[Barbara Rodrigues]

Hi:

Can anyone tell me the name of an 'great' pediatric neurologist in Vancouver. We have heard of Mary McConnolly (sp). We are looking for someone who is familiar with autism and seizures.
We unfortunately experienced our first seizure on Friday night here in Penticton. And let's see so far, while Jeremy was having his seizure we took him to the walk in clinic where he was diagnosed with a bad case of the flu…'But Dr. I said, he's never had no eye contact, been so nonresponsive, he couldn't hardly hold his head up, drool coming out of his mouth//'DR. Well, he's really sick….

When we left the clinic we got him in the van and he started having facial ticks, that by the time we got him home ended up with full body seizure…
We got to ER and he was given meds there.

Then the pediatrician put us on Dilantin which he is still on (from what I have found out through the internet, not a good drug (behaviorally/mood wise) for our kids plus with the worst side effect profile of any of the anticonvulsants! Now they won't let us get him off this toxic stuff and no doubt the EEG will be read by either just a pediatrician or a neurologist who does not specialize in children and is used to looking at EEG's of stroke victims. Needless to say no one up here as any knowledge of autism. Our own Dr. had never heard of Landau Kleffner Syndrome.

So I am hoping to get Jeremy to someone with more knowledge as I do NOT want a repeat fiasco of what he went through concerning the autism diagnosis.

Onto, that what are our rights as parents of a child as to what treatment protocol we feel is best for Jeremy. So far, I have felt bullied and belittled by the medical professionals. Anyone know where I can find out my rights as a parent.

Jeremy is fine- has not thankfully had another seizure so far.

Thanks in advance for any help.

Barbara
Jeremy's Mom

Please excuse the rant but I am more afraid of the medical staff in this town than I am of the seizures.

[Barbara Rodrigues]

Hi:

I was wondering if anyone going to the meeting on Friday re: Dr. Swallows and WEAP, if they might take notes and email them to me. Being up here in the Okanagan, it's not that easy to get down to a meeting that sounds very informative. Thanks for any help.

Barbara
Jeremy's Mom email joe_rodrigues@bc.sympatico.ca

[Barbara Rodrigues]

Hi:

I have a want ad poster that I could email you. We have to recruit all our therapists as we are in the Okanagan. My last poster has worked really well. Plus I think the time of year has a lot to do with it also, new students starting at the college etc.

Email me directly if you would like a copy.

Barbara – email – joe_rodrigues@bc.sympatico.ca

ps: Don't forget (if you can) to always overhire.

[Barbara Rodrigues]

To the person concerning Alberta. Yes, it's covered in Alberta but you will need a diagnosis from a Dr. who is also ABA friendly (to prescribe the treatment) in Alberta. I would make sure to set up the appointment before you move as I think there are wait lists to see a Dr. I don't think there is much of a wait list for consultants there. The funding is still given through the social services end of it, so you still are dealing with a social worker but it's not near as what it's like here. Alberta's economy is booming so hopefully you can find work there (I don't know how they are if you go there without a job). Be advised you still must pay out the funding for therapists first and then receive the funds back so make sure you are able to do that financially. All in all, it seems to be a very good system for our kids compared to what we have to deal with here right now. If your child is quite young, and you are able to do the move, I would say it's a good choice. They will cover 3 years of programming plus now the ones who fought for funding orginally are preparing to battle for longer benefits as their kids come up to the cut off. I am only speaking from what I have heard from others who have moved not from personal experience. I think if you contact FEAT, they can give you phone numbers of parents who have moved there or contact numbers in Alberta.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi:

This is to the parent considering moving to San Jose, California. If you are on the melist that would be a good place to post your question. If not, I could forward it for you to them if you wish.

You may email me privately if you like.

Barbara at joe_rodrigues@bc.sympatico.ca

[Barbara Rodrigues]

Hi:

Just wanted to let everyone know that there is quite a good article concerning a family who have done ABA with their son, in the September issue of Goodhousekeeping. (Julia Roberts is on the front).

It gives a very positive story.

Barbara

[Barbara Rodrigues]

Hello Everyone:

I bought the Saturday Okanagan paper because there was an article with us and the impact of the court decision. I was about to throw away the rest of the paper but the editorial headline caught my eye. Thought you guys might enjoy it.

EDITORIAL

JUDGE SLAPS GOVERNMENT

The short-sightedness of government decision making was borne out this week when a Supreme Court Justice found the province has discriminated against society's most vulnerable.

Justice Mary Ann Allen ruled the province's failure to fund the only treatment for autism many parents and doctors say is effective violates the Charter of Rights.

Four parents sued the province on behalf of their autistic children to receive government assistance for the highly effective, but costly, Lovaas program.

The decision comes as a mixed blessing for a Penticton mother who led a lengthy campaign to restore funding for her autistic child.

Barbara Rodrigues collected signatures, created a Web site and picketed on a daily basis for weeks after funding for her son Jeremy was cut off by what could only be seen as retribution for the lawsuit with which she was not associated.

She and her husband Joe have been forced to spend their savings and borrow money to keep Jeremy in the Lovaas program, which has been shown to allow up to half of those treated to lead a relatively normal life. Other parents have been forced to stop the program.

The province contended that studies purporting to demonstrate the effectiveness of Lovaas autism treatment have serious flaws and that it is still an experimental therapy. And it was argued court orders to require specific medical treatments could lead to a checkerboard effect in the medicare system with some services constitutionally entrenched and others de-listed.

Justice Allen dismissed such arguments, and though she could not quantify a cost-benefit analysis that suggest more than a million dollars is saved for each autism suffer who responds well to treatment, she sided with the parents in the broad sense.

"It is apparent," she stated, "that the cost incurred in paying for effective treatment of autism may well be more than offset by the savings achieved by assisting autistic children to develop their educational and societal potential rather than dooming them to a life of isolation and institutionalization."

She went on to dismiss the potential for "catastrophic results to the health care system," and stated "if there is a constitutional violation that must be redressed, a remedy can be fashioned without the wholesale destruction of the government's medicare system."

Both sides agree the window of opportunity to help youngsters who suffer from autism is small. The province no longer has any excuse to ignore those who cannot speak for themselves. For their sake, if not for the taxpayer's, it must do the right thing and immediately provide funding where prescribed.

END

I hope those of you who have the time, will take a moment to comment to the editor on this editorial.
They also did a nice article with us.

the web site is http://www.ok.bc.ca

Barbara
Jeremy's Mom

[Barbara Rodrigues]

For those of you in the Okanagan and interested:

Jeremy and I will be on CHBC news tonight at 5 pm.

Barbara Rodrigues

[Barbara Rodrigues]

Hi Everyone:

Just to let you know that Sabrina Freeman, the Director of FEAT of BC will be on CBC radio AM between 6-7 pm. tonight (that's Pacific Standard time) The topic will be the Supreme Court decision.

Still smiling.
Barbara

[Barbara Rodrigues]

Hi Everyone:

Just to let you know that Sabrina Freeman, the Director of FEAT of BC will be on CBC radio AM between 6-7 pm. tonight (that's Pacific Standard time)

Still smiling.
Barbara

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