Lotafaith

For us it is like trying to rope a bull! LOL! Lotafaith

Has anyone here dealt with having a teenager that you knew they were going to be very difficult to test and even couldn't think down the road to restraining for IVIG but knew that they would probably benefit greatly from the testing and IVIG? Any experience of suggestions of how to handle a child that is 158 lbs and very strong and doesn't understand what is going on.? That is my only hold back is how to approach this and get started but am not sure how to handle my ds that is 15yr. Thank you for any experience of anykind, Lotafaith

My mom using one and has to clean her equipment daily with vinegar and water, they said that would keep it clean enough interesting Lotafaith

sorry very, very new to this, what is PEX? Lotafaith

Has anybody tried Gabapentin? Psych Dr. suggested this to us just wondering if anyone had any experience with it? What about Buspar? Lotafaith

wow, I did not know that adenoids could grow back. I can tell that ds adenoids are swollen, he does alot of mouth breathing but because of noise sensitivity I couldn't even get him into a dr. office right now, he is on Keflex that I put him on (I had in the frig) and I can tell that the sinus infection symptoms are getting better but the swelling still seems the same. does the ent dr just have to look up his nose to tell what is going on right? Lotafaith

do antibiotics (kelflex) help with swollen adenoids? Lotafaith

Does antibiotics (keflex) help with swollen anoids? Lotafaith

Never tried ativan; did have one bad experience with Abilify, never to be repeated! We also had a very, very bad experience with Abilify, it was the worst! Lotafaith

we are on zoloft right now and have been for a long time, all the other meds we have tried have had awful side effects. Has anyone here ever tried anything like ativan? I started him on my kelflex that I had from a past sinus condition and after three doses he is calming down somewhat. we have to see the psyc dr wed and I am thinking maybe we need something to just take the edge off for the moment until I can figure all this out Lotafaith

Hi, I have a son with autism/OCD/PANDAS, at this point we are looking at giving him something just help take the edge off, he doesn't even want to leave the house because of noises. Can anyone tell me what has worked and what hasn't for anxiety? Thank you, Lotafaith

I for one live in pa. so we went to see Dr. T this past weekend. I think most do phone consultations from what I have heard. Thank you TiredMom, can't figure out how to do this and who to visit, everyone seems so far away. Do you know if any of these dr.s will order test before you come in and visit? Lotafaith

I had both, ds was 36 wks when delivered but tried to come at 30 wks I also had with my dd as well but she has not had any problems with PANDAS but ds has and autism Lotafaih

It looks like most everyone here uses the Dr. in New Jersey or Florida, how does it work for Dr. Murphy, do you go and see her and then will she do consultation on the phone? Do most of these dr. do consults on the phone or do most of everyone here live within driving distance of them? Lotafaith

HI, Alex who is dr. K? where are they located? Where is dr. T Located? Thank you Lotafaith uote name='Alex' date='Feb 23 2010, 10:45 AM' post='57203'] Noelle, Don't know about Biaxin, but as far as relationship strrains, of course. PANDAS causes unbelievable stress. Just hearing about your daughter's rage after school made me yell at my wife. Just kidding, but obviously the emotional strain is overwhelming. I think parents of PANDAS kids would benefit more from counseling then the kids themselves. As far as school, we told ours. My son's teacher is great, read 'Saving Sammy' and other PANDAS info and brought up the topic at a staff meeting. He looks out for our son and keeps us posted of any behavioral changes and any strep in class, and gets my son to use the hand sanitizer as often as possible. Back to the Biaxin, good luck. Comparing Dr. Trifiletti to Dr. K, Dr. T seems much slower to go to IVIG where as Dr. K says without IVIG, no PANDAS cure. He says it is necessary to get rid of the autoimmune process causing the problem. I believe Dr T has been tracking some PANDAS case for 10 years or so and I asumme he has seen what he believes are some cures from antibiotics alone. I'd love to hear some examples. Good luck, Alex