Thursday, 10 December 2009
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Sneezing Girl Gets PANDAS Diagnosis, What Do You Think?
There has been a decent amount of news coverage on one 12-year-old girl recently. She has made headlines because of a seemingly out of nowhere and uncontrollable sneezing problem. Lauren Johnson, from Virginia, started sneezing up to 12,000 times a day after she had a cold back in November and her family and doctors had been baffled up until now.
When my boyfriend and I first heard of Lauren’s condition on NBC’s Today Show a few weeks ago we instantly began trying to diagnose her ourselves. At that time her mother thought that Lauren had some unknown condition and was naturally worried about her child.
Again, my boyfriend and I started discussing what we thought could be wrong with poor Lauren. While being interviewed Lauren “sneezed” uncontrollably and almost nonstop. The thing that struck both my boyfriend and I was that Lauren’s sneezes did not sound or even look like normal sneezes.
Now, I know people sneeze in all kinds of ways, there are quiet sneezers and loud sneezers and everything in between but what Lauren was doing appeared to be more of a tick than an actual sneeze. By the end of our discussion we had concluded that Lauren seemed to be suffering from Turrets Syndrome but as we are definitely not medical experts we were just speculating.
Doctors have now concluded that Lauren’s “sneezing” problem is due to something called PANDAS an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. According to the National Institute of Mental Health, “The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep infections such as "Strep throat" and Scarlet Fever.”
I still wonder if this is what Lauren is suffering from considering she supposedly only had a cold.
Have any of you been following Lauren’s story? If so what is your take on the whole thing? Also, have any of you had any experience with PANDAS?
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- From: michcoy@xanga
- Name: Michelle
- About Me: I am a full-time nanny who loves to write whenever I can. I also love being outdoors whenever possible. Camping, hiking and kayaking are a few of my favorite activities.
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Comments (38)
They didn't seem like sneezes so I figured it had to be a tic, as well.
I also didn't think it sounded like a sneeze and having a friend of the family with tourettes it reminded me of one of the involuntary sounds that he makes. I felt like it was at least partially mental in nature since they said she does not "sneeze" in her sleep. I know it has to be a disruption in her life though and I hope that they can find a way to help her deal with it.
Sounds about right. This is what most people assumed she had, some kind of OCD/tourettes. Didn't need to be a medical professional to realize those were not actual sneezes. Her eyes would stay wide open during some of her "sneezes" too, which is physically impossible.
I don't follow the story. I have never had any experience with PANDAS, but if her sneezing is more like a tick than actual sneezing PANDAS does seem like a fitting diagnosis.
They didn't appear to be actual sneezes - I suspected a tic. That story pissed me off royally, because the mom was saying, "Oh, we see like twelve doctors a day,", when I woke up and couldn't walk and no one gave a damn. Ha. She's not SNEEZING - it's literally impossible to sneeze in that manner. She was calm and quiet and her face barely moved; sneezes reach 100-200 mph, no way to do that calmly and quietly what, 9 times an hour?
Also, if it were a physical problem, she would sneeze while sleeping, no questions asked.
I get irritated when stories like this hit the news. Sure, it sucks for her, but seriously? Probably pisses me off more because I have an undiagnosed condition too, only it's physical, seriously painful, and no media outlet gives a damn because I'm not a cute little kid or a Dallas Cowboy cheerleader. Ugh.
You say she just had a cold and her parents say she had a cold... but she most definitely could have had some form of streptococcal infection running around that was never diagnosed. You can get over an infection from strep without antibiotics.
It definitely seems like PANDAS to me.
I get strep alot myself and have a lot of medical conditions that have been undiagnosed. I sometimes wonder if the realm of this "disease" couldn't be seen in adults as well.
I didn't follow the story either, but yeah...it sounds like a fitting diagnosis considering the symptoms. Strep can present like a simple cold; it did in our 7 year old. They tested him for strep "just in case" but "didn't think he had it or he'd be in a lot more discomfort". Had he not rubbed his eye in PE and caused the school nurse to fly, falsly, into a frenzy of "OMG! PINK EYE!!", which requires a doctor's note for him to return to school, we never would have even known he had strep in the first place.
@whitetrashpoet@xanga - Amen!
@whitetrashpoet@xanga - Heck yeah, man. Plenty of people suffer as much if not more than this girl, so it's kind of frustrating that news networks put her on a pedestal like that. I guess the more unusual your suffering manifests itself, the more "news-worthy" it is. Plus, it definitely helps to be a cute little girl.... *sigh*
My cousin *thinks* she has the same thing, this is probably where she got the idea. She's 16 and acts like she's about 6 because her mom treats her like she's 6. Her mom is the only one that believes her. She does this gasping thing when she's not preoccupied... IT'S SO ANNOYING!
Anyway, I think the girl's sneezes sound weird because she's probably exhausted from sneezing, a lot of muscles contract while you sneeze...
I haven't been following the story but I am VERY glad to see PANDAS getting some widespread recognition. It is not always some easy little tic issue that only shows up after a little infection and not all strep infections are easy to get rid of. My friend's daughter was misdiagnosed for years before they put together that all of her symptoms were PANDAS. It was a very frustrating time as their daughter has sleep issues, rages, OCD and a whole host of other issues when her PANDAS is not controlled with antibiotics. Even now they have a battery of specialists trying to help their daughter.
I'm sorry some of you feel that you are not getting the attention your conditions deserve but that doesn't mean other conditions should not get attention too.
Watching her is making my nose hurt.
The quoted definition that you included has the word "Tourette's" in it while you spell it "Turrets" a few lines above. Unless you are referring to a syndrome that is based in gun turrets or something...
C'mon proofreaders/editors!
And developing nervous tics after a strep infection is an interesting case. Hm.
I have never heard of PANDAS. I just hope the poor girl gets some relief from her sneezing fits.
@bubbelcat - how has PANDAS affected your friends daughter - does she have things like the sneezing fits too? How did they finally figure it out? Does she still have issues with strep?
I haven't heard of this condition here before. I know strep throat can cause a bit of continuous sneezing but not to this extent.
I was following it for a while cause she actually lives in the same area as me.
@der_lila_Stern@xanga - I'm not clear on all of the early details since I've only known her for about the last year of their journey. She doesn't have a "sneezing" tic, her symptoms are more similar to ASD and ADHD both of which she was dxed with incorrectly before her PANDAS dx. When her dd is not on antibiotics and steroids (prednisone) she is easily overwhelmed by things like crowds and doctor appointments and she can fall into uncontrollable rages and screaming fits that can last for hours. She also suffered from extreme anxiety, at 7 she literally was terrified to be away from her mother. I think when all of the ASD treatment was showing no effects they switched to a dr. who speculated PANDAS and when that treatment worked that is how she was dxed.
She does have constant recurrences of strep, as does her mother, which indicates maybe it is genetic? I'm not sure why they just can't knock the strep out for good. It seems like she is on prednisone and zithromycin almost constantly. Maybe that's the best they can do for now? I'm not really sure. It's a terrible thing to go through though. My son had a horrible strep infection in his skin over the summer and I'm constantly worried that this will become a recurrent issue. A little knowledge.....
@whitetrashpoet@xanga - I assume you've been checked for fibromyalgia, MS and Lupus? They are insanely hard to dx but seem the most likely fit with your symptoms. When you say "no one cared" do you mean your doctors? Definitely some drs are far better than others and most of the time you just need to take charge of your own care and be your own advocate.
@bubbelcat - I just dont understand. Why would any doctor just put a child on antibiotics. It also doesnt make any sense to me how using zithromycin almost constantly would do anything. If she is having problems not getting rid of strep, then using the same antibiotic over and over wouldnt make a difference. In fact, it would just allow the bacteria to build resistance - and all of her symptoms would come back, if the medicine were truly helping solve a problem.
I still dont understand how the diagnosis fits your friends daughter. You mention OCD, but you also said that it solved rages and sleep issues. I dont understand how they are connected to PANDAS.
@der_lila_Stern@xanga - She didn't start off on zithro, that's just what she is on now. She has been through a few antibiotics and antibiotic resistance IS a problem which is probably why the strep reoccurs. But since I'm not a doctor, nor am I the child's mother, I can't say that for sure.
My only direct experience with strep was with my son's infection this past year and we had to go through 2 different antibiotic treatments to kick it and my kids are NEVER on antibiotics. In fact I think that was only my son's 4th time with antiobiotics in 10 years and the first time since he was 3 years old.
I don't understand exactly how they came to a PANDAS dx either. Most of our conversations about her condition are about its effects not the onset and dx. I only have a brief history of that. I would guess that like many diseases it was dxed based on what type of treatment was effective but again I'm not a doctor. They are the ones that have been through YEARS and YEARS of frustrating doctor appointments, switching meds., incorrect diagnoses, etc. I'm obviously not privy to every intimate detail of their journey and I'm not exactly going to challenge her and her doctors who have FAR more knowledge and experience in this that I do.
@der_lila_Stern@xanga - From http://intramural.nimh.nih.gov/pdn/web.htm "The children usually have dramatic, "overnight"
onset of symptoms, including motor or vocal tics, obsessions, and/or
compulsions. In addition to these symptoms, children may also become
moody, irritable or show concerns about separating from parents or
loved ones. This abrupt onset is generally preceeded by a Strep. throat
infection"
I was considering giving you my friend's personal contact info. so you could get more specific info. from her, or at least giving you a link to her books on Amazon, but after wisely following my instinct that your interest was not at all ingenuous and seeing who your "friends" are I think I'll pass. I'm sorry to discover you're actually trolling rather than being a mature adult with a sincere interest in this terrible disease.
@bubbelcat - well, you see, here is the funny part about that. If you actually knew anyone who had such a disease, you would be able to share information. And even if things didnt make sense at first, you would be able to explain them so that they did make sense. You also wouldnt have given misinformation from the beginning. If you had read the site you linked farther, you would have found these 2 questions and answers
Q. What are the treatment options for children with PANDAS?
A. The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child.
Children with strep. triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child’s primary physician can help you decide which type of specialist your child may need to see to receive these treatments.
Q. Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?
A. Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn’t enough evidence to recommend the long-term use of antibiotics.
So you see, no doctor in his right mind would constantly give antibiotics. It would make it near impossible the infection to be fought off - because of resistance. And that would be true not only in the person who had the infection, but then also anyone they passed the infection to. (Which is why even someone who hasnt been on antibiotics in a long time, or hardly at all in their life, can need more than 1 different antibiotic to treat an infection.)
And if PANDAS were a problem for this child, the treatments would be for the symptoms, not focusing on the strep.
So in the future, unless you actually know someone who has such a disease. PANDAS is not something I had ever heard of, so if you had been able to offer non contradictory information about this case that you "know" all would have been well. Instead, you have shown yourself to be seeking attention, yet again.
@der_lila_Stern@xanga - Who knew you're only allowed to have an interest if you have or do not have certain people on your friends list!
I will say thing abstractly, since I know it only be taken poorly because it is "me" saying it, but people shouldn't be afraid to challenge their doctors (and/or seek a second, third, fourth, etc. opinion) if it feels like their diagnosis isn't accurate or the treatment isn't working. Having suffered through gallstones for nearly a decade because all of [multiple] doctors that either didn't think to check into it further or were too busy to be bothered with it, I can vouch for the fact that they don't always catch things that they should.
@der_lila_Stern@xanga - I did read the site. I never said that was her entire medical or treatment history. I answered the questions you ingenuously asked. Shrug. Either way the facts are I do know someone whose daughter has PANDAS and you are a troll, in every sense of the word. But I don't have to justify or prove a thing to you. I started off trying to be nice and I relayed things as I know them from her. I never said I'd been to every appointment and had every intimate detail. I did say many times I'm not a doctor. I'm sorry that you and your small minded cliquey friends clearly don't ever communicate with people outside of your little circles or otherwise you'd meet more people and know people with a wide range of experiences. But being small minded as you are I can see how you couldn't possibly imagine a world where you are friendly and get to know lots of people with many and varied experiences. If this is the best you can do then I feel very, very, very sorry for you. It is a truly pathetic loser that would use a disease to TRY to get something over on a total stranger for absolutely NO gain at all. LMAO!
@bubbelcat - WOW! From you, I take that as a complement. I also appreciate the good laugh. No day should pass where someone doesnt have at least one good laugh. You have provided that for me today.