TODAY   |  March 11, 2010

Treatment helps girl who kept sneezing

Doctors say a little-understood autoimmune disorder called PANDAS is the reason 12-year-old Lauren Johnson sneezed up to 12,000 times a day for months. Dr. Nancy Snyderman checks back in with Lauren, her family and her doctor to learn about her much-improved condition.

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This content comes from Closed Captioning that was broadcast along with this program.

>>> natalie?

>> al, thank you. this morning on "today's update," imagine if you started to sneeze and simply couldn't stop. well, that's exactly what happened to 12-year-old lauren johnson . she was sneezing up to 12 times a minute. in november, lauren shared her medical mystery with us and she's back with an update. we're going to hear from her in just a moment, but first, nbc's chief medical editor dr. nancy snyderman has her story.

>> reporter: it all began with a common cold at the end of october. [ sneezing ] lauren johnson was sneezing constantly.

>> it's been two weeks now, and this hasn't stopped.

>> reporter: it was happening all day every day, up to 12,000 times a day. the 12-year-old girl only stopped when she was able to sleep.

>> nobody really knows how to treat it, what's going to work.

>> reporter: her family consulted all kinds of physicians. they tried everything from therapy to hypnosis to allergy testing . the johnsons shared their story here on "today."

>> it became a rith mattic, nonstop, chronic sneeze. that's really when we became alarmed, a few weeks ago.

>> reporter: after her appearance, people from around the world contacted the johnsons, hoping to help.

>> spasms of coughing.

>> reporter: including top child development experts who treat disorders like tourette's syndrome and other neurological diseases.

>> i had an eeg, mri, ct, went to the ear, nose and throat doctor.

>> reporter: after an exhausting and sometimes confusing six weeks, they came back on "today" in december to share with us the diagnosis. pandis.

>> well, pandis is an acronym. it's a bunch of letters that stand for a bigger thing, pediatric autoimmune disorders associated with streptococcus. in this condition, what typically happens is following a strep infection, a child will develop a sudden onset of either ticks or ocd-type behavior.

>> reporter: because pandas is a newly recognized disease, treatment can be controversial, but lauren johnson and her family are finally on their way to having some answers. and dr. nancy snyderman is here along with lauren johnson , her mom, lynn , and her doctor, dennis. good morning to all of you.

>> good morning.

>> and notice the silence. lauren , you're not sneezing anymore. that is great news!

>> thank you.

>> how long ago did this stop?

>> about two weeks ago.

>> how are you feeling now?

>> a lot better.

>> a lot better. lynn , two weeks ago, just, just stopped?

>> well, it gradually stopped, but over a two-day period, but yeah, she stopped.

>> and it stopped at the treatment dr. bobulis.

>> yes.

>> we mentioned she was diagnosed with pandas.

>> yes.

>> first of all, explain how this sort of kicked the sneezing -- how all of that started happening?

>> what we did was treated her with intravenous immuneglobulin.

>> ivig .

>> ivig it's commonly called. what you do is you infuse antibodies which serve to complex with the auto antibodies being generated by the immune system that go into the brain and cause the movement disorder . in lauren 's case, the sneezing tick.

>> now, explain what pandas really is and how it really started this whole tick to begin with.

>> well, pandas is a condition that develops initially after an infection with group a strep.

>> uh huh .

>> and the immune system responds by making antibodies, creating cytokines, immune complexes generated from exotoxins from the strep that cross the blood-brain barrier. the blood-brain barrier is breached and it attacks a certain part of the brain called the basal ganglia.

>> right.

>> and there are shifts in hormones in that part of the brain. dopamine, for example, goes up or down, depending on which receptor is triggered, and that usually results in movement disorder , that results in obsessive- compulsive behavior .

>> right. and nancy, this is a rarely new diagnosis.

>> it's new enough that when i was a pediatric resident, i didn't know anything about it.

>> right.

>> as cases have hit the literature over the last couple years, i've learned a lot. i think the underlying theme you hear here is a bacterial infection that trig yeagers almost a hyper reaction in the body.

>> exactly.

>> and the body sort of turns on itself. when your immune sort of sees itself as foreign, things like ticks, you know, go ahead and click in.

>> yeah. what actually happens is, there's molecular mimicry . there are proteins on the strep.

>> right.

>> that generate an immune response , and these antibodies now mistakenly think that certain brain tissue is actually strep.

>> right. and so, lynn , i mean, the great news is, your daughter now is cured of this.

>> she's not cured.

>> she's not cured?

>> no. like i said, these children -- that's the biggest problem with this disease. you know, parents live in fear because they can be reexposed to a bacteria, including strep, and remanifest again. some children go years, some children go months. some children it never remanifests again. we need to learn more about it. we need more research.

>> so you want the awareness to be out there. that's why it's so important you're back on with us. and doctor, the chance she will have to undergo some reoccurring treatment, is that likely in this case?

>> it's a possibility. we're watching her very closely right now.

>> all right.

>> i think in the meantime, you say, wow, the ivig was a great success.

>> great success.

>> look how great she is. then you have to get back to a new normal.

>> yeah.

>> and reembrace that and say, okay, whatever i had, you assume that's going to be a resolution and you get ready for the fact that there might be needed therapy.

>> and quickly, lauren , how does it feel to not have to worry about that for now and just be back to school and back to your routine?

>> it feels a lot better. i'm not back to school yet, but soon, hopefully.

>> not back to school? okay, well, we wish you all the best. good luck with everything.

>> thank you.

>> we'll continue to follow your story. thank you. and thanks to all of you, as