I would like to take the time to
briefly share the history and goals of this project. This project was started three years ago because
families could not get pediatricians and medical specialists to run reasonable
tests that would rule out co morbid conditions of autism. Our goal is to educated physicians, therapist
and parents that children can and do often have co morbid conditions such as
seizure disorders, gastrointestinal disorders, immune deficiencies and mitochondrial
disease. We want physicians and
therapists to see past the autism label and see the whole child. Autism is a neurobiological disease and therefore
we must make sure that there is no medical reason for a behavior before it is
treated as a behavior. So often a behavior
is taking place because of a medical issue and a child unable to communicate
the pain they are in! Secondly, our
belief is that if we have good physicians ruling in or out co occurring disorders
parents will spend less money on DAN doctors.
We support the use of DAN doctors but believe that we must advocate the
use of quality physicians to rule out or treat co occurring medical
conditions. This allows parents to use
insurance, save money, and use their resources more appropriately.
We have had some great successes:
1.
Three years ago it was extremely difficult to
get a 24 hour EEG. Now it is standard
practice to receive minimally a 24 hour EEG.
Physicians and Neurologists now commonly know that these children have a
30 percent chance of having a seizure disorder.
2.
It was very difficult to get a gastroenterologist
to scope a child with autism. Parents were
commonly told that children with autism had diarrhea and constipation and that
was just part of autism. Now we have a
wonderful doctor who will rules out impaction, scope to look for medical disorders
including Eosiliphil conditions and is supportive of the “diet.”
3.
If families wanted to use IVIG they would have
to pay out of pocket to a DAN doctor for treatment or travel to UC Irvine to
try and get it covered. Now more than 40
children with autism and immune deficiency or dysfunction are receiving IVIG
and insurance is covering these costs. We
actually have an immunologist who is diagnosing and treating PANDAS which is
something we thought would never happen. Both these treatments are saving family
thousands of dollars monthly and children are getting medical treatment that
they desperately needed.
4.
We wanted doctors to work together to co treat
our children. Currently, our favorite gastroenterologist
and immunologist are working together to co treat children with eosinophil
conditions.
5.
We brought out Dr. Cohen to do grand rounds at
Phoenix children’s Hospital. This was highly successful. Seven families have pursued a mitochondrial
work up because of their knowledge about this disorder. They also had the information to educate their
primary care physician. PCH is now on
the lookout for mitochondrial disease and one family has actively been referred
for additional tests. Years ago it was
impossible to even get metabolic tests run and now this is commonly happening.
This project cannot be a success
without the help of parents. Finding
quality doctors and educating them is time consuming and we have painstakingly
worked on this for three years. There
are some important rules that need to be followed that will help this project
be a success:
1.
It is important that parents not bring in DAN
labs to our mainstream doctors. They do
not use these labs and cannot read them.
Please only bring in lab tests run from traditional lab companies like
Sonora Quest or Lab Core.
2.
It is important to know the difference between
DAN doctors and main stream physicians.
We cannot expect our mainstream doctors to behave like a DAN
doctor. What is wonderful is we can use
them together. For instance, you can
have your child scoped and find out what is going on and then you have the
choice to use a natural treatment or a mainstream treatment. At least now you actually know what is
happening inside your child. Mark was recently scoped and has esophagitis. We decided to use a mainstream treatment for
3 months to see if it cures the problem.
If it does not work we will pursue a more natural approach as it may be
an ongoing issue. We now have a choice
which is what we have always wanted for our families.
3.
It is important that we are good patients. Please make an effort to come in educated
about what your concerns are and why you want a certain test run. What symptoms is your child having and why
you are concerned. Please do not go into
a doctor saying “little Joey just had this test and I want it to.” Autism Society offers a 30 minute class on
how to be a good patient and get what you want from mainstream doctors. If you are interested in this class please
contact one of the parent mentors.
4.
You need to follow the doctor’s directions. This is crucially important as we are still
trying to educate our doctors. For
instance, if your child is not gaining weight the first thing the doctor is
going to want to make sure is that your child is eating enough to gain
weight. To prove this to the doctor and
have them look further it is important to keep a food diary and return to the
doctor to prove that this is not the problem.
Once you demonstrate this the doctor will look further. As parents we have a responsibility to our
community to make the effort to educate our doctors in a kind and thorough way.
5.
Our doctors are not DAN doctors. They are to be used for co occurring conditions. It is important to be able to have a disorder
diagnosed. Once it is diagnosed it is up
to you to decide how you want to treat it.
I have a thyroid condition. I
first tried a natural treatment but it did not work and now use a mainstream
treatment. For Mark, we are making the
opposite decision. But in both situations
we knew what the issues were and could make the choice.
Finally, I am amazed at how much I am able to get my
mainstream physicians to do for us. When
I get calls from parents who see the same doctors and do not have the same
results I am always surprised. I have
learned these last three years that it is usually because of the following
reasons; lack of preparation for the appointment, the expectation that the
doctor would be a DAN doctor, and/ or the parent does not want to spend the
time to follow directions so that they can educate the doctor and have them
take the next step. Please remember this
is a journey and we need everyone to help us move the project along. Recently a Cleveland Clinic physician told us
that the care our children are receiving in Phoenix is the best in the country.
We currently have parents in New York
and Kansas asking us to help them start this project in their states. We are proud of this project and want it to
continue to move forward and we cannot do that without our families. If you have questions or concerns about this
project please contact one of the parent mentors.
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