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

I see that Dr. Murphy use to be in the Gainsville area that would have been great for us, not near as far as Tampa or Melbourne, does anyone know of a Dr. in the Florida pan handle? We are in the very most southern part of Alabama and was wondering which direction to go. Anyone have any advice on where I could go from here? Thanks so much, Lotafaith

THAT IS OUR BIGGEST PROBLEM! My ds15 is so sensitive to noises that we are pretty much confined to our house now. People talking can be the worse, people coughing and throat clearing. He has autism and PANDAS. I am working on gathering the right information to approach our ped. I have noticed him mouth breathing for several weeks now, his sinuses are somewhat congested but it seems as if maybe things are swollen possibly in his nose and ears? the dr. called us in amox and I called back and asked specifically for augmentin and the nurse said he wouldn't do it. taking him into the dr. office is a nightmare because of noise and he won't stay in the office. strep cultures are almost impossible to get done, especially blood work does anyone have any experience with mouth breathing and being swollen up in there nose? what did you do? Thank you, Lotafaith

mom I know this may sound stupid but please explain to me the ratios and how they work, how do they come up with number like 7 to 1? Lotafaith mom - how did you arrive at that ratio and dosage? i'm confused. i was so happy my boys were taking dr. sears b/c they like the flavor after much trial and error but it has a higher DHA. i don't really think i see a difference in behavior and attention. how long did it take you experimenting with trial and error? thanks.

does anybody have any recommendations about what ratio of the fish oils do our kids need? I have read where the kids with autism need something different in strength than other kids. what is everyone using on this site? Thank you, Lotafaith

can anyone tell me why does OmegaBrite help with children with autism? what if my ds has autism and PANDAS does anyone have a suggestion on what to take for Omegas ratio? 2 to 1 or 7 to 1? Thank you, Lotafaith

HI, This is where I was reading about the omegas and the ratios and the importance of it, I am still very much learning about all of this stuff and trying to order the right supplements. So many choices about different brands http://www.latitudes.org/forums/index.php?...aBrite&st=0 (My best pieces of hard-won experience after decades of figuring this) Lotafaith

I was wondering what does the majority of you use in the area of fish oils, I have read about Omega Brite a couple of times on this forum, is that a good one to order and use? Thank you, Lotafaith

Thank you sooooooo much, this is what I love to read the very, very most! I love to read what has worked or what someone has learned in specifics, it really gives me at least a good starting point for some things and a good adjusting point for others! Really, thank you I know it took a long time to write all that but I sure would love to start a thread of everyone writing something similar, I feel as if many of us could benefit, I know me and my family for sure! Lotafaith

Thank you Lotafaith 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 You can email her or call. She will send you a kit. The kit is $400.00. You can send it as a tax deductible contribution to the University for PANDAS research when you send the blood samples back to her.

Hi where can I find the info for the Cunningham test? thank you, Lotafaith