing the docs. You MIGHT get a doc here in Iowa to get the diagnosing aspect of it correct, but he is way behind in treating. Make an appt. with Dr. K in Chicago. That is where we ended up. RUN, don't walk. PM at anytime. Dawn Link to comment Share on other sites More sharing options...
Helpmyson78 Posted February 6, 2012 Author Report Share Posted February 6, 2012 I was just at our clinic , my daughter is sick now ... I mentioned pandas to the doctor we saw, who the kids have seen before. She was open minded about pandas, and gave me tons of information about it, and a stronger antibiotic for my son. She said to follow up with her after all antibiotics are done. I am relieved and glad I mentioned pandas to this doctor, I never in a million years would have guessed she would have been this helpful. Link to comment Share on other sites More sharing options...
Helpmyson78 Posted February 6, 2012 Author Report Share Posted February 6, 2012 I was just at our clinic , my daughter is sick now ... I mentioned pandas to the doctor we saw, who the kids have seen before. She was open minded about pandas, and gave me tons of information about it, and a stronger antibiotic for my son. She said to follow up with her after all antibiotics are done. I am relieved and glad I mentioned pandas to this doctor, I never in a million years would have guessed she would have been this helpful. Link to comment Share on other sites More sharing options...
Jeremy Posted February 23, 2012 Report Share Posted February 23, 2012 I'm from WI near the twin cities in MN. Also looking for a PANDAS/PANS doctor. Any advice is greatly appreciated! Link to comment Share on other sites More sharing options...
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