Tuesday, October 23, 2007

Strep Throat is Different For My Kids

Over the years, I've come to rely on the fact that my son responds differently to germs. My son has tested positive a couple of times for strep, but he only had one symptom, a minor sore throat with minor redness. No fever, no aches, energy normal. My pediatrician thinks differently, but whatever, and I move on.

Years ago I had read about a new emerging disorder called PANDAS in a couple of the autism books, but never paid too much attention to them because my son never presented with tics. Nor did he seem to ever get strep throat. Boy was I wrong. Thanks to our nutritionist, I have revisited this disorder, called PANDAS. I believe both my children have this - their presentation doesn't fit to a tee, but it's the closet explanation yet to what is happening to my children.

In a nutshell, a strep infection attacks the central nervous system, causing OCD and tics among other things. The majority of children today are believed to have strep in their system during an outbreak, but are symptom-free. Until recently, this was the case for my kids, although my daughter has had occasional blinking episodes for the last couple of years. I've always chalked this up to seasonal allergies.

Strep has broken out in their school this fall, many kids have been absent. At the same time, my son and daughter both got tics. In addition, my daughter got very emotional and clingy. True, we could attach this to numerous other reasons, but it totally matches with the timing.

Below are numerous links. I highly recommend any parent with a child with an ASD or ADD/ADHD to review this information, in the interest of making informed health care choices. This has been going on for over 10 years.

Here's a general discription taken from an NIH website:

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. 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.

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.

What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.

In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.

If you are looking for traditional information, information your doctor has,the publication Pediatrics has a position on P.A.N.D.A.S. The cause (strep) and effect(tics, OCD behaviors) cannot fit into the scientific method just yet, so they are calling it an unproven hypothesis. I have to say it does sound very challenging. They do not recommend antibiotics for treatment.

This NY Times article talks primarily about OCD and the strep connection.

Here's an NIH website that describes this disorder.

The medical foundation, CIDPUSA is also a good reference.


Laura said...

Uggh! I am still at the point where I want to ignore PANDAS and pretend it doesn't exist. Lalalala! I can't see you! You don't exist! The work never stops, does it? Sigh. The things we have to learn about that we never wanted to know. PANDAS and Lyme Disease are two that come up frequently on the various Autism lists, but I don't want to go there until I have to! Read this in Dubya voice: The immune system is tricky! Really tricky!

Hutton doesn't have PANDAS, as far as I know, but man, does he obsess on things -- "What time is it?" and outlets, plugs and cords are the latest.

AshleyLeo said...

I was the same way. Who wants to know about this crap? Ignore ignore. No OCD, one per family (me) ha ha. Leo was big time into the clock. And attics. Enter the home of somebody new, "Can I see your attic?".

The good news, at least with us, is that we have protocol mostly containing herbs, enzymes, and immune boosters that nixed it. But now we are out, so they came back. Like you said, the work never stops.

Laura said...

Oh man! The attics reminded me - while trick or treating, Hutton commented on people's ceiling fans before saying, "Trick or Treat!" I had to keep reminding him not to walk into someone's house if not invited, and to ignore the ceiling fans. Yeah, might as well have said, "Just ignore the elephant in the room."

AshleyLeo said...

Ceiling fans? Another thing in common. That's passe in our house - that was the toddler years. Attics are where it's at! ha ha

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AshleyLeo said...

I really hate these drug company spammers! I finally figured out how to delete their advertising from the comments. Ugh!

warriormom said...

Laura...DO NOT IGNORE IT!!!!! I almost did and almost lost my child forever. I tried abx for a year to no avial. Doc Bock says if not treated it is essentially cookign their brains! When it becomes systemic, it will attack the heart leading to heart failure. If your child exhibits OCD, have him tested!!!!! ASO, Anne Connolly, AntiDnase, and Streptozyme and treat fast. Ours turned chronic (anne connolly) which translates to autoimmune brain inflammation. My son was very very sick but no one knew-it just presented itself in OCD and anger. With IVIG and abx, we are so close to recovery. Had I not ignored it, and faced it head on (I didn't want to!), my child would be trapped in a body that was hell. Please, please, please, just TEST him!

Our journey...