Re: Tim Re:Antipsychotic Drugs

[Guest guest]

Dear Tim,

First of all, thank you for sharing from the heart of your personal

experience, as well as the information you

come into contact with in your professional role.

You know that I'm a lay member, and also that I have no direct experience

with these questions.

My own heartfelt interest in this aspect of Charge stems from a nagging

feeling that there is a

significant Charge population who's parents come to the manual and/or the

listserv for direction or even just to share experience and find next to nothing

offered.

Some have their situations further complicated by rural geography, and

limited resources.

I would love it if today could be the day when we can all engage in some

open dialogue regarding

the scope of behavior issues clearly found in Charge, and also discuss what

other avenues are

available through current research findings.

By this I mean, information that may not directly mention Charge, but that

are relevant to other

identified multiple birth defect, and/ or genetic defect syndromes that

present with similar behavior profiles.

I understand I am talking about a can of worms, sometimes full of

speculation as to cause and

origin. Yet, I have seen valuable knowledge and workable solutions there,

in spite of the speculative origins or causes.

I'm going to borrow from one to exemplify my point. I have a passing

interest in, and tend to read articles

on JRA. It is now accepted knowledge that JRA and fibromyalgia, and perhaps

other autoimmune

diseases also manifest with bipolar (manic-depressive). Is the bipolar a

result of the same neuro-

chemical " mistake " that manifested as JRA? Or is it a uniform consequence

of living with acute/chronic pain?

It appears as though they don't know. But that doesn't stop them from

prescribing horrible meds

for the JRA, and successful meds for the bipolar. I have on file an article

discussing JRA in

conjunction with Charge.

Last night I read an article from PubMed discussing Autism in conjunction

with Charge Syndrome.

I do appreciate the constraints the list professionals must adopt. But

surely, we can do something

more than what we are doing currently. is 21. It was perhaps

miraculous that we immediately

met a doctor who understood the syndrome thoroughly, considering Charge

babies are still being

born all the time into regional medical systems that have no idea what's

going on. So, as difficult

as it can be to address the well-documented physical aspects of Charge due

to a general lack of information,

how much more daunting must it be to confront these behavioral problems on

top of all the rest.

So, what I'm hoping for is at least an expanded recognition of all the

various duel diagnoses,

and more resources to information regarding behaviors now, even if we don't

yet have a paradigm

that specifically fits Charge. (I doubt that is ever attainable.)

Do we even have a profile of the various neuro docs, or behavioral

modalities that one might research for applicability?

I'm asking for your advise. What more can we offer? How much light,

knowledge, and resources can we bring and share to this aspect of Charge?

Sincerely,

in Ma.