[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Maureen St. Cyr]

Hi Tina:

CEE is effectively closed, but I believe most of
its members are carrying on on their own —
not sure their numbers, but someone else
may be able to help you there. WEAP's
switchboard number is (608) 288-9040 and
their website is http://www.wiautism.com

[Deleted User]

Hello Everyone,

I am trying to locate the contact numbers for both WEAP and CEE. I am having difficulties with obtaining them from directory assistance in their areas. If anyone has either of these numbers, I would greatly appreciate having them.

Also, I was wondering if anyone has worked with Dr. Richard Foxx from Penn State. He informs me he has worked with a few FEAT families. I was hoping to talk to anyone that has met with him.

My name is Tina Linton and my email address is mailtina@home.com. Please feel free to contact me by phone as well @ (250) 385-1703.

Thank you all so much for your time!

[Deleted User]

Hello everyone,
There are, so far, 3 consultants that have contacted us. However, we are do not have an experience with them and we do not know if they are suitable for us.
So far, they are Wendy Cheng, Kimberly Schmittou, and Lisa Wincz. We would like to ask anyone to contact us if they had experience with them.

Currently, we have a 2years/9month old boy requiring treatment. If there are any consultant that is experienced or suitable for us that you know, please contact us.
Our email address is tao@infinet.net

Your help is greatly appreciated.

[Sharon Baxter]

FEAT of BC Sponsored –
Autism Behavioural Therapist Training Workshop

Saturday, March 3, 2001
9am – 5pm
Simon Fraser University
$20 per person

Sharon Baxter and Claire Egan are the presenters of this upcoming workshop. Both presenters are Senior Therapists who have been working with children with autism in home-based programs for the last six years.

This workshop is for parents, therapists, teachers, and teaching assistance who work with children receiving Lovaas protocal Applied Behavioural Analysis treatment. This workshop takes a "hands on approach" to teach participants the techniques of discrete trial traning, and behavioural teaching strategies. Workshop participants will have an opportunity to practice skills they have learned and receive feedback. Individuals of all experience levels are welcome.

Other topics covered include generalization, probematic behaviours and program organization. Throughout the workshop emphasis is placed on implementing and monitoring data collection procedures. Video of children in home-based programs are shown to demonstrate skills and concepts presented at the workshop.

A registration form will be available, at https://www.featbc.org, Current Events, by the end of the week. For more information call, 604-786-3536 or email, sharon_baxter@hotmail.com

[Sandy & Mike]

Hello FEAT parents,

Is anyone familiar with Megan Mills of WEAP? We will be using her as our behavioural consultant beginning in February. If you would tell us a little about her it would be helpful. We have heard good things(from her employer) but it is reassuring to hear a parents perspective. Thank you.

Sandy (Jared's mom)

[FEAT BC Admin]

Subject: Re: Room One: General Topics Discussion
Date: Mon, 22 Jan 2001 23:07:24 -0800
From: "Jennifer Enns"

Hi,

We're Andrew's parents in Chilliwack; sorry to hear about your seizure
episode – it sounded upsetting and frustrating at the very least. I wanted
to reply for a few reasons, not the least of which is that I'm a doctor and
therefore part of the medical establishment and also to reassure you re some
of your concerns.

Seizures, while terribly frightening, are usually not as dangerous as they
look. Partial ones are also amazingly hard to diagnose and the diagnosis
has evaded the most experienced and sensitive clinician (which I likely am
not!) The important thing is to determine the underlying cause, ie febrile
(fever), infectious (meningitis, sepsis, etc), "epilepsy", tumour, or
whatever. The workup is not terribly hard and is something I would not be
unhappy letting our GP do. Starting an anticonvulsant, booking an EEG, CT
scan and eliminating the standard metabolic abnormalities is certainly
within any doctors capability. With respect to drug choices, most
physicians believe that there is no BEST anticonvulsant and to use the ones
you have good experiences with and are very familiar with. That way,
unusual side effects (good or bad!) don't confuse you and you can be
confident what to do if the drug is, or isn't effective. Dilantin is an
older drug and therefore has the longest list of side effects in any manual
(have you ever looked up ASA or Tylenol?) but I'm surprised how often my
most challenging seizure patients end up on it after "better" drugs have
failed to control their symptoms. Having said all that, there are many
other meds available and if you're uncomfortable with it, express this to
who is prescribing it and get an alternative. As always with changing
chronic therapy, remember that you might get something that works better or
worse than what you're on.

A couple of other thoughts (and I hope this is helping), does your child
take any Ritalin or Dexedrine that could have contributed? Such meds can be
really helpful for our kids, but are known to lower seizure threshold.
Also, if he's never had a seizure before and had this one with a serious
concurrent illness, a case can be made to withold treatment entirely – I
have a patient with cerebral palsy in my practice who has a seizure every
three years or so; the parents have decided not to treat her simply because
it doesn't seem worth it to take a thousand doses of a med to prevent one
seizure! For children who get seizures with fevers, some parents have doses
of clobazam (or similar drug) to give at the onset of the illness…I
digress. Suffice it to say there are all sorts of options in
pharmacotherapy for seizures.

By the way, EEG's are often really minimally helpful. If they are abnormal,
they at least confirm what you already know – this person is susceptible to
seizures. But a normal EEG rules out nothing. They also aren't too hard to
read. Most of the time, they come back with some really ingenious version
of "borderline abnormal – clinical correlation required". This is a really
cool way of telling the clinician to use his judgement as to whether the
episode was a seizure or not (and it sounds like you already know).

About your rights as parents? You have all of them! You are entitled to
give or refuse any treatment that is proposed for him. What you aren't
entitled to is to expect doctors to provide what they do not feel is in the
best interest of your child. While this may sound ridiculous, I can tell
you there are patients in all areas of medicine who feel that they should
determine each consultation, investigation, medicine, etc. A sign of a
healthy relationship between your doctor and yourself is that you are able
to expresss your concerns, he/she responds in a way that provides you
confidence (even if it wasn't what you were expecting) and that this is
followed up by a reassessment if necessary. If you don't feel this has
occurred, consider finding a doc who achieves this for you, or look inward
at whether all of your expectations can be reasonably achieved with today's
knowledge. It has been personally painful for me to realize the limitations
of my own profession's ability to assist us with our son's struggles – like
any parent, I wish there was much more that I as a Dad, and a doctor, could
provide.

GE

[David and Barbara McLeod]

Hi Barbara,

Our family has been involved with Dr. Mary Connolly at Children's. We would highly recommend her. If you have any specific questions, please feel free to e-mail us at dmcleod@island.net.

Good luck,

Barbara

[Linda Richard]

Hi Barbara,
I was sorry sorry to hear about Jeremy. I am sending prayers and best wishes your way.

I am not sure if you have heard of the ABMD (Autism BioMedical Digest) list through egroups. There are many individuals on that list who have children who have seizures and have had issues with various meds. It is a great resource, medically speaking. There are doctors and specialists lurking there who are well versed in autism. Just go to http://www.egroups.com and follow the directions to register.

Please take care,
Linda Richard
(Moncton, NB)

[Deleted User]

Help!

I require some quick sound advice on how to deal with a Social Worker, when applying for respite allowance. I have heard that many families offset some of the cost of ABA therapy. How do you "ask" for the money instead of them supplying you with a "caregiver"? Any advice would be most appreciated.

Thanks,

p.s. I will be meeting with a Soc. Worker later this week. :-)

[Peggy Boon]

Hi Barbara: I'm so sorry to hear about Jeremy. I do know some parents who have children that have seizures and I'm sure they also have some knowledge about reputable pedicatric neurologists. I'd be happy to try and connect you with them if you haven't already been successful in finding one. Feel free to e-mail me at: ourhouse@direct.ca

[Author]

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