|One of our major goals for Caroline has been for her to come
up with her own ideas. Treating PANDAS has contributed to
Above, within a few days, Caroline went from merely "zoning
out" at computer games to getting her toys and making up new
games. Here she is playing Kai-lan's Super Apple Surprise.
The amazing part is that she thought -on her own- to get a
"Granny Apples" game from her playroom and collect the same
number of "real" apples in the basket as she did on the
Computer. She was very proud of her idea and of herself!
October 27, 2011
How does your Child's Physician "Measure Up?"
It's can be extremely difficult to find a physician who meets ALL those criteria.
When you find one, you justifiably feel as if you've won the lottery. If you haven't
found one yet, let me explain how we found ours and why she's our MVP.
On our newly-minted journey into the world of PANDAS, I've been reminded of two
important lessons I learned two years ago. The first is for parents who aren't dealing
with autism or are new to the biomedical journey. The second is for all of us
old-timers who sometimes need reminders and motivation!
As a tribute to my 5-day old twitter account, I'll call the first one:
1. FOLLOW AUTISM.
When Caroline was initially diagnosed with sensory processing disorder and verbal
apraxia, I breathed a big sigh of relief that she didn't have "autism." However, as I
explained in "Healing the 4A Disorders," when I researched SPD and Apraxia, I didn't
find much about how to actually recover a child.
Not until I embraced the Autism community did I realize that there was an entire world
of knowledge and services I could've been utilizing. I felt like a small towner who had
been suddenly transplanted in New York City... both thrilled and overwhelmed with
I realized that the same research and biomedical options available to help children
with autism could help children who have some of the same symptoms...
Inattentiveness, language delays, poor motor planning, processing delays, allergies,
hyperactivity and ANY autoimmune disorder (including PANDAS).
Now, two years later, as I read the PANDAS message boards and speak to a
physician who's a specialist in the field, I'm reminded how a majority of the people
and physicians (who aren't technically dealing with Autism) don't realize they should
take advantage of the vast amount of treatment options heavily researched in the
Generally these treatments target the same issues, which, in the case of PANDAS
are Autoimmune disorders, Inflammation, Viruses and Bacteria. Ask most autism
parents and they'll tell you they deal with those on a daily basis.
Let's say you believe me and are ready to get started. That's great...
Welcome to New York City!
What now?! You need to find friends, get a guidebook and put to use everything the
city has to offer. You may already know a specialist who can tell you all about the
Empire State building. But then what? You need someone who's a complete
guidebook. Who can give you the full tour of the Statue of Liberty, Wall Street,
Central Park and so on... instructing you how to have the best experience with each
You need to join groups, message boards and build your network of parents. If you
have a child with an autoimmune disorder and you're not in an online autism group,
you should be! If you need suggestions, email me.
The parents you meet will talk about books they've read, treatments that work and
also their physicians. From that, you'll be able to find one who's the right fit for you.
Someone who fits all the criteria in your "Want Ad." Someone who will be able to
make sense of all that you're being told by different specialists.
Why you need more than a specialist in a single area
Here are just two recent examples of the value of our comprehensive 'autism'
When Caroline's PANDAS specialist prescribed Augmentin, her physician quickly
pointed out that the clavulanic acid in it increases ammonia levels (something many
children with autism have an already high level of and can be dangerous). She
recommended plain Amoxicillin, which was safer for Caroline. The specialist wasn't
even aware of the ammonia issue or that it could be a problem.
Another example occurred when I mentioned, also to the PANDAS specialist, that
Caroline had been on Imunovir and Low Dose Naltrexone (Immune modulators). He
hadn't even heard of Imunovir and wasn't sure if he knew anything about LDN. Both
of these immune modulators should certainly be considered by anyone with PANDAS.
Bottom line, Caroline's 'autism' physician is like the New York City guide book, map
and tour bus all rolled into one. Without her, we would most certainly not be where
we are today. Which brings me to Lesson #2:
2. TREAT THE UNDERLYING CAUSES.
In the field of biomedicine, there's much talk of "treating the root cause" of your
child's issues. Rather than chasing symptoms, if you can determine what's causing
them and treat that, you'll be much more likely to be able to make a permanent
Sometimes, though, we all get sidetracked by treatments that offer only symptom
relief. Again, I can present a PANDAS example -- easy to tell what's on my mind
lately. See the photo & story (to the right) for one of Caroline's great successes
while treating a PANDAS flare.
The problem is, we're using antibiotics to suppress the bacteria causing her
inflammation... which is helpful, for the short term. But what's causing her immune
system to be suppressed allowing PANDAS to occur in the first place?
The answer we've found is heavy metals. Removing them is what's going to get her
immune system permanently back on track. We've been working on it for about a
year, but have another year to go (since we're using a very safe, low-dose, Andy
Cutler chelation protocol).
It's tedious, but it's the only thing that's going to bring true recovery for Caroline.
Lately, I'll admit, I've missed a few rounds of chelation. Why? Because we've been
so busy dealing with PANDAS -- and although that 'detour' was necessary, now we
need to (as they often say in the Recovery from Autism group) "Get back to the business of
Bottom line of lesson #2, if your tour bus stops at Central Park and it's a lovely day,
take your time to enjoy it.... you may see some much needed temporary symptom
relief.... but DO NOT miss the bus to continue on toward the destination of Recovery.
Never take your eye off the underlying causes.
We're fortunate to have a physician who knows the importance of this lesson and
can remind us if we miss the bus, to get ourselves into a taxi and continue on!
If your child's physician doesn't "measure up"
Consider the reasons for finding one who does. If you can't afford one, talk to other
parents, learn the "tricks of the trade" from them. In our case, we're lucky, our local
'autism' physician is deserving of every word of praise she receives. She combines
the best of all worlds, Rx, dietary modifications, supplements, and more.
She scours new research, continually bringing us information on treatments that help
Caroline make giant strides toward recovery. And perhaps most importantly of all,
she reminds us to stay focused on the underlying causes! I couldn't imagine trying
to recover Caroline without her.
If you can't say the same about your child's physician, don't resort to a "Want Ad"
just yet. Talk to other parents, or to me, and learn how to find someone who's going
to make a real difference in your child's future success and health. Someone who
will give you a tour of the whole city -- taking you to landmarks you never knew
existed. A guide who you can't imagine taking on the world without.
Lately, I've come across several people who aren't able to find a physician who
understands how to treat their child. Some of them have no one. Others have a
slew of specialists who treat certain symptoms, but have no one to put everything
together, seek out the underlying causes and ultimately recover their child. Their
search hasn't given them any answers and they're about to resort to a Want Ad...
Newer to the overwhelming world of
Choose a guidebook from the "Getting
Started" page and start taking advantage
of all the biomedical options available that
can help manage symptoms and treat
An Exceptional Doctor: