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Today Show - Sneezing Tic

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I also wanted to let you know that I spoke with Beth, "Sammys" mom, at great lengths, yesterday and Lauren and I will be meeting with some specilists next week. I am in the process of creating a blog so that I can keep everyone informed of our progress. I will let you know of the link when it's up and running. And, yes Lauren's "sneeze" is more tic like, 1/2 cough and 1/2 sneeze but I do want to emphasize that is started as a true productive sneeze with a head cold at onset, a little more than 3 weeks ago and has evolved to what you cuurently see in the media segments.

 

Also want to send a huge hug and thank you to Carol Sidofsky in Winter Park, CO., until last Tuesday, she did not know my daughter or myself even exsisted, it had been through the enourmouse time and effort she has put forth researching and trying to help us that we have found this forum.

 

Just posted this reply on another thread in reference to my daughter..

 

and here I am...

 

I feel the need to clarify a few things..

 

The first time we have ever heard the acronym "PANDAS" was late last Monday evening when a mother of my daughter’s classmates saw our local TV station cover Lauren's story. Prior to that we had been to see the director of the pediatric neurology clinic at CHKD hospital and the Pediatric ENTS at CHKD, been to our regular physician a hypnotist and psychotherapist, many, many times over the last 3 weeks.

 

NO ONE MENTIONED OCD, PANDAS, STREP VIRUS, etc in this process. We were routinely told that is was psychosomatic or intractable psychogenic sneezing, which trust me, if you research, Google, etc..you find VERY LITTLE information besides that it is a VERY rare disease with only 40 reported cases in the last 60 years! Our local “specilists/physicans” knew nothing about this!

 

Out of pure frustration over not finding any specific information on this topic and a trues mothers love for my daughter to move mountains to help her (I can even begin to tell you how helpless I feel right now), I sat down last Sunday morning and just stated emailing EVERYBODY! Oprah, Dr. OZ, Sanjay Gupta, my local news channels thinking maybe someone would contact me and say they new of someone that could help.

 

NEVER could I have imagined what would have taken place, the next morning and since then. Beginning at 7 am, Monday my phone started ringing from all three of our local television stations. They wanted to do a segment on my daughter and our frustrations with finding answers and they did that, I believe with grace and sensitivity to our family. Within 12 hours of the local story appearing on TV Monday evening, we were contacted by all three major networks/morning shows asking us to be on the show the next morning (Tuesday morning). Coincidentally, I was yet at another appointment with Lauren with the pediatric ENT at CHKD who was trying to convince me that "this was all in our daughters head, that you should go home and tell her I found the magic cure for her, lie to her use trickery, then come back to my office in a few days and I will squirt saline up her nose and trick her out of it"! Hard to believe isn't it? I don't blame the doctors, thus far. I think they were trying to help, they just didn't know how. We had already been encouraged by other local physicians’ who had tried to help Lauren to seek out media attention to find anybody out here who could help because they had no answers and did not know who to refer us to. It was at that moment, as I stood in the parking lot of the children's hospital, full of emotion. frustrated, mad, disappointed, hopeless, helpless that the local reported contacted me and said the Today Show wanted to cover my daughter’s story and wanted to help us find us somebody to help her. The rest is “media history”.

 

The irony here is that WE DON’T watch TV! We have 11 televisions in our house but with the exception Lauren’s fascination with cooking and animals and the Food Network/Animal planet, that’s all we watch! If you would have asked me who the host’s of the Today show was or who Nancy Snyderman was, three days ago, I would have been unable to answer.

 

I sit here physically and mentally exhausted while writing this post. The media attention my daughter condition is getting is incomprehensible. I can tell you that it has opened doors for us to get in touch with Dr. Leckman and others who can possible help my daughter. We know that there are SO many other families out there who have suffered and are suffering and will suffer through what we are experiencing right now and I am determined to not only help my daughter but help every parent and child who is trying to find the resources they need to correctly diagnose and treat their child.

 

I know you will never hear the “whole story” in a 7 minute or less segment on national television but I hope I have helped answers your questions. I know you all are just trying to help my daughter and we thank you from the bottom of our heart.

 

You may contact me directly at laurensneezing@gmail.com

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I think most people here can relate very well to how helpless you feel. Big hugs to you. I think the part of your story that now is so frustrating is how it could be that so many doctors out there are not aware of PANDAS let alone the ones who are aware but just refuse to acknowledge it is real. I think what you saw here in posts regarding this are just mom's who are exhausted from knowing what is wrong with their child but not being able to get the right help.

 

Best of luck to your family!

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Lauren'sMom, Hello and welcome! It sounds like you have been through a rollercoaster of events over these last few weeks and you must be so overwhelmed. I'm glad you found this forum and that you have been hooked up with doctors who can be really helpful. Dr. Leckman was one of the first to diagnose my son's PANDAS two years ago, and he is an extremely compassionate doctor and can be a great resource for you. You also might consider speaking with Beth Latimer, a pediatric neurologist in Bethesda, MD, who treats kids with PANDAS and has been helpful to many of us on this forum. You have done an amazing job of seeking out help and calling attention to your daughter's story and I believe you are on the right path to getting her well.

 

Ellen

 

Just posted this reply on another thread in reference to my daughter..

 

and here I am...

 

I feel the need to clarify a few things..

 

The first time we have ever heard the acronym "PANDAS" was late last Monday evening when a mother of my daughter’s classmates saw our local TV station cover Lauren's story. Prior to that we had been to see the director of the pediatric neurology clinic at CHKD hospital and the Pediatric ENTS at CHKD, been to our regular physician a hypnotist and psychotherapist, many, many times over the last 3 weeks.

 

NO ONE MENTIONED OCD, PANDAS, STREP VIRUS, etc in this process. We were routinely told that is was psychosomatic or intractable psychogenic sneezing, which trust me, if you research, Google, etc..you find VERY LITTLE information besides that it is a VERY rare disease with only 40 reported cases in the last 60 years! Our local “specilists/physicans” knew nothing about this!

 

Out of pure frustration over not finding any specific information on this topic and a trues mothers love for my daughter to move mountains to help her (I can even begin to tell you how helpless I feel right now), I sat down last Sunday morning and just stated emailing EVERYBODY! Oprah, Dr. OZ, Sanjay Gupta, my local news channels thinking maybe someone would contact me and say they new of someone that could help.

 

NEVER could I have imagined what would have taken place, the next morning and since then. Beginning at 7 am, Monday my phone started ringing from all three of our local television stations. They wanted to do a segment on my daughter and our frustrations with finding answers and they did that, I believe with grace and sensitivity to our family. Within 12 hours of the local story appearing on TV Monday evening, we were contacted by all three major networks/morning shows asking us to be on the show the next morning (Tuesday morning). Coincidentally, I was yet at another appointment with Lauren with the pediatric ENT at CHKD who was trying to convince me that "this was all in our daughters head, that you should go home and tell her I found the magic cure for her, lie to her use trickery, then come back to my office in a few days and I will squirt saline up her nose and trick her out of it"! Hard to believe isn't it? I don't blame the doctors, thus far. I think they were trying to help, they just didn't know how. We had already been encouraged by other local physicians’ who had tried to help Lauren to seek out media attention to find anybody out here who could help because they had no answers and did not know who to refer us to. It was at that moment, as I stood in the parking lot of the children's hospital, full of emotion. frustrated, mad, disappointed, hopeless, helpless that the local reported contacted me and said the Today Show wanted to cover my daughter’s story and wanted to help us find us somebody to help her. The rest is “media history”.

 

The irony here is that WE DON’T watch TV! We have 11 televisions in our house but with the exception Lauren’s fascination with cooking and animals and the Food Network/Animal planet, that’s all we watch! If you would have asked me who the host’s of the Today show was or who Nancy Snyderman was, three days ago, I would have been unable to answer.

 

I sit here physically and mentally exhausted while writing this post. The media attention my daughter condition is getting is incomprehensible. I can tell you that it has opened doors for us to get in touch with Dr. Leckman and others who can possible help my daughter. We know that there are SO many other families out there who have suffered and are suffering and will suffer through what we are experiencing right now and I am determined to not only help my daughter but help every parent and child who is trying to find the resources they need to correctly diagnose and treat their child.

 

I know you will never hear the “whole story” in a 7 minute or less segment on national television but I hope I have helped answers your questions. I know you all are just trying to help my daughter and we thank you from the bottom of our heart.

 

You may contact me directly at laurensneezing@gmail.com

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Hi Lauren's mom,

 

Welcome I'm glad you found this forum! In restrospect, do you think your dd had any undiagnosed PANDAS episodes in the past? Urinary frequency, OCD, anxiety, sensory defensiveness...or other movements that might have been tics? I'm just wondering if this isn't her first episode. How old is your dd now?

 

Did they end up doing a throat culture? For us, we cultured everyone in the family when we first learned of PANDAS. Both our PANDAS dd7 (anorexia, OCD, tics, depression, anxiety, emotional lability) and her sister dd5 were positive (an assymptomatic carrier). We also did a perianal culture on our PANDAS dd and that was also positive (girls can also get vaginal strep). Sometimes cultures are neg. but strep is hiding out in places that aren't easily cultured (like the sinuses). I recommend you culture all family members since PANDAS dd didn't really start to recover until her sister was also cleared of her strep.

 

ASO/anti-dnase b can be useful if all the cultures are neg...but those can also be low in PANDAS kids. Ours were low despite the positive cultures and PANDAS severe enough to require hospitalization (due to anorexia, dropped from 50 pounds to 42pounds in a 2 week period). Here's a link on strep titers (read Aug 24 and Jan 11 posts) when you feel up to it. http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Here are some other links (you may have already found)

http://webpediatrics.com/pandas.html

http://www.pandasnetwork.org/

 

Like others have said, I would also encourage you to have your dd's serum tested at Dr. Madeleine Cunningham's lab (Univ. of Oklahoma) when it re-opens in January (the lab is currently closed for the holidays).

 

As a recommendation that might sound really offbeat...you might try giving your dd some advil (typical dose...how much does your dd weigh?) . Some parents on this forum notice that it temporarily helps with symptoms (tics, mood etc.). Our dd (54 pounds) can take 200mg up to 3-4x daily (short term). If your dd is bigger, she could take more. Worth, trying...if nothing else it might give you guys some kind of break! We don't know why it helps but we theorize it does something to cut down inflammation in the brain or basal ganglia (or blood brain barrier?).

 

Many parents on this forum also have their children on long term antibiotics (like Beth Maloney)....to prevent future strep/infections and get rid of residual strep (perhaps intracellular). Like Beth, sometimes, a good trial of antibiotics (even if you aren't sure if there is strep) is what is needed...sometimes in conjunction (later) with IVIG or PEX.

 

Good luck...let us know how things go (looking forward to the blog).

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Dear Lauren's Mom--

Welcome!! You dear woman, most of us have experienced sudden change in our child that leaves us (and the medical field) baffled-- I hope that whether your dear child does, or does not have Pandas-- that you find the right remedy to address this sudden onset "ticcing" right away.

 

Regardless, all the best to you, your daughter--and I think you had the courage of a lion-mom to go the route of public attention, so early in the game, and it may have saved your daughter further difficulty. I pray so--may you find the answer/solution soon--

 

All the best,

TMom

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Dear caring people here, and Lynn, mother of Lauren, who is just like all you wonderful parents--never giving up until getting answers, and helping your children!

 

I found this excellent forum here ( ACN Forums > Advanced, Complementary, and Alternative Approaches ), by "googling" about sneezing, tics, and PANDAS. I was happy to share a link to this thread (topic) in your great forum with Lynn, to help her get answers as fast as possible. Now, I'm happy to see that she's part of this forum! :-)

 

I will be adding several links to my VCD (vocal cord dysfunction) website, later today, about PANDAS & PITANDS, because "tics" can be a mimic of VCD ("laryngospasms")!

 

I not only believe in PANDAS & PITANDS, but also think that having a gluten sensitivity &/or sensitivity to other dietary proteins, like milk proteins (casein, whey, etc.), &/or soy proteins, &/or corn proteins, &/or yeast proteins, &/or egg proteins, etc. etc., can probably aggravate PANDAS & PITANDS.

 

I'm sure all or many of you already knew this, but just in case some of you didn't know about Dr. Kenneth Fine's very informative "EnteroLab" website, here's a link:

www.finerhealth.com (I get no kickback!).

 

Dr. Kenneth Fine (gastroenterologist) in Dallas, Texas, himself, has a non-Celiac type of gluten sensitivity, and his lab does non-invasive stool sample testing, looking for excessively large numbers of antibodies to gluten, milk proteins, soy proteins, yeast proteins, & egg proteins. He's working on adding a corn protein sensitivity test.

 

Keep up the good work, everyone!

 

Sincerely,

Carol (concerned lady)/former nurse, former VCD (vocal cord dysfunction) patient

Colorado

http://cantbreathesuspectvcd.com

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Hi laurenjohnsonsmom:

 

I'd like to add my welcome here too and thank you and your daughter for your collective courage in facing the media. Whether you knew it or not, you were helping all of us on this forum (and maybe even more so, those who haven't yet found this forum) who struggle with an illness that the medical community at large is either ignorant of or skeptical and dismissive about.

 

Whether your child has PANDAS or something else should come out over time. The symptoms certainly are consistent with PANDAS.

 

In the show it was raised that you were already connected with Dr. Leckman and thus are probably pretty well versed at this point about PANDAS. You might find the brief post on the history of PANDAS helpful : http://www.latitudes.org/forums/index.php?...amp;#entry36300

 

The current working assumptions are that PANDAS is similar to Sydenham Chorea and has three main components:

  • an immune reaction to a streptococcal infection that produces a faulty B-cell antibody response (trigger) -- a focus of Kirvan/Swedo
  • a failure of the T-reg and B-reg cells to suppress the faulty antibodies -- a focus of Leckman
  • a breach of the blood-brain barrier that allows the antibodies to interact with neuronal tissue (visibility) -- a focus of Yaddanapudi

The antibodies tend to remain in the blood system for 4-6 weeks (even after the removal of the original antigen (i.e., strep)). Many on this forum think the effectiveness of high-dose antibiotics (augmentin or azithrmycin) is that these help against strains of strep that go intracellular (acting more like a virus) and preventing the immune system from "calming down." In addition, many on the forum have found difficiencies in Igg immune response indicating that the traditional dosage of antibiotics (for those with healthy immune systems) may be insufficient for these children.

 

Hopefully your association with Dr. Leckman will help NIHM and others focus more research on this very important topic.

 

Regards,

 

Buster

 

 

I am in the process of creating a blog so that I can keep everyone informed of our progress. I will let you know of the link when it's up and running.

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Beth is so kind. She has emailed me many times just out of curiosity of how we are doing. I am glad you have found your way here. There are so many smart, compassionate people here who are helping support one another. When I saw you on Inside Edition for the first time I have to admit I was screaming into the TV that looks like a tic/compulsion. This whole forum can be of help to you, even the TS forum, if you find it is PANDAS or Tourettes or just tics. I pray your beautiful and composed daughter can find some relief soon. It has been a very busy time for you all. Ours came on overnight like your daughter's but with blinking and finger chorea moevements and strep throat. His fingers did move in his sleep also. It has taken us 7 yrs to find information. You have made your way quickly. It seems you have been set up with some of the best researchers/Dr's. Please keep us posted of your progress with them. My son's tics have waxed and waned over time and do change and are viral related too. We have found medications seem to help reduce the tics and behaviors. His is also mood related and I didn't hear you mention behaviors. However the compulsions can really set them off when they can't be met. Just wanted to say hi, and welcome. Sorry you are having to go down this path. You are not alone.

 

Michele

I also wanted to let you know that I spoke with Beth, "Sammys" mom, at great lengths, yesterday and Lauren and I will be meeting with some specilists next week. I am in the process of creating a blog so that I can keep everyone informed of our progress. I will let you know of the link when it's up and running. And, yes Lauren's "sneeze" is more tic like, 1/2 cough and 1/2 sneeze but I do want to emphasize that is started as a true productive sneeze with a head cold at onset, a little more than 3 weeks ago and has evolved to what you cuurently see in the media segments.

 

Also want to send a huge hug and thank you to Carol Sidofsky in Winter Park, CO., until last Tuesday, she did not know my daughter or myself even exsisted, it had been through the enourmouse time and effort she has put forth researching and trying to help us that we have found this forum.

 

Just posted this reply on another thread in reference to my daughter..

 

and here I am...

 

I feel the need to clarify a few things..

 

The first time we have ever heard the acronym "PANDAS" was late last Monday evening when a mother of my daughter’s classmates saw our local TV station cover Lauren's story. Prior to that we had been to see the director of the pediatric neurology clinic at CHKD hospital and the Pediatric ENTS at CHKD, been to our regular physician a hypnotist and psychotherapist, many, many times over the last 3 weeks.

 

NO ONE MENTIONED OCD, PANDAS, STREP VIRUS, etc in this process. We were routinely told that is was psychosomatic or intractable psychogenic sneezing, which trust me, if you research, Google, etc..you find VERY LITTLE information besides that it is a VERY rare disease with only 40 reported cases in the last 60 years! Our local “specilists/physicans” knew nothing about this!

 

Out of pure frustration over not finding any specific information on this topic and a trues mothers love for my daughter to move mountains to help her (I can even begin to tell you how helpless I feel right now), I sat down last Sunday morning and just stated emailing EVERYBODY! Oprah, Dr. OZ, Sanjay Gupta, my local news channels thinking maybe someone would contact me and say they new of someone that could help.

 

NEVER could I have imagined what would have taken place, the next morning and since then. Beginning at 7 am, Monday my phone started ringing from all three of our local television stations. They wanted to do a segment on my daughter and our frustrations with finding answers and they did that, I believe with grace and sensitivity to our family. Within 12 hours of the local story appearing on TV Monday evening, we were contacted by all three major networks/morning shows asking us to be on the show the next morning (Tuesday morning). Coincidentally, I was yet at another appointment with Lauren with the pediatric ENT at CHKD who was trying to convince me that "this was all in our daughters head, that you should go home and tell her I found the magic cure for her, lie to her use trickery, then come back to my office in a few days and I will squirt saline up her nose and trick her out of it"! Hard to believe isn't it? I don't blame the doctors, thus far. I think they were trying to help, they just didn't know how. We had already been encouraged by other local physicians’ who had tried to help Lauren to seek out media attention to find anybody out here who could help because they had no answers and did not know who to refer us to. It was at that moment, as I stood in the parking lot of the children's hospital, full of emotion. frustrated, mad, disappointed, hopeless, helpless that the local reported contacted me and said the Today Show wanted to cover my daughter’s story and wanted to help us find us somebody to help her. The rest is “media history”.

 

The irony here is that WE DON’T watch TV! We have 11 televisions in our house but with the exception Lauren’s fascination with cooking and animals and the Food Network/Animal planet, that’s all we watch! If you would have asked me who the host’s of the Today show was or who Nancy Snyderman was, three days ago, I would have been unable to answer.

 

I sit here physically and mentally exhausted while writing this post. The media attention my daughter condition is getting is incomprehensible. I can tell you that it has opened doors for us to get in touch with Dr. Leckman and others who can possible help my daughter. We know that there are SO many other families out there who have suffered and are suffering and will suffer through what we are experiencing right now and I am determined to not only help my daughter but help every parent and child who is trying to find the resources they need to correctly diagnose and treat their child.

 

I know you will never hear the “whole story” in a 7 minute or less segment on national television but I hope I have helped answers your questions. I know you all are just trying to help my daughter and we thank you from the bottom of our heart.

 

You may contact me directly at laurensneezing@gmail.com

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WOW! I'm full of emotion! I can't believe how support and helpful you have all, been! I cannot find enough words to express our familly's gratitude.

 

 

I am going to try to continue to answers as many of your questions in one GIGANTIC post..here it goes!

 

Lauren has had ZERO "OCD behaviors" in the past; she has always suffered from "moderate social Anxiety" which runs deep through my husband's family. My husband suffers his sister, his father, etc..No history of Urinary frequency, OCD or sensory defensiveness. Lauren just turned 12 years old. I might note, until last year, Lauren was hardly ever sick. Last year, though she missed 26 days of school because she was sick, multiple times. I can't recall, (I am in the process of getting copies of her medical records), but I believe she was tested for strep at least once, and I believe she tested positive at least once, last school year. Lauren also received two inoculations/vaccinations in the last 6 months. Guardisil & her T-dap which is required by our school district prior to entering 6th grade. Until last year, Lauren was healthy, reached every developmental milestone, and is a bright, young lady.

 

I also can’t help but think that this has some relation to gender and hormones. Why? Because case report I have read concerning “intractable sneezing” always involves female gender and they fall into the 10-15 year age group. Lauren is “becoming a lady” and has had “hormonal changes” to her body, but has yet to start her menstrual period. Information on intractable sneezing is impossible to find. If any of you would like copies of the information I have, please send me your address and I will put it in the mail to you.

 

“Like others have said, I would also encourage you to have your dd's serum tested at Dr. Madeleine Cunningham's lab (Univ. of Oklahoma) when it re-opens in January (the lab is currently closed for the holidays).”

 

I am so disappointed to hear that Madeline’s lab is closed! Dr. Leckman and I just discussed her lab and we were going to send serum to her on Monday. Somebody please explain to me how she and her lab plays a part in all this!

 

“I just wish docs like Leckman, Nicoletti, Latimer, Swedo, etc... would be much more vocal and assertive about PANDAS!”

 

On the subject of Dr. Lechman. I don’t believe his likes to be in the media. Even if it helps bring awareness. I have never met him in person, yet but have spoke to him numerous times at great length. Maybe we need to let them do the research, utilizing thier strentghs and WE, the mom's that are so passionate in finding the answers and raising awareness should spearhead a campaign. That is OUR strength!

 

“Beth Latimer, a pediatric neurologist in Bethesda, MD, who treats kids with PANDAS and has been helpful to many of us on this forum. You have done an amazing job of seeking out help and calling attention to your daughter's story and I believe you are on the right path to getting her well.”

 

I will be calling her office on Monday. You can bet your “britches” on that!

 

“We also did a perianal culture on our PANDAS dd and that was also positive (girls can also get vaginal strep). Sometimes cultures are neg. but strep is hiding out in places that aren't easily cultured (like the sinuses).”

 

Hmmm...good point. We were vacation in the Florida Keys, early this summer and Lauren complained of a “burning sensation” when she went into the pool and/or ocean, etc..Not when she urinated, like with and UTI but just overall discomfort. Think it could be related?

 

I am grateful we have the “media’s eye”, for everyone’s sake. This is so much bigger than my daughter. It’s about everyone out there, especially those who are still “lost”, like me, just a week ago. Even if Lauren is diagnosed and cured overnight (ok, maybe that’s too hopeful), I am determined to fight to keep this exposure/momentum, so more people can find answers and recourses faster and easier. I will move a mountain if that’s what it takes!

 

I am trying to find balance here and I appreciate if you can lend your advice. As mothers...Lauren’s story has grown into a world-wide interest piece. It is everywhere! I have been contacted by the media, all over the globe (i.e.: Germany, Australia), not to mention all over the country. There are some good “daytime talk-shows” if that’s what you want to call it, who have contact me to have myself and Lauren on their show next week. I want to do them, because knowing what I know now, I want this exposure, not just to find as much help for my own daughter but to get the word and keep it out re: PANDAS and the other disorders possibly related to what my daughter is experiencing. What would YOU do? We will also be visiting Dr. Leckman late next week also, so I know I’m trying to shove 20 lbs. of potatoes in a 1 lb. bag...

 

 

 

 

 

Hi Lauren's mom,

 

Welcome I'm glad you found this forum! In restrospect, do you think your dd had any undiagnosed PANDAS episodes in the past? Urinary frequency, OCD, anxiety, sensory defensiveness...or other movements that might have been tics? I'm just wondering if this isn't her first episode. How old is your dd now?

 

Did they end up doing a throat culture? For us, we cultured everyone in the family when we first learned of PANDAS. Both our PANDAS dd7 (anorexia, OCD, tics, depression, anxiety, emotional lability) and her sister dd5 were positive (an assymptomatic carrier). We also did a perianal culture on our PANDAS dd and that was also positive (girls can also get vaginal strep). Sometimes cultures are neg. but strep is hiding out in places that aren't easily cultured (like the sinuses). I recommend you culture all family members since PANDAS dd didn't really start to recover until her sister was also cleared of her strep.

 

ASO/anti-dnase b can be useful if all the cultures are neg...but those can also be low in PANDAS kids. Ours were low despite the positive cultures and PANDAS severe enough to require hospitalization (due to anorexia, dropped from 50 pounds to 42pounds in a 2 week period). Here's a link on strep titers (read Aug 24 and Jan 11 posts) when you feel up to it. http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Here are some other links (you may have already found)

http://webpediatrics.com/pandas.html

http://www.pandasnetwork.org/

 

Like others have said, I would also encourage you to have your dd's serum tested at Dr. Madeleine Cunningham's lab (Univ. of Oklahoma) when it re-opens in January (the lab is currently closed for the holidays).

 

As a recommendation that might sound really offbeat...you might try giving your dd some advil (typical dose...how much does your dd weigh?) . Some parents on this forum notice that it temporarily helps with symptoms (tics, mood etc.). Our dd (54 pounds) can take 200mg up to 3-4x daily (short term). If your dd is bigger, she could take more. Worth, trying...if nothing else it might give you guys some kind of break! We don't know why it helps but we theorize it does something to cut down inflammation in the brain or basal ganglia (or blood brain barrier?).

 

Many parents on this forum also have their children on long term antibiotics (like Beth Maloney)....to prevent future strep/infections and get rid of residual strep (perhaps intracellular). Like Beth, sometimes, a good trial of antibiotics (even if you aren't sure if there is strep) is what is needed...sometimes in conjunction (later) with IVIG or PEX.

 

Good luck...let us know how things go (looking forward to the blog).

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I don't know if you saw this on Chlamydia etc. from another post (click on link)

http://www.latitudes.org/forums/index.php?showtopic=5918

 

Last year, though she missed 26 days of school because she was sick, multiple times. I can't recall, (I am in the process of getting copies of her medical records), but I believe she was tested for strep at least once, and I believe she tested positive at least once, last school year. Lauren also received two inoculations/vaccinations in the last 6 months. Guardisil & her T-dap which is required by our school district prior to entering 6th grade. Until last year, Lauren was healthy, reached every developmental milestone, and is a bright, young lady.
Intersting. I think this is all relevant.

 

I do wonder if your dd already had the "wheels" of PANDAS set in motion by her illnesses (strep plus) last year and then she was exposed to something at the sleepover, perhaps strep, perhaps something else.

 

Hmmm...good point. We were vacation in the Florida Keys, early this summer and Lauren complained of a “burning sensation” when she went into the pool and/or ocean, etc..Not when she urinated, like with and UTI but just overall discomfort. Think it could be related?

 

Possibly...it's pretty easy to have a doc do a swab/culture to check for vulvular vaginal strep (happens in pre-pubertial sp? girls).

 

I am trying to find balance here and I appreciate if you can lend your advice. As mothers...Lauren’s story has grown into a world-wide interest piece. It is everywhere! I have been contacted by the media, all over the globe (i.e.: Germany, Australia), not to mention all over the country. There are some good “daytime talk-shows” if that’s what you want to call it, who have contact me to have myself and Lauren on their show next week. I want to do them, because knowing what I know now, I want this exposure, not just to find as much help for my own daughter but to get the word and keep it out re: PANDAS and the other disorders possibly related to what my daughter is experiencing. What would YOU do? We will also be visiting Dr. Leckman late next week also, so I know I’m trying to shove 20 lbs. of potatoes in a 1 lb. bag...

 

If Lauren and you are up to it...I would say go for it! (Hey, she's out of school anyway :huh: )

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“Like others have said, I would also encourage you to have your dd's serum tested at Dr. Madeleine Cunningham's lab (Univ. of Oklahoma) when it re-opens in January (the lab is currently closed for the holidays).”

 

I am so disappointed to hear that Madeline’s lab is closed! Dr. Leckman and I just discussed her lab and we were going to send serum to her on Monday. Somebody please explain to me how she and her lab plays a part in all this!

 

Trying a short answer here.

 

Cunningham's lab is conducting a research trial where she is measuring anti-neuronal antibodies in blood serum and the interaction of those antibodies with neuroblastoma cells. It appears that those with PANDAS and Sydenham Chorea have elevated levels of CaM Kinase II activation ( http://www.pandasnetwork.org/Cunningham.NMpaper%5b1%5d.pdf ) relative to those with Tourette Syndrome. She also isolated several antibodies that seem to interfere with neuronal signalling ( http://intramural.nimh.nih.gov/pdn/pubs/pub-15.pdf ) .

 

While still a research test (and not yet a diagnostic test), a number of the parents here have participated in the study including having measurements before and after attempted treatments (such as use of antibiotics, prednisone, IVIG, PEX, ...).

 

At this point, PANDAS is thought to be the combination of three things:

  1. an immune response to GABHS causing B-cells to produce antibodies targeting the GlcNAC carbohydrate on GABHS
  2. a failure of the T-regulator and B-regulator immune suppressing cells that would normally stop this antibody
  3. a breach of the blood-brain barrier that allows these antibodies to reach and bond with neuronal tissue

So the Cunningham tests could help you know whether #1 and #2 are occurring.

 

Our dd9 also exhibited a ritualistic arm movement with a verbal tic during the exacerbation. We also believe she has had an underlying social anxiety that predated the sudden onset OCD.

 

Regards,

 

Buster

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How does Lauren feel about all this exposure and the possibility of more? I agree with EAMom, if she's up to it, do it. But also don't pack too much in, stress can sometimes worsen symptoms. Maybe talk to them about doing a one on one with her w/o an audience so she's not too overwhelmed.

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Lauren'sMom, I think that looking at the medical records and finding out if and when Lauren tested positive for strep will be very helpful as you try to figure this out. Also, I want to mention that my son's PANDAS started with a a strep when he was in fifth grade and became much worse after he had two vaccines (Chicken Pox and Hep A) in the summer before he started sixth grade. You may want to think back to see if you noticed any changes in the weeks following the vaccines. I am glad that you will have a chance to meet and talk with Dr. Leckman in person. When he met with us for the first time, he gave us three hours of his time and I was very impressed with his concern and genuine interest in our case. I'm glad you will be contacting Dr. Latimer as well because I think she will be helpful too. Also, I agree that if you and Lauren are up to it, I would continue to work with the media to update everyone on your story and spread the word about PANDAS. Best of luck and keep us posted.

 

Ellen

 

WOW! I'm full of emotion! I can't believe how support and helpful you have all, been! I cannot find enough words to express our familly's gratitude.

 

 

I am going to try to continue to answers as many of your questions in one GIGANTIC post..here it goes!

 

Lauren has had ZERO "OCD behaviors" in the past; she has always suffered from "moderate social Anxiety" which runs deep through my husband's family. My husband suffers his sister, his father, etc..No history of Urinary frequency, OCD or sensory defensiveness. Lauren just turned 12 years old. I might note, until last year, Lauren was hardly ever sick. Last year, though she missed 26 days of school because she was sick, multiple times. I can't recall, (I am in the process of getting copies of her medical records), but I believe she was tested for strep at least once, and I believe she tested positive at least once, last school year. Lauren also received two inoculations/vaccinations in the last 6 months. Guardisil & her T-dap which is required by our school district prior to entering 6th grade. Until last year, Lauren was healthy, reached every developmental milestone, and is a bright, young lady.

 

I also can’t help but think that this has some relation to gender and hormones. Why? Because case report I have read concerning “intractable sneezing” always involves female gender and they fall into the 10-15 year age group. Lauren is “becoming a lady” and has had “hormonal changes” to her body, but has yet to start her menstrual period. Information on intractable sneezing is impossible to find. If any of you would like copies of the information I have, please send me your address and I will put it in the mail to you.

 

“Like others have said, I would also encourage you to have your dd's serum tested at Dr. Madeleine Cunningham's lab (Univ. of Oklahoma) when it re-opens in January (the lab is currently closed for the holidays).”

 

I am so disappointed to hear that Madeline’s lab is closed! Dr. Leckman and I just discussed her lab and we were going to send serum to her on Monday. Somebody please explain to me how she and her lab plays a part in all this!

 

“I just wish docs like Leckman, Nicoletti, Latimer, Swedo, etc... would be much more vocal and assertive about PANDAS!”

 

On the subject of Dr. Lechman. I don’t believe his likes to be in the media. Even if it helps bring awareness. I have never met him in person, yet but have spoke to him numerous times at great length. Maybe we need to let them do the research, utilizing thier strentghs and WE, the mom's that are so passionate in finding the answers and raising awareness should spearhead a campaign. That is OUR strength!

 

“Beth Latimer, a pediatric neurologist in Bethesda, MD, who treats kids with PANDAS and has been helpful to many of us on this forum. You have done an amazing job of seeking out help and calling attention to your daughter's story and I believe you are on the right path to getting her well.”

 

I will be calling her office on Monday. You can bet your “britches” on that!

 

“We also did a perianal culture on our PANDAS dd and that was also positive (girls can also get vaginal strep). Sometimes cultures are neg. but strep is hiding out in places that aren't easily cultured (like the sinuses).”

 

Hmmm...good point. We were vacation in the Florida Keys, early this summer and Lauren complained of a “burning sensation” when she went into the pool and/or ocean, etc..Not when she urinated, like with and UTI but just overall discomfort. Think it could be related?

 

I am grateful we have the “media’s eye”, for everyone’s sake. This is so much bigger than my daughter. It’s about everyone out there, especially those who are still “lost”, like me, just a week ago. Even if Lauren is diagnosed and cured overnight (ok, maybe that’s too hopeful), I am determined to fight to keep this exposure/momentum, so more people can find answers and recourses faster and easier. I will move a mountain if that’s what it takes!

 

I am trying to find balance here and I appreciate if you can lend your advice. As mothers...Lauren’s story has grown into a world-wide interest piece. It is everywhere! I have been contacted by the media, all over the globe (i.e.: Germany, Australia), not to mention all over the country. There are some good “daytime talk-shows” if that’s what you want to call it, who have contact me to have myself and Lauren on their show next week. I want to do them, because knowing what I know now, I want this exposure, not just to find as much help for my own daughter but to get the word and keep it out re: PANDAS and the other disorders possibly related to what my daughter is experiencing. What would YOU do? We will also be visiting Dr. Leckman late next week also, so I know I’m trying to shove 20 lbs. of potatoes in a 1 lb. bag...

 

 

 

 

 

Hi Lauren's mom,

 

Welcome I'm glad you found this forum! In restrospect, do you think your dd had any undiagnosed PANDAS episodes in the past? Urinary frequency, OCD, anxiety, sensory defensiveness...or other movements that might have been tics? I'm just wondering if this isn't her first episode. How old is your dd now?

 

Did they end up doing a throat culture? For us, we cultured everyone in the family when we first learned of PANDAS. Both our PANDAS dd7 (anorexia, OCD, tics, depression, anxiety, emotional lability) and her sister dd5 were positive (an assymptomatic carrier). We also did a perianal culture on our PANDAS dd and that was also positive (girls can also get vaginal strep). Sometimes cultures are neg. but strep is hiding out in places that aren't easily cultured (like the sinuses). I recommend you culture all family members since PANDAS dd didn't really start to recover until her sister was also cleared of her strep.

 

ASO/anti-dnase b can be useful if all the cultures are neg...but those can also be low in PANDAS kids. Ours were low despite the positive cultures and PANDAS severe enough to require hospitalization (due to anorexia, dropped from 50 pounds to 42pounds in a 2 week period). Here's a link on strep titers (read Aug 24 and Jan 11 posts) when you feel up to it. http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Here are some other links (you may have already found)

http://webpediatrics.com/pandas.html

http://www.pandasnetwork.org/

 

Like others have said, I would also encourage you to have your dd's serum tested at Dr. Madeleine Cunningham's lab (Univ. of Oklahoma) when it re-opens in January (the lab is currently closed for the holidays).

 

As a recommendation that might sound really offbeat...you might try giving your dd some advil (typical dose...how much does your dd weigh?) . Some parents on this forum notice that it temporarily helps with symptoms (tics, mood etc.). Our dd (54 pounds) can take 200mg up to 3-4x daily (short term). If your dd is bigger, she could take more. Worth, trying...if nothing else it might give you guys some kind of break! We don't know why it helps but we theorize it does something to cut down inflammation in the brain or basal ganglia (or blood brain barrier?).

 

Many parents on this forum also have their children on long term antibiotics (like Beth Maloney)....to prevent future strep/infections and get rid of residual strep (perhaps intracellular). Like Beth, sometimes, a good trial of antibiotics (even if you aren't sure if there is strep) is what is needed...sometimes in conjunction (later) with IVIG or PEX.

 

Good luck...let us know how things go (looking forward to the blog).

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Lauren also received two inoculations/vaccinations in the last 6 months. Guardisil & her T-dap which is required by our school district prior to entering 6th grade. Until last year, Lauren was healthy, reached every developmental milestone, and is a bright, young lady.

 

laurensmom,

some of us were wondering if your daughter had vaccinations recently. since your daughter didn't have any other problems or behaviors that are considered symptoms of PANDAS, it is very possible that the vaccinations have brought this on. especially if you have had two in a close period of time, or worse, at the same time. if she had any flu shot on top of that, even more suspect. That said, it doesn't mean this tic is permanent, it is vry possibel that after a few weeks or months, it will calm down. she may very well have had a reaction to the vaccines and this has been reported by parents on the tics/tourettes board that some parents beleive their kids tics started after a vaccination, with Dtap being a big one. I would suggest you also consult a DAN doctor (doctor of autism), they are well versed on vaccine reaction.

 

laurensmom, as long as you are mentioning media attention, I would respectfully ask that you mention or question vaccines as well in some of your interviews, as that is also a great concern to alot of parents on this board and elsewhere. gardicil is a vaccine not to be taken lighty, and I can't believe it was mandatory in your area?

 

Since some, like Ellen (above), have PANDAS symptoms because of strep and THEN subsequently get worse when vaccine is added to the mix, it may possibly also go the other way, ... vaccines causing the first problem, and then later on exacerbated by strep, if that should that ever come into play.

 

good luck

Faith

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Lauren also received two inoculations/vaccinations in the last 6 months. Guardisil & her T-dap which is required by our school district prior to entering 6th grade. Until last year, Lauren was healthy, reached every developmental milestone, and is a bright, young lady.

 

laurensmom,

some of us were wondering if your daughter had vaccinations recently. since your daughter didn't have any other problems or behaviors that are considered symptoms of PANDAS, it is very possible that the vaccinations have brought this on. especially if you have had two in a close period of time, or worse, at the same time. if she had any flu shot on top of that, even more suspect. That said, it doesn't mean this tic is permanent, it is vry possibel that after a few weeks or months, it will calm down. she may very well have had a reaction to the vaccines and this has been reported by parents on the tics/tourettes board that some parents beleive their kids tics started after a vaccination, with Dtap being a big one. I would suggest you also consult a DAN doctor (doctor of autism), they are well versed on vaccine reaction.

 

laurensmom, as long as you are mentioning media attention, I would respectfully ask that you mention or question vaccines as well in some of your interviews, as that is also a great concern to alot of parents on this board and elsewhere. gardicil is a vaccine not to be taken lighty, and I can't believe it was mandatory in your area?

 

Since some, like Ellen (above), have PANDAS symptoms because of strep and THEN subsequently get worse when vaccine is added to the mix, it may possibly also go the other way, ... vaccines causing the first problem, and then later on exacerbated by strep, if that should that ever come into play.

 

good luck

Faith

 

 

Faith you are so right. I can say that is what happened to us. My son had his vaccines right before last sept for 6th grade then started having mild symptoms and then got strep and then the huge explosion. There are so many paths to and from PANDAS it is overwhelming.Kathy

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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