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DebC

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Everything posted by DebC

  1. We participated in a news story back in May of 2010 here in the Dallas area. Our daughter was 9 at the time and she and I discussed it before agreeing to filming. It aired in Dallas and in affiliate stations in Houston, San Antonio, and Austin. The positive are: Support groups were formed due to the story thanks to the recommendation of a local mom Awareness was raised in our area and around the world (I received forwarded e-mails from the news station from as far away as Australia) Our daughter and I felt like we were turning our negative situation into something positive by m
  2. Dean -- This is Debbie -- We spoke this morning. We used apple sauce to aid our daughter with swallowing her pills. We put the pill in a spoonful of the apple sauce and down it would go. As recommended above by others, a probiotic is also a good thing to use when on a long term antibiotic to promote gut health. Another PANDAS mom recommended that we try Theralac and we have been very happy with it. http://www.theralac.com/Default.aspx We order it from the site and they ship it to us.
  3. Our daughter weighs 79 lbs and is taking 250 mg azithromycin every M/W/F. Of course, her brother came down with strep today so we are doing 5 days in a row of azith just to be on the safe side.
  4. I'm heading down the same road myself. My levels are normal except for my TPO antibody level which is at 80 and should be below 35. I am suspecting Hashimoto's Disease as I also have a nodule of 2 cm and a huge autoimmune history on my side of the family. However, I am looking at surgery within the month as the nodule biopsy showed the presence of hurthle cells which are malignant 17% to 20% of the time. I've seen a surgical oncologist for a first opinion and will see a thyroid surgeon/thyroid disease specialist on Tuesday. I'm hoping that she will be the best option for removal as she wi
  5. Following are the tests I was told that I should be tested for: THS Total T4 Free T4 Total T3 Free T3 TPO Antibodies (important for autoimmune issues) TGB Antibodies (important for autoimmune issues) Reverse T3 Vitamin D Levels The TPO and TGB Antibody tests will look for an autoimmune attack on the thyoid, per what has been explained to me. I currently have a 1" nodule on my thyroid so just had all of these tests run. I've been telling my doctor for over 2 years that my thyroid is off but the basic tests came back normal. Doctors will push back on doing the antibody tests i
  6. I am looking for opinions on the rapid strep test vs. the culture that is sent out. Following is a bit of history: Our PANDAS daughter came down with strep the end of April and I managed to catch it from her. We both seemed to recover when, approximately the middle of May, our non PANDAS son came down with it. I once again caught it from him. Both children cleared. However, I went through several rounds of medication (Biaxin & Clindamycin) before I was considered clear around June 20 after a thorough swab and culture by my ENT. I am allergic to penicillin and cephalosporin based
  7. Here is a list that the Dallas/Fort Worth PANDAS Support Group has compiled. These are doctors who our members have found to be helpful. Our daughter has not seen the pediatrician on the list but use our ENT, Dr. Skiles, for continued PANDAS care. Several other group members do see Dr. Ashworth and she has been quite helpful! Area Doctors Who Have Been Helpful in Treating PANDAS Dr. Seshagiri Rao (immunologist): http://www.allergyandasthmatreatmentcenter.com/ Dr. Ashworth (pediatrician): http://www.drcarolynashworth.com/ Deborah Bain – http://www.healthykidspediatrics.com
  8. Just a quick reminder that the Dallas area PANDAS Support Group will meet Monday evening, June 27th at 7:00 p.m. We will meet at Water's Edge in Frisco. Water's Edge is located at 5475 Coit Road. This is about a mile north of the Highway 121/Coit intersection. Our sister group from Fort Worth/Grapevine will be joining us for this meeting! Please contact me for additional information!
  9. I caught strep from our PANDAS daughter about 4 weeks ago. Luckily, our daughter was on a low dose prophylactic when she got sick and her exacerbation of symptoms only lasted about 5 days before a return to baseline. I am allergic to cephalosporin and penicillan so was put on clarithromycin but the symptoms didn't go away so I was switched to clindamycin. I felt better upon completion of the medication and a day later, our non PANDAS son developed strep. I was sick with strep 2 days later and once again put on clindamycin. We are not sure whether my infection ever cleared or whether I cau
  10. Just a quick reminder that the Dallas PANDAS Support Group will meet tonight (5/23) at 7:00 p.m. at Water's Edge in Frisco. Please contact me for additional information.
  11. Another doctor to check in the DFW area is Dr. Zinser. Her is a pediatric neurologist at Dallas Children's Hospital downtown. He just successfully treated a recent diagnosis of PANDAS with IVIG. You have to be referred to him by your pediatrician and can't call directly for an appointment, though. Also, I head up the Dallas Area PANDAS Support Group. We meet the 4th Monday of the month so our next meeting is this coming Monday. We meet in Frisco. Roxann heads up the Grapevine/Fort Worth Group which also meets this coming week. Please let me know if you are interested in attending
  12. Our daughter had her 10 year old physical back in September and we declined the DTAP and filled out forms through the state which allow her to attend school without continuing her vaccinations. She had a minor exacerbation 2 years ago with a flu shot so I do not want to continue vaccinating at this time as it seems to cause issues with her immune system.
  13. I posted that our daughter was on zith prophylactically and contracted strep. Her test was negative due to the antibiotic she was on, but she had the sore throat and her best friend had strep so our doctor said it was a false negative and put her on augmentin. We saw a slight uptic in obsessive cleaning. However, no other symptoms surfaced so overall, the prophylactic kept the symptoms from ramping up as they would have done in the past. When our non-PANDAS son and I had strep in February, our PANDAS daughter did not catch it and was on her azith as a prophylactic and never had additional
  14. Our non PANDAS son had surgery in October and about 5 days post op (on a weekend, of course), he developed a dry cough that was persistent and sounded a bit odd. Since he had been intubated during surgery for several hours, I suspected mycoplasm. I took him to an urgent pediatric care center close to our home and they said he just had a cold virus. Two weeks later, the cough was a bit worse, , and our PANDAS daughter, who had been symptom free for months, walked into the kitchen after being mildly scolded and flipped a chair over on its side (very uncharacteristic for her). I turned to my
  15. SSRI drugs made our daughter angry, mean, giddy, and also caused a loss of inhibition. This seems to be a common theme for PANDAS kids as inflammation is the cause of symptoms and most psychiatric drugs do not help with this. We quickly pulled her off of them and her behavior returned to a more normal state.
  16. NMMom -- Such a small world! We lived in The Woodlands through 2002 before moving to the Dallas area. My husband worked for Enron. Glad you found treatment! Do you attend the support group in The Woodlands?
  17. There is hope! I posted this in another thread a few minutes ago: "Her symptoms started literally overnight in January of 2008. She went to bed on a Wednesday night with no symptoms but on an antibiotic for a strep infection. She woke up consumed with fears and anxiety the next morning. This continued to ramp up over the next week or two. Looking back, she had minor exacerbations after strep infections from the time she was 4 on. We just thought she was going through "a phase" until the major onset at age 8. We are a bit over two years post serious exacerbation. With antibiotic treatment
  18. I am 100% sure our daughter has PANDAS. Her symptoms started literally overnight in January of 2008. She went to bed on a Wednesday night with no symptoms but on an antibiotic for a strep infection. She woke up consumed with fears and anxiety the next morning. This continued to ramp up over the next week or two. Looking back, she had minor exacerbations after strep infections from the time she was 4 on. We just thought she was going through "a phase" until the major onset at age 8. We are a bit over two years post serious exacerbation. With antibiotic treatment at the time of onset and
  19. Mainly German with a little bit or Irish and French sprinkled in.
  20. If you live in the Dallas area, the Dallas Support Group will meet Monday evening, February 28th at 7:00 p.m. at Water's Edge Frisco. You may message me for further information. If you live in the Fort Worth/Grapevine area, a new support group is forming. Message me and I can put you in contact with that group leader as well.
  21. Our daughter had an adverse reaction to the varicella vaccine as well. She developed shingles and then within months, a PANDAS exacerbation. I often wonder if the varicella vaccine is somehow linked to PANDAS as PANDAS cases seemed to spike once that vaccine was introduced. It may just be me wondering, but I'd be curious to know if there was is an immune trigger in that vaccine that leads to PANDAS onset in our children. Because of this reaction and PANDAS, she will no longer receive vaccines either. I think we will stop vaccinating our son as well since PANDAS can run in families. It's
  22. Dr. Cunningham is currently researching PANDAS as the University of Oklahoma and has developed a test that can help determine PANDAS. Here is a link to her profile: http://www.oumedicine.com/body.cfm?id=4290
  23. Please feel free to join us at our next Dallas PANDAS Support Group Meeting. We just met tonight and meet the 4th Monday of each month, except for December. Message me for additional information!
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