The reason for this email is to start researching the behavioral
issues we experience with our Cystinotic children.
I have spent the last 8-9 years
struggling to understand and diagnose the emotional/behavioral problems we have
been experiencing with our son. After a lot of research on my behalf, reading
books, spending hours on the internet, I would end up diagnosing him myself and
have the psychologist or psychiatrist agree with it, (after it was suggested).
eg, Aspergers, Non Verbal Learning Disorder, ADHD, Obesessive Compulsive
Disorder, Depression. (to name a few). However none of these diagnoses were
forthcoming until I had to be insistent based on my intensive research into
each one.
I would like
to hear from families who feel they are in the middle of, or have been through
some significant behavioral issues with these children and have wondered if
they were connected to cystinosis but had no
information.
Apart from
the intensive routine of medicines, there is another side to Cystinosis that
only the families themselves can really know and understand. We need to give as
much information as possible regarding this, as through this research it may be
possible to make more connections to Cystinosis than we realized.
This subject would be
presented at the next Cystinosis Conference in San Diego in August and we would
have a chance to discuss the similarities in these children emotionally and
behaviorally, and also provide some practical advice for families who are
experiencing problems in this area. It is important to provide our medical
researchers with this information but it is also very important to help
families realize they are not alone when dealing with these daily issues.
I urge you to write to
me regarding any experiences you have had relating to this subject as it will
be invaluable information to all of us.
Mrs
Belinda Broughton
My email:
brubel2@aol.com
Belinda Broughton