PANDAS MOMS

[PANDAS_Denmark]

Hi Michele -

 

I have seen only few recommendations to run blood work after negative cultures, but I have seen some. These recommendations are based on the fact, that 1) the strep quick test can give a false result - and 2) strep infections can be others than strep sore throat (impetigo among others - and VERY common among children), and as such not neccesarily can be detected with a strep quick test or strep culture.

I have shown these - few recommendations - to the doctors, and have been very insisting; as they started and for a long time kept telling me, that if he was on antibiotics and the strep culture was negative, he had no strep infection. But he did :-(.

I guess, that what help me in the process of convincing the doctors to run blood work - except of being very insistant and handing out the above mentioned recommendations - is the fact, that my son suffers from vasculitis too and that as a result of that gets petechias every time he has an strepinfection.

I agree with you, that it is quite alarming that kids can have strep while on long term antibiotics !!!!

 

Sincerely -

PANDAS_Mom

 

 

I was just wondering if your son tests negative to the throat culture do they still run blood work after each culture that is negative? I had never thought of doing this. I am sorry that the antibiotics aren't working for your son. Are there any specialist to consult with on the IVIG or steroid treatment? I think in your case it would be in your best interest to get a hold of NIMH and see if they can give you a DR. referral in Denmark who studies infectious disease with a concentration on autoimmune disorders. At least you have found Dr's who are working with you to this point. Maybe they will even have a referral for you of a specialist. How has your son been acting since the strep?

 

This is quite alarming that you and Deedee both have kids who are getting strep while on long term antibiotics!

Michele

Hi -

 

Just wanted to add that my son (now 7 years old, diagnosed with PANDAS a year ago) has been on antibiotic for a year. As with reumatic fever it is assumed, that he will have to be on antibiotic untill he´s about 18 or 21.

 

My son has been on Penicillin V, Amoxicillin and latest on Zithromax/Azithromycin -- and has had strepinfections with them all. That is : The strep throat tests hasn´t been positive, but it has been possible to see that and when he has had strepinfections in the blodtests.

 

As such it seems that no antibiotics is completely safe ... :-(´

 

I have talked to several doctors about this. They admit, that the blodtests tell, he has had strepinfections. However they keep telling themselves and me, that it shouldn´t be possible.

That leaves us with three still ongoig questions and discussions with the doctors :

 

1) Knowing that my son keeps getting strepinfections while on Penicillin V, Amoxicillin and latest on Zithromax/Azithromycin : Is there another and better antibiotic, that should be tried ?

2) Knowing that my son keeps getting strepinfections while on antibiotics : Should he be hometeached, trying to minimize the risk to get infected ?

3) Knowing that my son keeps getting strepinfections while on antibiotics, and knowing how this affects him every time with (several months with tics and massive OCD) : Should one try to minimize the damage the infection can do/does, by giving him IVIGtreatments and/or stereoidtreatments ?

[Ronnas]

In our situation our plan right now is to continue to give my son antibiotics through his teenage years. I feel personally that the teenage years are very hard and if we can prevent flare-ups etc all the better for our son. He has done remarkably well on azithromycin and has been mostly tic free for almost 2 years, and I would really say that our greatest difficulties lie with dealing with his learning disabilities. Below is a excerpt form an article in Prevention magazine...

 

Antibiotics for OCD?

 

Susan E. Swedo, MD, a senior investigator at the National Institute of Mental Health in Bethesda, MD, has long suspected that some cases of OCD--which affects 1 million children and 2.2 million adults--might be triggered by an infection. She's been tracking the effect of strep on children since the mid-1980s, when she worked in the NIMH lab of child psychiatrist Judy Rapoport, MD.

 

Swedo and Rapoport first began to focus on strep after poring over medical literature, some of it stretching back to the 1800s. They found old case reports of an obsessive-compulsive-like malady that struck, they realized, just before children developed Sydenham's chorea, otherwise known as Saint Vitus' dance, a disease with symptoms of uncontrolled movements of the hands and feet. "The kids writhe and jump and jerk and grimace and blink," Swedo says.

 

Sydenham's chorea intrigued Swedo and Rapoport because it's thought to be caused by strep--and is now rare in the United States, thanks to antibiotics. What's more, the odd behavior has been linked to inflammation of the basal ganglia, the same region of the brain where OCD is thought to originate. If severe strep caused chorea, could a low-grade or smoldering strep infection be responsible for OCD?

 

Swedo, who now runs her own research lab at NIMH, interviewed and tested hundreds of children whose medical histories showed the sudden onset of obsessive symptoms after strep infection. "They told us, 'I had these horrible worries for a couple of weeks, and then I started not being able to control my arms and legs,'" she recalls. "Nobody had ever put that together before, but it all fell into place.

 

"What struck us about these kids," says Swedo, "is that they don't just have tics. They have abrupt personality changes; parents talk about these children being possessed. They go from being model third graders, the teacher's pet, to the worst kid in the class." Many of the children also developed Tourette's syndrome, ADHD, or separation anxiety.

 

In a 1998 American Journal of Psychiatry article that stirred up a lot of controversy, Swedo's team claimed that the syndrome was distinct from other childhood mental illnesses and dubbed it PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Studies since then have tended to support Swedo's thesis. Last year, researchers at the universities of Chicago and Washington found that strep infection appeared to double a child's risk of developing OCD, Tourette's, or tic disorder within 3 months; multiple infections within a year tripled the risk.

 

The culprit, Swedo and other researchers suspect, isn't strep itself but the immune reaction some children have to it: Strep antibodies may mistakenly attack the brain instead of the bacteria, a sloppy immune response known as cross-reactivity. The exact process isn't yet understood, Swedo says. But repeated infections seem to increase both the severity and duration of the psychological symptoms--and may cause permanent damage.

 

On the other hand, for most children who fit a PANDAS diagnosis, medication can have a profound effect, Swedo has found. "As soon as that kid's behavior starts to flare up, parents should go to a doctor, have a throat culture done, and get the child treated with antibiotics if there's an infection," she says "These kids often don't exhibit a sore throat from their strep infection; they present with tics or OCD symptoms." A 3-year study conducted at the University of Rochester Medical Center showed that giving antibiotics to 12 children immediately after the sudden onset of OCD eliminated their symptoms within a few weeks, as it did in Luke R.'s case. For youngsters who have a diagnosis of OCD and a history of symptoms that seem to worsen after strep, she suggests that doctors consider prescribing long-term antibiotics to ward off infections through the teenage years. In 2005, Swedo published a study on this technique: 23 PANDAS patients saw their symptoms decline 60 to 90%.

 

No one's certain how many cases of OCD are strep related. Several leading physicians believe none are, because they're unconvinced by the evidence. "It's an interesting hypothesis, but it's unproven," says Stanford Shulman, MD, chief of infectious diseases at Children's Memorial Hospital in Chicago. And putting children on long-term, preventive antibiotics to treat OCD raises the risk of antibiotic resistance--and is misguided, he says. All children with OCD get worse when their bodies are stressed, he and other critics point out--whether that's caused by strep or a cold or a dead pet. Plus, strep is among the most common of all childhood infections. Test any child for the bacteria, whether he has OCD or not, and it's possible he'll show signs of a recent exposure.

 

Other heavy hitters, however, are lining up behind the PANDAS hypothesis. W. Ian Lipkin, MD, director of an infectious disease laboratory at Columbia University's Mailman School of Public Health, says he has corroborated Swedo's research in mice. "It's all very consistent," he says. Lipkin adds that his lab has created a new antibody test that he hopes will identify children at risk of strep-related OCD.

 

For her part, Swedo, who has devoted the last 30 years to solving the PANDAS mystery, is sticking to her guns. "The real take-home message is: Listen to your gut," she says. "One mom was a medical technologist, and the family joke was that any time her older son started to tic, they should take him in for a throat culture, because a few days later he'd be in bed with terrible strep throat. But when she mentioned that to her son's neurologists, they just pooh-poohed her.

 

"The bottom line is, if you prevent strep in a child with PANDAS, you prevent poststrep worsening of OCD and tics," says Swedo. "Most will have remaining symptoms, but they'll be milder and better controlled."