September 23, 2011

A New Chapter...  Finding our way to a PANS / PANDAS Diagnosis
A Grandmother is oftentimes one of the greatest cooks we know.

It's from her years of experience applying the many trade secrets she's learned along
the way that earns her the title.

From her Church group, she learned that sour cream added to brownies imparts an
unparalleled moist and rich texture,  

From her mother's mother, she was taught that fresh, all natural, hand-churned butter
cannot be used too liberally,

And by
combining tips from a myriad of recipes, she could transform an otherwise
ordinary Thursday in November into a feast day filled with heavenly aromas and
glazed temptations sure to break even the strictest dieter's willpower.

As we try to recover our children with autism, apraxia, ADHD or other health issues,
we often must approach it the same way Grandma approached cooking --  steadfastly
collecting knowledge from as many sources as possible.  And then, perhaps most
importantly -- we need to sift through what we find, determine if it applies to our
situation and ultimately figure out how to use it to make our child's world a better

This past week, I've pulled from many sources to arrive at a new chapter in our
journey to recovery... thankfully, it's one that promises giant strides toward healing
Caroline's remaining issues.

Gathering all the Knowledge

From a local TACA Group Meeting
I knew that a child seemingly "catching" OCD is something to be on alert for in the
autism community.  It's a warning sign that they might have an autoimmune disorder
called PANDAS and a low estimate is that 25% of children with ASD have it.

From Caroline's ASD Doctor
Last summer, I learned that when we treated Caroline for gut dysbyosis with
antibiotics, her OCD vanished.  Because of that, even though her ASO(strep)-titers
were normal, PANDAS. was on our radar.

From observing & taking notes
Reviewing my daily notes, even the tiny ones scribbled in the margins of my well worn
notebook (one that would make Grandma proud), it became obvious that it was
during a cold she had in mid-August that Caroline's OCD rapidly intensified.  With the
cold, she had a slight fever and was extremely irritable.  After the cold was gone, the
OCD and irritability remained.  

If physical objects weren't exactly where she wanted them, she compulsively moved
them back and also began tapping things in a very obsessive, specific way.  If her
intent was interfered with or things were out of order, she began screaming and was
clearly completely unable to get past it.  

She also started picking at her thumbnail cuticles so fervently that her nails have
grown deformed.  She became unusually clingy to me.  Not even allowing her Dad to
read her books at bedtime.  She started saying she needed to use the potty even
when she had just gone and her handwriting deteriorated to a preschool level.

From a friend   (thank you Jen R!)
After a month of these behaviors not improving, I could no longer ignore it.  A friend
of mine mentioned that she was considering a PANDAS diagnosis for her daughter.  
As we talked about the symptoms, I became motivated to truly consider it for Caroline.

From the internet... a tool Grandma somehow managed without
To determine what level of panic I should be at, I researched Pediatric Autoimmune
Neuropsychiatric Disorders Associated with Streptococcal Infection... it's no wonder
people shorten it to PANDAS.

Children with PANDAS often experience one or more of the following symptoms
.in conjunction with a rapid onset of Obsessions, Compulsions and/or Tics:

  • ADHD symptoms (hyperactivity, inattention, fidgety)
  • Separation anxiety (Child is “clingy” and has difficulty separating from his/her
  • Sydenham’s Chorea and/or Choreiform (involuntary) movements
  • Mood changes (irritability, sadness, emotional liability)
  • Sleep disturbance (insomnia), separation anxiety at bedtime
  • Urinary urgency or frequency/enuresis
  • Marked deterioration in handwriting and/or math skills
  • Tactile/Sensory Defensiveness
  • Age Regressive Behaviors

Since Caroline has not just one, but EVERY one of the symptoms, I was compelled to
read on (see column at right for a further description of the disorder).  I appropriately
adjusted my panic level to "high" and began searching for help.

From the AutismOne conference
I read through the list of PANDAS presenters at the conference this past May.  The
blurbs about what they presented taught me more and I decided to email Dr.Trifiletti
to ask what our next step should be.

I described Caroline's symptoms and he emailed me back the next morning (on a
Saturday) verifying that yes, it did indeed sound like a PANDAS disorder.  He asked
me to fax her recent labs and offered me a phone appointment on Sunday morning at
8am.  My panic rose slightly again -- what if his shockingly immediate response on a
weekend reflected the gravity of our problem?  

From Specialists
What we know about Caroline's immune system was confirmed again.  Because of her
autoimmune problems (either caused by earlier vaccines or genetic), the vaccines
she received at 6 months of age, caused her body to make inappropriate antibodies
which attacked her brain, likely causing inflammation and injuring the basal ganglia
nuclei in the center of her brain.

The basal ganglia contain neurons that receive and modify information from the
cerebral cortex. They're associated with a variety of functions, including voluntary
motor control, procedural learning, behaviors, and cognitive and emotional functions.

When her basal ganglia were injured after the 6 month vaccines, she developed a
movement disorder (she shakes uncontrollably anytime her sensory system is
overstimulated).  Then, when she received her 12 month vaccines (after the
pediatrician assured us there could be no relation), her brain was again injured,
resulting in her losing all her language and developing significant behavioral,
emotional and sensory issues.

Her doctor sent an order for
Lab Tests to guide us as we move forward with
treatment.  In the meantime (not long term), he asked us to try Ibuprofen to reduce
the inflammation in her brain.  He said that surprisingly, in many kids it works better
than ADHD drugs.... because, you see, Caroline's case is NOT rare, not even
uncommon.  Vaccine induced encephalopathy (brain swelling) is the unpublicized
cause of many childhood neurological disorders.

Not fully convinced that the bottle of ibuprofen, sitting innocently on the shelf in our
bathroom could bring about much of a change, I tried it anyway.

OMG.... it made her dramatically more calm, focused and brought her back much
closer to where she was behaviorally and cognitively in the beginning of August
(before the recent setback from the virus).

From a Homeopath
Continuing to put together the pieces, I thought about how this past summer, Caroline
repeatedly responded well to the homeopathic remedy Belladonna.  Since our
homeopath doesn't like questions... which I suspect is to add to the mystery of
homeopathy, I didn't know why it worked, I just knew it worked and was grateful.  

But now, of course, the reason became unbelievably clear.  The most fundamental
use of Belladonna is as a fever reducer.  Lightbulb moment.  Need I say more?  

It's all about the inflammation.  For the record, in the past, we tried natural anti-
inflammatory supplements as well: Enhansa (cucurmin), ginger, boswellia, bromelain
enzyme, but none of them compared to ibuprofen or belladonna.

Putting it all together

There's so much more I could say... both about PANDAS and unravelling the mystery
of Caroline.  We've only just begun to gather the ingredients.  We have so much
more to learn and evaluate, especially the probable need for IVIG or Plasma
exchange treatments.  But that's all for a different day, since I suspect I already lost
quite a few readers somewhere around the "Her Doctors" paragraph.

So, to those of you who stuck it out... I'm sure you're also able to draw the parallels....

Admittedly even harder than creating the perfect Thanksgiving feast, recovering a
child generally requires applying knowledge pieced together from many sources.

Often times no single doctor will connect all the dots for us.  It's our job as parents to
take everything we know and figure out what we need to question -- as well as who
we need to ask.  

If our turkey is dry, we need to ask for pointers from people who've successfully made
succulent turkeys.  And if we serve canned cranberry sauce, quite frankly, we need to
take a page from Grandma's book on being passionate about our craft.  This
undertaking requires an immense amount of dedication and perseverance... and - to
put it bluntly - simply picking up a can of cranberry sauce isn't gonna cut it if you want
your child back.

So attend the group meetings & conferences, read books, join online groups and ask
your friends... and if you need one, I'm here, ask me.  And I don't serve canned
cranberries (Grandma won't allow it).
For Further Information on PANDAS:

  • There's an excellent Facebook Group
To join it, first, "like" the PANDAS/PITAND/ PANS
page and then ask to join the group         
(mention that Rebecca Ferguson sent you)

Caught OCD" is a recommended Book

What is PANDAS?

PANDAS - Pediatric Autoimmune
Neuropsychiatric Disorder Associated with
Streptococcal infections.
PITAND - Pediatric Infection Triggered
Autoimmune Neuropsychiatric Disorders.

In these auto-immune conditions, a gene is
activated following an infection (usually Group A
beta-hemolytic Streptococcus or GABHS),
causing the immune system to respond

Antibodies attack the brain, causing Encephalitis
(inflammation of the brain), in the basal ganglia
region and cause a rapid onset of symptoms
(see list at left).  

Once the autoimmune process is initiated, the
gene must be turned off to resolve the condition
and presenting symptoms.  

If caught very early in the process, antibiotics
may be sufficient and steroids/NSAIDS have
been used in some patients with some success
to decrease brain inflammation.  

In other cases, treatments such as plasma
exchange or
Intravenous Immune Globulin (IVIG)
therapy may be used to achieve remission.  
Grandma's baking (like so much in life) has reached
perfection through many years of trial and error... we
can learn a lot about how perseverance leads to
success from our Grandmothers.
Is it only a reaction to Strep?

Many parents have found their children's
immune systems are so heightened that they
react even to viruses or other bacteria.  

Especially for these cases, IVIG or PEX
(plasma-exchange) is helpful in reducing the
autoimmune reaction.
Congratulations to my Mother & Grandmother on their
Prize Winning Cranberry Fest Recipes!    9/24/11
Update 9/29/11:
Her labs are back and indeed, according to
her doctor, her immune profile matches what
he sees in children with PANDAS.  She does
not currently show elevated titers to strep...
but again, that does not mean she doesn't
have PANDAS or PANS.  
Her most recent flare was likely virally

She has very low IGG levels.

We're beginning with antibiotics and she
appears to be a good candidate for IVIG.  

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