Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 Deneen, I wonder if you could do me a favor. Someone has mistakenly put my daughter’s doctor, Quentin Collard down as a doctor that treats PANDAS. She DOES NOT treat PANDAS. She has been my daughter’s pd since birth and has helped me some with the antibiotics. When I went with my daughter for an ear infection about 2 weeks ago, she asked me if I had put her name on the internet as someone that treats PANDAS. I told her no. She said she is getting calls from all over asking for help, which she cannot give. If you know how to help get this mistake corrected, I would so appreciate it. We don’t want to lose her as a pd. I found out yesterday from someone on the Latitudes site named Suzan had posted her as treating PANDAS. I don’t know who she got this from, but I need to get it corrected. I tried to get on the Latitudes site, but am having trouble. If there is any way you can help me, I would really appreciate it. Beth in Houston From: Deneen Fowler Sent: Sunday, May 30, 2010 4:57 PM To: Beth Henry Subject: Re: PANDAS? My girls are 15 & 13. My oldest just returned from Chicago where she got IVIG from Dr. K. Praying for her full recovery. It's nice that you have a pediatrician who is willing to work with you and learn about it. Our pediatrician wouldn't have anything to do with it. Don't know if you are aware of these doctors who are listed as treating PANDAS (got their names from two different lists for PANDAS). The only doctor I have talked to on this list is the first one, Dr. Rao (talked with Lori in his office). I'm trying to get a phone call set up with him to see about treating our youngest daughter (who has worse OCD than older daughter) in Plano instead of going to Chicago. Best of luck to you and your family. Dr. Sesagiri Rao, MD Allergy, Asthma and Immune Disorders 3016 Communication Parkway, Suite 100 Plano, TX, 75093-8906 Dr. Owen, MD Pediatric Neurologist 7777 Forest Lane, Suite A307 Dallas, TX, 75230-2507 Skiles, MD www.stonebriarent.com 5575 Warren Parkway, Suite 104 Frisco, TX, 75034 Dr. Mark Mazade Pediatric Infectious Disease Specialist with Cook Children's Medical Center 800 7th Ave Fort Worth, TX, 76104-2704 Dr. Wilfred Raine Pediatrician in the Cook Children's group. 848 W. St. Arlington, TX, 76013 Quentin Collard Medical Center on Fannin Street Houston, TX . Deneen _____ To: Deneen Fowler Sent: Wed, May 19, 2010 10:37:44 PM Subject: RE: PANDAS? Deneen, No unfortunately we don’t have a doctor for the IVIG. I have been so very lucky that my pediatrician is working with me on it. When my daughter was younger she had strep A twice and the other strep constant. She had 2 little episodes (noting big), one where her panties were too tight (they were actually hanging, as we had to keep getting bigger) and another similar. She had strep at these times. The doctor said at that time she thought it might possibly be at little bit of obsessive behavior. She said that there had been some studies done recently (this was about 5 years ago) that showed a link between strep and some of this type of behavior. At the time I didn’t think much of it as I was totally in the dark about OCD. So when our dd started with her horrible worry loop last August, I went to the computer frantic, trying to figure out what was happening to her. Up popped the PANDAS and the OCD and a light clicked. Our dd had just come home from camp with a horrible eye infection, either strep or staph. It took 3 weeks with medication to clear. And that started our uphill battle with worry loops, bad thoughts, etc. Because she saw the other and has a chart full of strep and pneumonia on our dd, she is working with me on the antibiotic s. Our dd got so bad with bad thoughts the end of February, I was so scared, but she once again had gotten a sinus infection, from of all people the therapist we were seeing. We had an appt. a few days before and she was sick as a dog. We added another antibiotic to the mix and down it went as she got better. I later added the Inositol. Our doctor is learning with me, but she is really the only one in the practice that will. How old are your girls? Ours is 9. Beth From: Deneen Fowler Sent: Wednesday, May 19, 2010 9:07 PM To: mbgwhenry@... Subject: PANDAS? Beth, Is your daughter being treated for PANDAS? Are you seeing a doctor in Houston for this treatment? We are in Austin and have been unable to find anyone with any real PANDAS experience or anyone willing to work with Dr. K in Chicago to treat us here. My oldest daughter is going to Chicago next week for IVIG. My younger daughter also has PANDAS but is much worse and cannot travel to Chicago for treatment. We are trying to find a doctor closer, like Houston, Dallas, etc. that we could take my younger daughter to. Does the doctor you see treat with IVIG? Thanks for your help! Deneen Fowler No virus found in this incoming message. Checked by AVG - www.avg.com <http://www.avg.com/> Version: 9.0.819 / Virus Database: 271.1.1/2883 - Release Date: 05/19/10 01:26:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 9.0.829 / Virus Database: 271.1.1/2922 - Release Date: 06/06/10 13:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 This is an intro of sorts, but ties into Dr. Collard. My 9yo son was diagnosed Aspergers at age 5 by Texas Childrens, got scarlet fever which the ped would not treat for 10 days until the lab results came back, and resulted in PANDAS. We have been going to see Lucas at Thoughtful House in Austin, and they diagnosed the PANDAS at age 7/8, and we've had good luck. Recently saw Dr. Collard's name as a local Houston ped who treats PANDAS, went to see her, and she was adamant about not only not treating, but not sure it exists, and in direct conflict with Thoughtful House overall. So Beth in Houston, you're right...we need to get her name off the list! Have you looked into TH? We're going next week for our yearly checkup, but do most of our business with mail-off labs and phone call consults. My son's antiDNase was 1600 when first diagnosed and is now 480. Still way out of range, but significantly better, using prophylactic azithromax. Anxiety is markedly improved, but OCD remains. Stool tests do still show strep, clostridia, and very low good yeast strains. He originally had unreal constipation which was what started us with TH, and that has since resolved, as long as we are diligent with biomeds and a strict limit on dairy. I am certain that his OCD is directly related to the strep and clostridia, so I have not used any prescription meds for it. But as we have struggled for years now, I do at times consider it. I am following these conversations with great interest. Thank you for letting me join in! Deana K. Pearland, TX > > Deneen, > > > > I wonder if you could do me a favor. Someone has mistakenly put my daughter’s doctor, Quentin Collard down as a doctor that treats PANDAS. She DOES NOT treat PANDAS. She has been my daughter’s pd since birth and has helped me some with the antibiotics. When I went with my daughter for an ear infection about 2 weeks ago, she asked me if I had put her name on the internet as someone that treats PANDAS. I told her no. She said she is getting calls from all over asking for help, which she cannot give. If you know how to help get this mistake corrected, I would so appreciate it. We don’t want to lose her as a pd. I found out yesterday from someone on the Latitudes site named Suzan had posted her as treating PANDAS. I don’t know who she got this from, but I need to get it corrected. I tried to get on the Latitudes site, but am having trouble. If there is any way you can help me, I would really appreciate it. > > > > Beth in Houston > > > > From: Deneen Fowler > Sent: Sunday, May 30, 2010 4:57 PM > To: Beth Henry > Subject: Re: PANDAS? > > > > My girls are 15 & 13. My oldest just returned from Chicago where she got IVIG from Dr. K. Praying for her full recovery. > > > > It's nice that you have a pediatrician who is willing to work with you and learn about it. Our pediatrician wouldn't have anything to do with it. > > > > Don't know if you are aware of these doctors who are listed as treating PANDAS (got their names from two different lists for PANDAS). The only doctor I have talked to on this list is the first one, Dr. Rao (talked with Lori in his office). I'm trying to get a phone call set up with him to see about treating our youngest daughter (who has worse OCD than older daughter) in Plano instead of going to Chicago. > > > > Best of luck to you and your family. > > > > Dr. Sesagiri Rao, MD > > Allergy, Asthma and Immune Disorders > > 3016 Communication Parkway, Suite 100 > > Plano, TX, 75093-8906 > > > > > > Dr. Owen, MD > > Pediatric Neurologist > > 7777 Forest Lane, Suite A307 > > Dallas, TX, 75230-2507 > > > > > > Skiles, MD > > www.stonebriarent.com > > 5575 Warren Parkway, Suite 104 > > Frisco, TX, 75034 > > > > > > Dr. Mark Mazade > > Pediatric Infectious Disease Specialist with Cook Children's Medical Center > 800 7th Ave > > Fort Worth, TX, 76104-2704 > > > > Dr. Wilfred Raine > > Pediatrician in the Cook Children's group. > 848 W. St. > > Arlington, TX, 76013 > > > > > > Quentin Collard > Medical Center on Fannin Street > > Houston, TX > . > > Deneen > > > > > > > > _____ > > > To: Deneen Fowler > Sent: Wed, May 19, 2010 10:37:44 PM > Subject: RE: PANDAS? > > Deneen, > > > > No unfortunately we don’t have a doctor for the IVIG. I have been so very lucky that my pediatrician is working with me on it. When my daughter was younger she had strep A twice and the other strep constant. She had 2 little episodes (noting big), one where her panties were too tight (they were actually hanging, as we had to keep getting bigger) and another similar. She had strep at these times. The doctor said at that time she thought it might possibly be at little bit of obsessive behavior. She said that there had been some studies done recently (this was about 5 years ago) that showed a link between strep and some of this type of behavior. At the time I didn’t think much of it as I was totally in the dark about OCD. So when our dd started with her horrible worry loop last August, I went to the computer frantic, trying to figure out what was happening to her. Up popped the PANDAS and the OCD and a light clicked. Our dd had just come home from camp with a horrible eye infection, either strep or staph. It took 3 weeks with medication to clear. And that started our uphill battle with worry loops, bad thoughts, etc. Because she saw the other and has a chart full of strep and pneumonia on our dd, she is working with me on the antibiotic s. Our dd got so bad with bad thoughts the end of February, I was so scared, but she once again had gotten a sinus infection, from of all people the therapist we were seeing. We had an appt. a few days before and she was sick as a dog. We added another antibiotic to the mix and down it went as she got better. I later added the Inositol. Our doctor is learning with me, but she is really the only one in the practice that will. > > > > How old are your girls? Ours is 9. > > > > Beth > > > > From: Deneen Fowler > Sent: Wednesday, May 19, 2010 9:07 PM > To: mbgwhenry@... > Subject: PANDAS? > > > > Beth, > > > > Is your daughter being treated for PANDAS? Are you seeing a doctor in Houston for this treatment? > > > > We are in Austin and have been unable to find anyone with any real PANDAS experience or anyone willing to work with Dr. K in Chicago to treat us here. My oldest daughter is going to Chicago next week for IVIG. My younger daughter also has PANDAS but is much worse and cannot travel to Chicago for treatment. We are trying to find a doctor closer, like Houston, Dallas, etc. that we could take my younger daughter to. Does the doctor you see treat with IVIG? > > > > Thanks for your help! > > > Deneen Fowler > > > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com <http://www.avg.com/> > Version: 9.0.819 / Virus Database: 271.1.1/2883 - Release Date: 05/19/10 01:26:00 > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.829 / Virus Database: 271.1.1/2922 - Release Date: 06/06/10 13:35:00 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 Deana, welcome! Was wondering, does Aspergers still fit? Asking as wondered if anything changed later regarding those " symptoms " that led to that dx or maybe rather if things improved with any of his treatments in the AS direction. My son, now 21, has OCD and Aspergers, so was curious. Glad you jumped into the discussion! This group has always been my best support for OCD (and even a little venting on my other 2 over the years, no OCD, LOL) but they've kept me sane here! Never tied my son to PANDAS, though I wondered, some things fit, but when it comes to the OC behaviors kids do, we are all in the " same boat " so far as how to address those. My son was on Celexa for a couple years, before that we used inositol powder (B vitamin family) from 6-8th grades, it worked well for us. Sort of like some medications, inositol may or may not help. We have tried it again a couple times but no help. He refuses prescription medication, sigh. His OCD began in 6th grade, a lot of compulsions, rituals.... Finally got beyond all that, returned later with " bad thoughts " , the scrupulosity type of OCD. When younger, he was such a picky, limited eater that we never tried any type diet for him, restricting anything. Glad you found a nearby doctor to help with PANDAS, they seem to be rare and very spread out around the country! single mom, 3 sons > > This is an intro of sorts, but ties into Dr. Collard. My 9yo son was diagnosed Aspergers at age 5 by Texas Childrens, got scarlet fever which the ped would not treat for 10 days until the lab results came back, and resulted in PANDAS. We have been going to see Lucas at Thoughtful House in Austin, and they diagnosed the PANDAS at age 7/8, and we've had good luck. Recently saw Dr. Collard's name as a local Houston ped who treats PANDAS, went to see her, and she was adamant about not only not treating, but not sure it exists, and in direct conflict with Thoughtful House overall. So Beth in Houston, you're right...we need to get her name off the list! Have Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 From: Beth Henry Sent: Friday, July 16, 2010 12:46 PM To: 'lindavegasims@...' Subject: RE: Re: PANDAS? I know, , but if she decides to no longer help us, what are we going to do. Jerry is facing 3 major surgeries in the next few months and I have my hands so full, I can’t tell you. She trusted me and I could see a big difference on the last visit. They are not happy about getting the PANDA calls. Beth From: lindavegasims@... Sent: Friday, July 16, 2010 12:40 PM To: Beth Henry Subject: Re: Re: PANDAS? Don't worry she won't drop u its just an inconvenience for her office and all they have to do is say she doesn't treat pandas Sent from my Verizon Wireless BlackBerry _____ Date: Fri, 16 Jul 2010 12:38:19 -0500 To: Subject: RE: Re: PANDAS? Thank you . I am so upset. If I lose my doctor over this, we are doomed. We have nowhere else to turn to for anything. I can’t believe this happened. From: lindavegasims@... Sent: Friday, July 16, 2010 12:35 PM To: Beth Henry Subject: Re: Re: PANDAS? Beth I sent a private message to that susan person so u would not see it. Also the site is down for some work today. I also found 5 emails from another women that had given collards name out and I asked to tell her to remove her name I have the names of the people she gave. Her name to and will call them or email today Sent from my Verizon Wireless BlackBerry _____ Date: Fri, 16 Jul 2010 12:31:26 -0500 To: ; Pohlman Subject: FW: Re: PANDAS? , I somehow can’t get on the latitudes to do anything but view, but I didn’t see the message about Dr. Collard last night. Do you know if it is on there and if they have put something out about not contacting her. Beth From: [mailto: ] On Behalf Of Beth Henry Sent: Friday, July 16, 2010 12:16 PM To: Subject: RE: Re: PANDAS? Deana, Do you remember when you went for a visit. I’m wondering if it was before or after our last visit. She was upset over her name being given out. I think I am going to lose the only help we have ever had, and our Doctor, who has been so helpful to us raising our granddaughter/daughter over this. We all desperately need more doctors that believe in this. Beth From: <mailto:%40yahoogroups.com> [mailto: <mailto:%40yahoogroups.com> ] On Behalf Of tk5552@... <mailto:tk5552%40swbell.net> Sent: Friday, July 16, 2010 10:45 AM To: <mailto:%40yahoogroups.com> Subject: Re: PANDAS? This is an intro of sorts, but ties into Dr. Collard. My 9yo son was diagnosed Aspergers at age 5 by Texas Childrens, got scarlet fever which the ped would not treat for 10 days until the lab results came back, and resulted in PANDAS. We have been going to see Lucas at Thoughtful House in Austin, and they diagnosed the PANDAS at age 7/8, and we've had good luck. Recently saw Dr. Collard's name as a local Houston ped who treats PANDAS, went to see her, and she was adamant about not only not treating, but not sure it exists, and in direct conflict with Thoughtful House overall. So Beth in Houston, you're right...we need to get her name off the list! Have you looked into TH? We're going next week for our yearly checkup, but do most of our business with mail-off labs and phone call consults. My son's antiDNase was 1600 when first diagnosed and is now 480. Still way out of range, but significantly better, using prophylactic azithromax. Anxiety is markedly improved, but OCD remains. Stool tests do still show strep, clostridia, and very low good yeast strains. He originally had unreal constipation which was what started us with TH, and that has since resolved, as long as we are diligent with biomeds and a strict limit on dairy. I am certain that his OCD is directly related to the strep and clostridia, so I have not used any prescription meds for it. But as we have struggled for years now, I do at times consider it. I am following these conversations with great interest. Thank you for letting me join in! Deana K. Pearland, TX > > Deneen, > > > > I wonder if you could do me a favor. Someone has mistakenly put my daughter’s doctor, Quentin Collard down as a doctor that treats PANDAS. She DOES NOT treat PANDAS. She has been my daughter’s pd since birth and has helped me some with the antibiotics. When I went with my daughter for an ear infection about 2 weeks ago, she asked me if I had put her name on the internet as someone that treats PANDAS. I told her no. She said she is getting calls from all over asking for help, which she cannot give. If you know how to help get this mistake corrected, I would so appreciate it. We don’t want to lose her as a pd. I found out yesterday from someone on the Latitudes site named Suzan had posted her as treating PANDAS. I don’t know who she got this from, but I need to get it corrected. I tried to get on the Latitudes site, but am having trouble. If there is any way you can help me, I would really appreciate it. > > > > Beth in Houston > > > > From: Deneen Fowler > Sent: Sunday, May 30, 2010 4:57 PM > To: Beth Henry > Subject: Re: PANDAS? > > > > My girls are 15 & 13. My oldest just returned from Chicago where she got IVIG from Dr. K. Praying for her full recovery. > > > > It's nice that you have a pediatrician who is willing to work with you and learn about it. Our pediatrician wouldn't have anything to do with it. > > > > Don't know if you are aware of these doctors who are listed as treating PANDAS (got their names from two different lists for PANDAS). The only doctor I have talked to on this list is the first one, Dr. Rao (talked with Lori in his office). I'm trying to get a phone call set up with him to see about treating our youngest daughter (who has worse OCD than older daughter) in Plano instead of going to Chicago. > > > > Best of luck to you and your family. > > > > Dr. Sesagiri Rao, MD > > Allergy, Asthma and Immune Disorders > > 3016 Communication Parkway, Suite 100 > > Plano, TX, 75093-8906 > > > > > > Dr. Owen, MD > > Pediatric Neurologist > > 7777 Forest Lane, Suite A307 > > Dallas, TX, 75230-2507 > > > > > > Skiles, MD > > www.stonebriarent.com > > 5575 Warren Parkway, Suite 104 > > Frisco, TX, 75034 > > > > > > Dr. Mark Mazade > > Pediatric Infectious Disease Specialist with Cook Children's Medical Center > 800 7th Ave > > Fort Worth, TX, 76104-2704 > > > > Dr. Wilfred Raine > > Pediatrician in the Cook Children's group. > 848 W. St. > > Arlington, TX, 76013 > > > > > > Quentin Collard > Medical Center on Fannin Street > > Houston, TX > . > > Deneen > > > > > > > >_____ > > > To: Deneen Fowler > Sent: Wed, May 19, 2010 10:37:44 PM > Subject: RE: PANDAS? > > Deneen, > > > > No unfortunately we don’t have a doctor for the IVIG. I have been so very lucky that my pediatrician is working with me on it. When my daughter was younger she had strep A twice and the other strep constant. She had 2 little episodes (noting big), one where her panties were too tight (they were actually hanging, as we had to keep getting bigger) and another similar. She had strep at these times. The doctor said at that time she thought it might possibly be at little bit of obsessive behavior. She said that there had been some studies done recently (this was about 5 years ago) that showed a link between strep and some of this type of behavior. At the time I didn’t think much of it as I was totally in the dark about OCD. So when our dd started with her horrible worry loop last August, I went to the computer frantic, trying to figure out what was happening to her. Up popped the PANDAS and the OCD and a light clicked. Our dd had just come home from camp with a horrible eye infection, either strep or staph. It took 3 weeks with medication to clear. And that started our uphill battle with worry loops, bad thoughts, etc. Because she saw the other and has a chart full of strep and pneumonia on our dd, she is working with me on the antibiotic s. Our dd got so bad with bad thoughts the end of February, I was so scared, but she once again had gotten a sinus infection, from of all people the therapist we were seeing. We had an appt. a few days before and she was sick as a dog. We added another antibiotic to the mix and down it went as she got better. I later added the Inositol. Our doctor is learning with me, but she is really the only one in the practice that will. > > > > How old are your girls? Ours is 9. > > > > Beth > > > > From: Deneen Fowler > Sent: Wednesday, May 19, 2010 9:07 PM > To: mbgwhenry@... > Subject: PANDAS? > > > > Beth, > > > > Is your daughter being treated for PANDAS? Are you seeing a doctor in Houston for this treatment? > > > > We are in Austin and have been unable to find anyone with any real PANDAS experience or anyone willing to work with Dr. K in Chicago to treat us here. My oldest daughter is going to Chicago next week for IVIG. My younger daughter also has PANDAS but is much worse and cannot travel to Chicago for treatment. We are trying to find a doctor closer, like Houston, Dallas, etc. that we could take my younger daughter to. Does the doctor you see treat with IVIG? > > > > Thanks for your help! > > > Deneen Fowler > > > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com <http://www.avg.com/> > Version: 9.0.819 / Virus Database: 271.1.1/2883 - Release Date: 05/19/10 01:26:00 > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.829 / Virus Database: 271.1.1/2922 - Release Date: 06/06/10 13:35:00 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 I will send Beth (author of " Saving Sammy " ) a message to remove her name. She always checks her messages and responds as well. She went to the OC Conference but I'm sure she will take care of it when she returns. Deneen > > > > Deneen, > > > > > > > > I wonder if you could do me a favor. Someone has mistakenly put my daughter’s doctor, Quentin Collard down as a doctor that treats PANDAS. She DOES NOT treat PANDAS. She has been my daughter’s pd since birth and has helped me some with the antibiotics. When I went with my daughter for an ear infection about 2 weeks ago, she asked me if I had put her name on the internet as someone that treats PANDAS. I told her no. She said she is getting calls from all over asking for help, which she cannot give. If you know how to help get this mistake corrected, I would so appreciate it. We don’t want to lose her as a pd. I found out yesterday from someone on the Latitudes site named Suzan had posted her as treating PANDAS. I don’t know who she got this from, but I need to get it corrected. I tried to get on the Latitudes site, but am having trouble. If there is any way you can help me, I would really appreciate it. > > > > > > > > Beth in Houston > > > > > > > > From: Deneen Fowler [mailto:dfowler39@] > > Sent: Sunday, May 30, 2010 4:57 PM > > To: Beth Henry > > Subject: Re: PANDAS? > > > > > > > > My girls are 15 & 13. My oldest just returned from Chicago where she got IVIG from Dr. K. Praying for her full recovery. > > > > > > > > It's nice that you have a pediatrician who is willing to work with you and learn about it. Our pediatrician wouldn't have anything to do with it. > > > > > > > > Don't know if you are aware of these doctors who are listed as treating PANDAS (got their names from two different lists for PANDAS). The only doctor I have talked to on this list is the first one, Dr. Rao (talked with Lori in his office). I'm trying to get a phone call set up with him to see about treating our youngest daughter (who has worse OCD than older daughter) in Plano instead of going to Chicago. > > > > > > > > Best of luck to you and your family. > > > > > > > > Dr. Sesagiri Rao, MD > > > > Allergy, Asthma and Immune Disorders > > > > 3016 Communication Parkway, Suite 100 > > > > Plano, TX, 75093-8906 > > > > > > > > > > > > Dr. Owen, MD > > > > Pediatric Neurologist > > > > 7777 Forest Lane, Suite A307 > > > > Dallas, TX, 75230-2507 > > > > > > > > > > > > Skiles, MD > > > > www.stonebriarent.com > > > > 5575 Warren Parkway, Suite 104 > > > > Frisco, TX, 75034 > > > > > > > > > > > > Dr. Mark Mazade > > > > Pediatric Infectious Disease Specialist with Cook Children's Medical Center > > 800 7th Ave > > > > Fort Worth, TX, 76104-2704 > > > > > > > > Dr. Wilfred Raine > > > > Pediatrician in the Cook Children's group. > > 848 W. St. > > > > Arlington, TX, 76013 > > > > > > > > > > > > Quentin Collard > > Medical Center on Fannin Street > > > > Houston, TX > > . > > > > Deneen > > > > > > > > > > > > > > > > _____ > > > > From: Beth Henry <mbgwhenry@> > > To: Deneen Fowler <dfowler39@> > > Sent: Wed, May 19, 2010 10:37:44 PM > > Subject: RE: PANDAS? > > > > Deneen, > > > > > > > > No unfortunately we don’t have a doctor for the IVIG. I have been so very lucky that my pediatrician is working with me on it. When my daughter was younger she had strep A twice and the other strep constant. She had 2 little episodes (noting big), one where her panties were too tight (they were actually hanging, as we had to keep getting bigger) and another similar. She had strep at these times. The doctor said at that time she thought it might possibly be at little bit of obsessive behavior. She said that there had been some studies done recently (this was about 5 years ago) that showed a link between strep and some of this type of behavior. At the time I didn’t think much of it as I was totally in the dark about OCD. So when our dd started with her horrible worry loop last August, I went to the computer frantic, trying to figure out what was happening to her. Up popped the PANDAS and the OCD and a light clicked. Our dd had just come home from camp with a horrible eye infection, either strep or staph. It took 3 weeks with medication to clear. And that started our uphill battle with worry loops, bad thoughts, etc. Because she saw the other and has a chart full of strep and pneumonia on our dd, she is working with me on the antibiotic s. Our dd got so bad with bad thoughts the end of February, I was so scared, but she once again had gotten a sinus infection, from of all people the therapist we were seeing. We had an appt. a few days before and she was sick as a dog. We added another antibiotic to the mix and down it went as she got better. I later added the Inositol. Our doctor is learning with me, but she is really the only one in the practice that will. > > > > > > > > How old are your girls? Ours is 9. > > > > > > > > Beth > > > > > > > > From: Deneen Fowler [mailto:dfowler39@] > > Sent: Wednesday, May 19, 2010 9:07 PM > > To: mbgwhenry@ > > Subject: PANDAS? > > > > > > > > Beth, > > > > > > > > Is your daughter being treated for PANDAS? Are you seeing a doctor in Houston for this treatment? > > > > > > > > We are in Austin and have been unable to find anyone with any real PANDAS experience or anyone willing to work with Dr. K in Chicago to treat us here. My oldest daughter is going to Chicago next week for IVIG. My younger daughter also has PANDAS but is much worse and cannot travel to Chicago for treatment. We are trying to find a doctor closer, like Houston, Dallas, etc. that we could take my younger daughter to. Does the doctor you see treat with IVIG? > > > > > > > > Thanks for your help! > > > > > > Deneen Fowler > > > > > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com <http://www.avg.com/> > > Version: 9.0.819 / Virus Database: 271.1.1/2883 - Release Date: 05/19/10 01:26:00 > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.829 / Virus Database: 271.1.1/2922 - Release Date: 06/06/10 13:35:00 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 I checked the doctor list on the Saving Sammy facebook page and she was not on there. I sent an email on the Latitudes site and asked them to remove her if she is on their list as she does not treat PANDAS. Hopefully that will take care of it. Deneen > > > > Deneen, > > > > > > > > I wonder if you could do me a favor. Someone has mistakenly put my daughter’s doctor, Quentin Collard down as a doctor that treats PANDAS. She DOES NOT treat PANDAS. She has been my daughter’s pd since birth and has helped me some with the antibiotics. When I went with my daughter for an ear infection about 2 weeks ago, she asked me if I had put her name on the internet as someone that treats PANDAS. I told her no. She said she is getting calls from all over asking for help, which she cannot give. If you know how to help get this mistake corrected, I would so appreciate it. We don’t want to lose her as a pd. I found out yesterday from someone on the Latitudes site named Suzan had posted her as treating PANDAS. I don’t know who she got this from, but I need to get it corrected. I tried to get on the Latitudes site, but am having trouble. If there is any way you can help me, I would really appreciate it. > > > > > > > > Beth in Houston > > > > > > > > From: Deneen Fowler [mailto:dfowler39@] > > Sent: Sunday, May 30, 2010 4:57 PM > > To: Beth Henry > > Subject: Re: PANDAS? > > > > > > > > My girls are 15 & 13. My oldest just returned from Chicago where she got IVIG from Dr. K. Praying for her full recovery. > > > > > > > > It's nice that you have a pediatrician who is willing to work with you and learn about it. Our pediatrician wouldn't have anything to do with it. > > > > > > > > Don't know if you are aware of these doctors who are listed as treating PANDAS (got their names from two different lists for PANDAS). The only doctor I have talked to on this list is the first one, Dr. Rao (talked with Lori in his office). I'm trying to get a phone call set up with him to see about treating our youngest daughter (who has worse OCD than older daughter) in Plano instead of going to Chicago. > > > > > > > > Best of luck to you and your family. > > > > > > > > Dr. Sesagiri Rao, MD > > > > Allergy, Asthma and Immune Disorders > > > > 3016 Communication Parkway, Suite 100 > > > > Plano, TX, 75093-8906 > > > > > > > > > > > > Dr. Owen, MD > > > > Pediatric Neurologist > > > > 7777 Forest Lane, Suite A307 > > > > Dallas, TX, 75230-2507 > > > > > > > > > > > > Skiles, MD > > > > www.stonebriarent.com > > > > 5575 Warren Parkway, Suite 104 > > > > Frisco, TX, 75034 > > > > > > > > > > > > Dr. Mark Mazade > > > > Pediatric Infectious Disease Specialist with Cook Children's Medical Center > > 800 7th Ave > > > > Fort Worth, TX, 76104-2704 > > > > > > > > Dr. Wilfred Raine > > > > Pediatrician in the Cook Children's group. > > 848 W. St. > > > > Arlington, TX, 76013 > > > > > > > > > > > > Quentin Collard > > Medical Center on Fannin Street > > > > Houston, TX > > . > > > > Deneen > > > > > > > > > > > > > > > > _____ > > > > From: Beth Henry <mbgwhenry@> > > To: Deneen Fowler <dfowler39@> > > Sent: Wed, May 19, 2010 10:37:44 PM > > Subject: RE: PANDAS? > > > > Deneen, > > > > > > > > No unfortunately we don’t have a doctor for the IVIG. I have been so very lucky that my pediatrician is working with me on it. When my daughter was younger she had strep A twice and the other strep constant. She had 2 little episodes (noting big), one where her panties were too tight (they were actually hanging, as we had to keep getting bigger) and another similar. She had strep at these times. The doctor said at that time she thought it might possibly be at little bit of obsessive behavior. She said that there had been some studies done recently (this was about 5 years ago) that showed a link between strep and some of this type of behavior. At the time I didn’t think much of it as I was totally in the dark about OCD. So when our dd started with her horrible worry loop last August, I went to the computer frantic, trying to figure out what was happening to her. Up popped the PANDAS and the OCD and a light clicked. Our dd had just come home from camp with a horrible eye infection, either strep or staph. It took 3 weeks with medication to clear. And that started our uphill battle with worry loops, bad thoughts, etc. Because she saw the other and has a chart full of strep and pneumonia on our dd, she is working with me on the antibiotic s. Our dd got so bad with bad thoughts the end of February, I was so scared, but she once again had gotten a sinus infection, from of all people the therapist we were seeing. We had an appt. a few days before and she was sick as a dog. We added another antibiotic to the mix and down it went as she got better. I later added the Inositol. Our doctor is learning with me, but she is really the only one in the practice that will. > > > > > > > > How old are your girls? Ours is 9. > > > > > > > > Beth > > > > > > > > From: Deneen Fowler [mailto:dfowler39@] > > Sent: Wednesday, May 19, 2010 9:07 PM > > To: mbgwhenry@ > > Subject: PANDAS? > > > > > > > > Beth, > > > > > > > > Is your daughter being treated for PANDAS? Are you seeing a doctor in Houston for this treatment? > > > > > > > > We are in Austin and have been unable to find anyone with any real PANDAS experience or anyone willing to work with Dr. K in Chicago to treat us here. My oldest daughter is going to Chicago next week for IVIG. My younger daughter also has PANDAS but is much worse and cannot travel to Chicago for treatment. We are trying to find a doctor closer, like Houston, Dallas, etc. that we could take my younger daughter to. Does the doctor you see treat with IVIG? > > > > > > > > Thanks for your help! > > > > > > Deneen Fowler > > > > > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com <http://www.avg.com/> > > Version: 9.0.819 / Virus Database: 271.1.1/2883 - Release Date: 05/19/10 01:26:00 > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.829 / Virus Database: 271.1.1/2922 - Release Date: 06/06/10 13:35:00 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Hi Deana, I have not studied probiotics so feel free to share anything about them, as I am wondering what you meant by being careful not to use one that contains a strep strain?? Thanks, > > > > This is an intro of sorts, but ties into Dr. Collard. My 9yo son was diagnosed > > >Aspergers at age 5 by Texas Childrens, got scarlet fever which the ped would not > > > >treat for 10 days until the lab results came back, and resulted in PANDAS. We > >have been going to see Lucas at Thoughtful House in Austin, and they > >diagnosed the PANDAS at age 7/8, and we've had good luck. Recently saw Dr. > >Collard's name as a local Houston ped who treats PANDAS, went to see her, and > >she was adamant about not only not treating, but not sure it exists, and in > >direct conflict with Thoughtful House overall. So Beth in Houston, you're > >right...we need to get her name off the list! Have > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2010 Report Share Posted July 19, 2010 Deana, Could you tell me where to find this newslwtter, please? I make my own homemade yogurt. All yogurt in order to be classified by yogurt by the USDA must contain S.Thermophilus and L.Bulgaricus. Mine contains those 2 and Acidophilus. I have been afraid to give it to my son who has PANDAS and no immunity to strep. But S. thermophilus is also widely used to ferment cheese as well. I want to give him this yogurt, but have been advised by other moms not to. I am going to speak to Dr. B this week and want to discuss it with him. I would appreciate more info and if I could find this newsletter online. Thanks, Terry in RI > > > > > > This is an intro of sorts, but ties into Dr. Collard. My 9yo son was > >diagnosed > > > > > > >Aspergers at age 5 by Texas Childrens, got scarlet fever which the ped would > >not > > > > > > > >treat for 10 days until the lab results came back, and resulted in PANDAS. We > > > >have been going to see Lucas at Thoughtful House in Austin, and they > > >diagnosed the PANDAS at age 7/8, and we've had good luck. Recently saw Dr. > > >Collard's name as a local Houston ped who treats PANDAS, went to see her, and > > > >she was adamant about not only not treating, but not sure it exists, and in > > >direct conflict with Thoughtful House overall. So Beth in Houston, you're > > >right...we need to get her name off the list! Have > > > > > > > Quote Link to comment Share on other sites More sharing options...
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