DebC

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 making a difference It is still being viewed as a dad in our area found it and posted it to YouTube in December. I discovered it was there in January and since he posted it, the video has been viewed 489 times so I'm hoping it's still making a difference. ( ) The negatives are: Reading the comments posted on the web sites after the story aired. I had to be thick skinned as there were several that were just mean spirited. The news station insisted that they had to use our pediatrician for the story and he only diagnoses PANDAS and does not treat. We wanted them to use our ENT who treats, but they wanted a pediatrician. To get the word out and raise awareness, I agreed. However, the positives far outweighed the negatives. Our daughter, now 11, is still happy that we did the story. Her class watched it and everyone was proud of her for speaking out.

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.

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.

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 will have a team of additional specialists to continue treatment once the removal is complete. After that, we will be looking at synthroid as half or all of the thyroid will be removed depending upon what is found once they begin operating. The interesting thing is that I had resistant strep starting in May and had to continue antibiotics through July. I started having neck pain in July and kept thinking it was the strep. My rapid is currently positive but the culture is negative. We are seeing some reaction in our PANDAS daughter. I can still taste the strep and in my research have found that strep can reside in the thyroid causing suppurative thyroiditis. The surgical oncologist immediately wrote this off as not being a possibility. However, I'm hoping that the thyroid specialist will embrace this possibility. I at least want her to test the removed tissue for strep so that I can be properly treated if there is some present along with the hurthle cells. We had a speaker at our September PANDAS support group meeting who said that I should be on a gluten free diet due to my thyroid issues. However, I have not begun to explore that avenue yet. We are already on a low sugar, low white flour, no hydrogenated oil, no milk, no white rice diet. The thought of limiting even more is daunting at this point.

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 if the other tests come back normal, so you have to advocate for yourself and say that you want those two tests run. My TPO test in August was supposed to come in under 35 and was at 80. Therefore, there is definitely something going on. I had a biopsy done and hurthle cells are present so I am currently pursuing the advice of several surgeons to see if removal is necessary or whether they can determine if the cells are benign or malignant without going in (first appointment today and 2nd opinion on 10/11). I think it's interesting that thyroid issues seem to crop up in PANDAS families. Our PANDAS daughter had thyroid levels run in August as well and so far hers are normal.

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 antibiotics. Around July 20th, we started noticing an increase in OCD in our PANDAS daughter and she was strep free. I went back in to my GP who did a rapid strep test on me which was positive so I was put back on Zithromax. As I neared the end of the 7 day course of Zithromax, I still was feeling bad so went to see my ENT. He put me on Cipro twice a day for 14 days. I finished the medication on a Thursday and by Monday started to feel sick again. I had a follow up appointment with my ENT that Tuesday morning -- I had taken the last Cipro pill on Thursday morning. He did a sensitivity culture which took 5 days to get results. He called this past Monday and said that the culture was negative for strep. Meanwhile, our PANDAS daughter was still showing increases in OCD. Therefore, our pediatrician called in Augmentin for her. Since I was still feeling ill, I called my GP and asked for an appointment for an autoimmune workup for myself. When I got to his office, he wanted to do a rapid strep test as well as a traditional culture just to make sure I wasn't still feeling the effects of strep. The rapid test came back positive and he sent the culture out. Therefore, he didn't do the autoimmune workup. I started taking Avelox. Yesterday (Wednesday), the culture came back negative. The GP and the ENT both said to discontinue the Avelox. I have taken 3 out of the 10 days. The side effects are fatigue and dizziness. I have scheduled an autoimmune workup with my GP for next Tuesday and am going to ask him to run my titers and test for mono as well since I have had fatigue, achiness, sore neck and throat all summer. Sjogren's, RA, Behcet's, and polychondritis are all on my side of the family. Here are my questions: 1. Do I discontinue the antibiotic per doctor's orders since it makes me feel worse? 2. If I don't discontinue the antibiotic, will it have an effect on the titer test? 3. Is a rapid strep test ever a false positive (since my actual culture was negative)? 4. Does the rapid positive and culture negative mean I'm a carrier? If so, how do I get out of that state? (I'll be asking this one when I see my GP on Tuesday as well.) We had our non PANDAS son's blood draw yesterday to check strep titers and mycoplasma levels as he has been showing more separation anxiety than normal all summer. Our pediatrician thinks it's a normal stage of development as our son is 7 and his daughters showed similar behavior at that age. Our son had strep in May and then mycoplasma in August. Therefore, our daughter's increase in behavior may be related to our son's mycoplasma since he had it for awhile before diagnosis and not to me. Therefore, I might not actually be strep positive. It is so hard to figure out but I have to get the the bottom of what is going on!

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 (972) 294-0808 Dr. William Zinser (pediatric neurologist) -- Phone: (214) 456-2768 (must be referred by a pediatrician) Dr. Debra Phelan (child psychologist), uses CBT – Phone: (214) 848-2686 Dr. Tracey Wiest, Wolverton Chiropractic – (972) 231-4231 Dr. Roger Skiles -- http://www.stonebriarent.com/contact.php (469) 633-9595

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!

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 caught strep a second time from our son. I am on day 5 of a 10 day course of clindamycin 150 mg 4 times a day (the previous time was only 3 times a day). So far, the fatigue and sore throat are persisting. I'm not sure if this is because I am sick a second time and my body is tired or if I never cleared. I was also on prednisone the last 6 days of my antibiotic for poison ivy so that probably lowered my immune function. My doctor said to call on Tuesday after the holiday if this continues and I will see an ENT. Are there any other drugs out there that could kick this that I wouldn't be allergic to? I am getting really concerned as I don't want to infect our PANDAS daughter or anyone else, for that matter. Our pediatrician upped her medication to Augmentin for 14 days while I am on my medication so she is not currently showing any sign of exacerbation.

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.

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 and I can get the information to you. I also have a list of doctors who have been helpful in the Dallas area. The Trophy Club doctors listed above have become hesitant to do much for PANDAS as of late. Here is a list which we try to update regularly via feedback from our group parents: 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 (pediatrician) – http://www.healthykidspediatrics.com (972) 294-0808 Dr. William Zinser (pediatric neurologist) -- Phone: (214) 456-2768 Dr. Debra Phelan (child psychologist), uses CBT – Phone: (214) 848-2686 Dr. Tracey Wiest, Wolverton Chiropractic – (972) 231-4231 Dr. Roger Skiles -- http://www.stonebriarent.com/contact.php (469) 633-9595

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.

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 symptoms. They also switched her to 10 days of augmentin as a protection during that time. After which, we returned to the azith. This was a terrible year for strep at our schools!

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 husband and said, "Our son has mycoplasm and it's causing our daughter's symptoms to flare". I made an appointment the next morning with our pediatrician and he listened to our son's chest and thought it sounded suspicious. He sent us for x-rays and sure enough, it was mycoplasm. Within 72 hours of our son starting antibiotics, our PANDAS daughter was back to her normal self. She never contracted the illness as she was on a prophylactic dose of azith. However, she was obviously making antibodies to it which caused a mild exacerbation of behavior.

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.

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?

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 at the time of onset and now with a M/W/F course of azith prophylactically, she is symptom free. She still cleans a bit more than an average 10 year old, but that behavior was learned during her exacerbation and she is actually helpful around the house with keeping things in order. When we tell her to stop, she is able to. We see small flares if she is exposed to strep, even on antibiotics. We saw a flare in October when her brother had mycoplasma and we saw an uptic in cleaning this winter when her friend had strep and she contracted it. Her strep this winter was just a blip on the radar as she was on a prophylactic antibiotic and once we knew she had strep, she was put on augmentin. She is doing quite well now -- happy, well adjusted, enjoying ballet and jazz, school, and friends. She doesn't remember a lot of what happened during her time of extreme illness, thank heavens. There is definitely hope!" As PANDAS parents, we do feel like we are standing on the edge of a cliff, waiting to see what happens next. It's hard to shake the worry, but I am gradually moving on. The worry is still there, but I'm incorporating it into my life and learning to push it to the back of my mind. Of course, it comes right back to the forefront whenever there is a strep outbreak at school which has pretty much been the constant since January at our school. Here is a testimony that I gave at our church regarding our journey: http://www.watersedgefrisco.com/video/05232010.php

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 now with a M/W/F course of azith prophylactically, she is symptom free. She still cleans a bit more than an average 10 year old, but that behavior was learned during her exacerbation and she is actually helpful around the house with keeping things in order. When we tell her to stop, she is able to. We see small flares if she is exposed to strep, even on antibiotics. We saw a flare in October when her brother had mycoplasma and we saw an uptic in cleaning this winter when her friend had strep and she contracted it. Her strep this winter was just a blip on the radar as she was on a prophylactic antibiotic and once we knew she had strep, she was put on augmentin. She is doing quite well now -- happy, well adjusted, enjoying ballet and jazz, school, and friends. She doesn't remember a lot of what happened during her time of extreme illness, thank heavens. There is definitely hope!

Mainly German with a little bit or Irish and French sprinkled in.

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.

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 been a difficult decision to make.

I LOVE posts like this!

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

Sent you a message!

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!