DebC
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Posts posted by DebC
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I did find my data. You are absolutely correct, Buster! There were 2 in the same zip code and my pin happened to be behind the first.
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When I checked the map, two of my answers were flipped. They were "Sudden Onset" and "Fever". It was probably an error on my part, but Buster asked if I could post to see if anyone else had the same problem once they checked their results on the map.
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It's 11:59...please...the celebration will soon be upon us, right?!?!!!!!!
I think so! The site is now open to only accept applications and you can no longer vote. I looked at 11:58 and we were still in 6th!
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My mom wanted me to be a doctor....there have been many, many times that I've regretted not taking that advice!!!
I don't NOT wanna be a doctor, I'm just not sure what I want to be yet! I think I want to be an editor for a publishing company. It sounds strange coming from someone who types "wanna", but I love language, haha. At the same time though I also find a lot of random things really interesting, like parasites & pharmacology.
Who knows. I'm infinitely curious, there's no doubt about that, so I'll be able to pick something & be happy with it when the time comes.
You are a "go getter" and will excel in anything you choose to do!
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OMG! The tears just won't stop. I have no words. This song is so poignantly appropriate. We are 5 weeks post IVIG and when I see my pale anxious little guy I wish I could transer the Pandas on to me. I swear I even got mad at God once and prayed to satan to sell him my soul in exchange for my son's life back. I still would willingly do it. He's had it since he was 22 mos as per Dr. K and we just found out when he had a massive classic pandas episode in March., hes 8.5 now. So many episodes over the years for different things. We treated symptoms- speech therapy, sensory integration, etc etc but never even knew about the cause being pandas.
Jodie
When I first heard this song several months ago, it hit home. However, for me, it was my conversation with God and me telling him that even though at one time I was mad when our daughter first became ill, I had come back around but still wanted to know what He wanted from me.
While I'm being slightly philosophical, here's what I finally decided was wanted from me (I begin speaking about 4 minutes in, once I've been introduced): http://www.watersedgefrisco.com/video/05232010.php
Oh, Deb! What a wonderful spokesperson you are for us all! I can relate to those struggles with faith... what did I do? And, Okay, really, I've had enough now-moments.
Way to go on the Pepsi Refresh plug! The flock has heard and responded!!
Thanks! Our pastor sent out an e-mail to the whole congregation the day I spoke with a voting link (400-500 members or more) and then sent out another reminder with a long explanation of the illness and a link to vote this past Thursday. I am so grateful that they have been behind us on this! My gut instinct when asked to speak was to say "no" as I don't like public speaking. However, I knew that I was being asked for a purpose and agreed to do so. I'm so grateful to have been given that opportunity!
Deb- do you think the flock voted today??? I know #6, we're good...right????
Jag10 -- I think they did! In fact, our pastor texted me a bit earlier in the evening to see how I was doing and to let me know that everyone was voting. They have been a huge support and are letting the Dallas support group use one of the classrooms for our meeting location. They are an amazing group of people! I love it when I walk into the building and members approach me and say "We are at number 6!" They feel like they have become a part of this movement as well!
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I've been checking all day. My kids think I'm insane. I've been trying to clean the house in preparation for our son's preschool class to come over tomorrow to swim (he was in a class of 5, so not a huge group) but I didn't get nearly as much done as I would have liked since I had to keep coming back to my laptop to check our rank!
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So happy to hear you are making progress!
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OMG! The tears just won't stop. I have no words. This song is so poignantly appropriate. We are 5 weeks post IVIG and when I see my pale anxious little guy I wish I could transer the Pandas on to me. I swear I even got mad at God once and prayed to satan to sell him my soul in exchange for my son's life back. I still would willingly do it. He's had it since he was 22 mos as per Dr. K and we just found out when he had a massive classic pandas episode in March., hes 8.5 now. So many episodes over the years for different things. We treated symptoms- speech therapy, sensory integration, etc etc but never even knew about the cause being pandas.
Jodie
When I first heard this song several months ago, it hit home. However, for me, it was my conversation with God and me telling him that even though at one time I was mad when our daughter first became ill, I had come back around but still wanted to know what He wanted from me.
While I'm being slightly philosophical, here's what I finally decided was wanted from me (I begin speaking about 4 minutes in, once I've been introduced): http://www.watersedgefrisco.com/video/05232010.php
Oh, Deb! What a wonderful spokesperson you are for us all! I can relate to those struggles with faith... what did I do? And, Okay, really, I've had enough now-moments.
Way to go on the Pepsi Refresh plug! The flock has heard and responded!!
Thanks! Our pastor sent out an e-mail to the whole congregation the day I spoke with a voting link (400-500 members or more) and then sent out another reminder with a long explanation of the illness and a link to vote this past Thursday. I am so grateful that they have been behind us on this! My gut instinct when asked to speak was to say "no" as I don't like public speaking. However, I knew that I was being asked for a purpose and agreed to do so. I'm so grateful to have been given that opportunity!
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OMG! The tears just won't stop. I have no words. This song is so poignantly appropriate. We are 5 weeks post IVIG and when I see my pale anxious little guy I wish I could transer the Pandas on to me. I swear I even got mad at God once and prayed to satan to sell him my soul in exchange for my son's life back. I still would willingly do it. He's had it since he was 22 mos as per Dr. K and we just found out when he had a massive classic pandas episode in March., hes 8.5 now. So many episodes over the years for different things. We treated symptoms- speech therapy, sensory integration, etc etc but never even knew about the cause being pandas.
Jodie
When I first heard this song several months ago, it hit home. However, for me, it was my conversation with God and me telling him that even though at one time I was mad when our daughter first became ill, I had come back around but still wanted to know what He wanted from me.
While I'm being slightly philosophical, here's what I finally decided was wanted from me (I begin speaking about 4 minutes in, once I've been introduced): http://www.watersedgefrisco.com/video/05232010.php
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how about that!
I am overjoyed!!!!!
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A quick reminder that the Dallas area PANDAS support group will have its second meeting this Monday, June 28th at 7:00 p.m. We will be meeting at Water's Edge in Frisco:
5475 Coit Road
Frisco, TX 75035
If you have additional questions, please feel free to send me a message!
Can't wait! Do you need me to bring anything?
Brandy
I think we're good. I'm baking some cookies and bringing some water as well as the tissue boxes from last meeting. It will be nice to see everyone again! The nutritionist is going to be there to provide input and answer questions.
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A quick reminder that the Dallas area PANDAS support group will have its second meeting this Monday, June 28th at 7:00 p.m. We will be meeting at Water's Edge in Frisco:
5475 Coit Road
Frisco, TX 75035
If you have additional questions, please feel free to send me a message!
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Oh, you didn't hear? Your brother in law consulted bgbarns' uncle...that learning annex class is amazing!!!
Either that or it was a zoologist from Shanghai...
bqbarnes -- So sorry you are going through this with your family. It makes a difficult situation even harder to bear. We'll all have extra hugs for you at Monday's support group! Call me if you need to vent!
airial95 -- Thanks for posting! Your comments made my day.
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what dr. are you using from Texas???? We live near Beaumont, TX which is 90 miles east of houston, tx. I wonder why Texas has a high incidence rate of PANDAS??? I actually have 2 boys that show signs of PANDAS.
I'm in north Texas in a town called Mansfield kind of south of Dallas & Fort Worth. I wouldn't recommend the neurologist that I'm currently seeing but this is a list of the doctors I know of that deal with P.A.N.D.A.S.
Dr. Charles Goebel (diagnoses but doesn’t treat)
Pediatric Specialists of Plano
3405 Midway Road Suite 650
Plano, TX 75093
(972) 473-7777
http://www.facebook.com/l/582dc;www.psopkids.com
Roger Skiles MD
Stonebriar Ear, Nose & Throat
5575 Warren Parkway
Suite 104
Frisco, Texas 75034
(469) 633 - 9595
Fax: (469) 633 - 9460
Debra Phelan, Ph.D.
Clinical Psychologist
12820 Hillcrest Road, Suite C218
Dallas, Texas 75230
(214) 848-2686
Dr. Bambi Hoefner
3275 West Alabama Street SUITE B
Houston, TX 77098
(713) 524-4477
Dr. David Owen, M.D.
Pediatric Neurologist
Medical City Dallas
7777 Forest Lane, Suite A307
Dallas, TX 75230-2507
972-566-8600
Dr. Seshagiri Rao, MD
Allergy, Asthma and Immune Disorders
3016 Communication Parkway, Suite 100
Plano, TX 75093-8906
972-964-7373
I don't know how close any of those are to you & I have yet to see any (although I'm making an appointment with Own &/or Phelan soon), but hope that helps!
Just a quick note on the doctors. Dr. Goebel was the pediatrician used in our news story here. He can diagnose PANDAS but so far is not on board for treating with long term antibiotics. Therefore, I wouldn't recommend him for long term treatment.
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If it doesn't end in a few days, check with your doctor to see if it could be e-coli or salmonella poisoning. I had this 6 years ago after eating out and after 6 days of diarrhea and losing 12 pounds, they decided my illness was bacterial and not viral. Within a few hours of starting an antibiotic, all symptoms started to clear and I was on the mend.
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New rule in the FAQ for Pepsi Refresh! Did anyone notice this?
Is proxy voting allowed?
Proxy voting is not allowed. We understand this may not have been clear within the original Application Guidelines, though always against the spirit and integrity of the program. As of June 1st, any idea that uses proxy voting which includes but is not limited to creating multiple and/or dummy emails may be disqualified.
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Just an idea! Everyone may want to contact their e-mail lists before Monday to get additional proxies. I sent the following out today to everyone on my list. Many have been voting but I am not sure how faithful they would be into June:
Friends and Family,
First of all, a huge thank you to all of you who have been faithfully voting for the Pepsi Refresh grant for Dr. Cunningham's PANDAS research. Your support means the world to us! This is a good news/bad news scenario. The bad news is that we are currently in 23rd place. We hope to pull up into the top 10 in the next 3 days. However, there is a great likelihood that this won't happen.
The good news is that since we are in the top 100, we will roll into the month of June and voting will begin again. Since we now have a larger voting base, there is a good chance we can start and finish strong in June. A strong start is key as many of the leaders this month are roll overs from last month. I realize that many of you are tiring of the daily voting and slow performance of the site. There are several options available to you:
1. Continue voting daily through the month of June as you have been doing for May.
http://www.refresheverything.com/pandas
2. If you are tired of voting and would like me to vote daily for you, you may send me your username and password and I will cast your daily vote when I am casting mine.
3. If you are currently voting through Facebook and want me to take over voting for you, I will need to set up an account for you on the Pepsi Refresh site. To do this, I will need your birthdate and e-mail address.
Proxy voting is allowed, so this is not violating Pepsi Refresh rules.
Again, thank you for all of your support!
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I see many cause are slipping, however, we have been holding steady the past several days.
Keep with it...keep voting....we may just be able to pull ahead!
The Lemurs went from being at #9 at one point to #17 today.
You never know......
VOTE!!!!!
Comments are working again!
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I voted 3 of my votes this morning and left comments for each on the 9 additional causes I am voting for. When I would go in for the second sign in, I noted that none of my comments remained. It looks like the comments aren't saving this morning!
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We're gearing up for the last week of May voting and I'm trying to grasp how many votes we have, specifically those with proxy votes. If you have 25+ proxy votes, can you please list the amount here? If you don't have that many, it's okay. I know everyone is pulling their weight and working as hard as they can, esp while living with PANDAS. I want to try to scale down our voting list and certain ones I may be able to delegate to one person or we can try to contact entries this weekend and make sure we are hopefully, appropriately, reciprocated. We need good communication this last week. We can pull this off. I know we can!
Thanks.
All I need to know is if you have more than 25 proxy votes, what the amount is. One of us (me, P.Mom, or JAG) may eventually message you with a request for a specific entry.
Vickie,
I don't have proxy votes, however about 30 to 40 people are clicking through my posts through Frisco-On-Line daily so I am guessing that it is people voting as it is the same post that's been there for awhile.
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Hi. I was wondering if I can get some feedback on the way we're doing the list. Is anyone reading it, is it helpful? Just don't want to waste time doing it if it doesn't make sense. Be honest! Thanks!
Also, I'm going through the boards of the entries we're supporting and see barely any PANDAS comments. I know the site is loading slow on the page of submissions.. If you cannot comment, please let me know and I will comment the number of votes for you. I haven't had real issues w/ the site yet by me. If we are not visible, they will not know we are still voting for them. Thanks!
Vickie -- I check this post daily before voting, so it's been really helpful! I was telling someone about the vote today and she had her laptop with her so I showed her how to log on and do it. She's going to forward to her family and friends. She uses Internet Explorer. It was extremely slow! I use Firefox as my browser and came home to try it. It is twice as fast on the Pepsi Refresh site.
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Wonderful article, Buster! Thanks for all you do for us in the PANDAS community. I have sent a link for this out to many today.
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Good thing I just added them at the very end this morning....I doubt anyone voted for them....it was last on the list! I know I didn't! Again, thanks, and sorry!
I have been in personal contact via e-mail with Jett Foundation and Synergy....they replied, and then I just now sent them a return e-mail requesting to form a strong alliance. I also am waiting to hear back from a couple others. I hope this works. If so, we will dedicate a day to strictly vote for these causes, and, them for us! I'll let you knw what I hear.
Gotta run to baseball!
Kelly
Thanks for organizing this, Kelly!!! I know if must take a ton of time, but is truly appreciated!
Just scheduled IVIG next week!
in PANS / PANDAS (Lyme included)
Posted
Great news! Which local doctor are you seeing?