tag:blogger.com,1999:blog-15794806.post5397012573217785007..comments2023-10-23T14:26:18.726-06:00Comments on These Pretzels Are Making Me Thirsty: Lions and Tigers and Bearstrrishhttp://www.blogger.com/profile/11840209409286594625noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-15794806.post-72802630779788353552011-11-03T14:38:59.953-06:002011-11-03T14:38:59.953-06:00Hi Trish. My name is Sara Koster, and I live in W...Hi Trish. My name is Sara Koster, and I live in Westminster. I was just Googling "Voeller" and PANDAS as she is on Beth Maloney's page but never responded to an email I had sent her a year or so ago. My daughter has PANDAS and is being treated quite successfully, though I am still searching for a simple pediatrician or local doc of some sort to buy in to all of this and do the antibiotic treatment. I don't know about the day treatment program as I personally, after years of research and speaking with other parents, don't feel the psychotherapy or behavioral approach can get to the true root of this...simply the IvIg treatments and plasma exchange (if antibiotics alone do not successfully treat) can suffice. I have not heard anyone speak of Dr Voeller as being an expert in this at all, especially regionally, as she is not in any of the literature that I find (minus a one-sentence mention of PANDAS in an article of hers over five years ago). I would very much like to be in touch with you and hopefully find some local docs to help our kiddos. I do take our daughter to Dr Ronald Baumgartner at the Boulder Medical Center on Arapahoe, as he has seen the positive effects of antibiotics on PANDAS kids and will adhere to Dr Kovacevic's protocol (our doc from Chicago who does the IvIgs). Okay, obviously we need to just get together and chat! I don't know if my email will show up on here, but it's thekosters at hot mail dot com. Shoot me an email please! Take care, and hoping your journey has already been successful for you! SaraWestybloghttps://www.blogger.com/profile/01879581385300973847noreply@blogger.comtag:blogger.com,1999:blog-15794806.post-66139074521305758762011-08-17T21:39:56.133-06:002011-08-17T21:39:56.133-06:00Boy, am I excited and hopeful for you. What are th...Boy, am I excited and hopeful for you. What are then odds of stumbling upon the perfect fit MD?Nicolehttp://www.mynewnormals.comnoreply@blogger.comtag:blogger.com,1999:blog-15794806.post-57930293441540681732011-07-30T18:05:43.633-06:002011-07-30T18:05:43.633-06:00Linda, thank you for point out the "hope"...Linda, thank you for point out the "hope". That is quite true. I do have that now. This whole experience has been a struggle in and with western medicine. I avoided it for quite a while and then gave in. And it was a real tradeoff. The post about our experience in the hospital is coming....it really knocked the wind out of my sails. <br /><br />I hope you are enjoying life as it is now. I don't know about you - I am working very p/t for CU, from home. I do not miss my old life very much at all :-)trrishhttps://www.blogger.com/profile/11840209409286594625noreply@blogger.comtag:blogger.com,1999:blog-15794806.post-13306930159518998352011-07-30T18:01:21.235-06:002011-07-30T18:01:21.235-06:00Love you, Marie. Thank you so much for the suppor...Love you, Marie. Thank you so much for the support. We can use it right now! I've kept it all pretty close to the whatever....until recently, I didn't have what it took to tell people about what happened. I'm kind of getting it out there in reverse order. <br /><br />Even when it feels too hard now, I remember that it isn't as hard as it was in the hospital. So I appreciate that.<br /><br />Thanks for writing the note, it means so much to me.trrishhttps://www.blogger.com/profile/11840209409286594625noreply@blogger.comtag:blogger.com,1999:blog-15794806.post-59589068818584340252011-07-29T17:41:12.368-06:002011-07-29T17:41:12.368-06:00I'm hearing a sense of hope in this post which...I'm hearing a sense of hope in this post which is so good after what you've been through. I like Dr. G a lot but he is very Western-medicine, good for some conditions but not others. Finding the right specialist can be daunting (as both my husband and I have experienced), but once you find someone you relate to and who knows & understands your situation, well then you are making progress. Keep reading, keep asking questions, and keep listening to your intuition. I'm pulling for all of you.Lindahttps://www.blogger.com/profile/16149048815909082916noreply@blogger.comtag:blogger.com,1999:blog-15794806.post-46863053445077082572011-07-29T13:41:48.745-06:002011-07-29T13:41:48.745-06:00Oh, Trrish. Honey, I had no idea. Shit. I knew you...Oh, Trrish. Honey, I had no idea. Shit. I knew you were in the hospital with Adrian for a long time, but somehow I missed the last blog entry so I didn't know the specifics, and I didn't want to pry. Jesus. I am so, so happy you've found WINSi and Dr. Voeller. I am so hopeful that she is able to help. I know that it is insane-making to know something is wrong and not have anyone really hear you or validate your thoughts and concerns. I hope, with all my heart, that this is the one. I'm sending so much love and positive energy to the whole Pottersmith family. I don't know what I could do, but if I can do anything, I am here. Take good care, all of you.Marie Davisnoreply@blogger.com