DESI

[Guest guest]

Beofre I would spend the enormous amount of money needed to get to BALT and

housing, etc for KKI's opinion, I would certainly search the west,.

California - anyone know of good people out there? there are major research

facilities outs there. Joan - if you are listening - I know you love KKI

but what doyou know about the west?? Heck - maybe even British Columbia??

Seems to me, one could travel for Europe cheaper than to get from Hawaii to

Balt - I just looked up some airfares and was absolutely floored@!!!!

>

>

>

> Dear Margaret,

> Yes that is how I believe help will be found if we are free to give our

> strong opinions....and still accept each other....hee hee....I have joined

> here at the heighth of my own despair (lucky you all) though balanced with

> the joy that Wesley's heart has been repaired....

> well C. has no trouble with bedside manner ...he is a sweet

> dispositioned man....and he is cute too which can help you to accept more

> readily all he says...I just did not like that everyone who walks out has

> the suggestion for R when it IS a dangerous drug....and prescribed for a

> child with a bad heart condition is wrong with a capital W........but in

> your case gee how can anyone comment unless in your shoes....you used your

> brain and got the help you needed.....

> Wesley has been marked as self injurious.....he sucks on his hands and the

> tissue gets damaged in the winter....that is the extent of it....to see him

> bang his head or anything else would break my heart and I would want it

> stopped....

> anyway....I suppose we are on the same page ...feeling parents should think

> and do their homework....and if Desi or anyone else would feel better to at

> least check it out then it is worth every cent...even that visit I had ,

> though I felt it was more a research appointment than a visit for the well

> being of Wes, was I suppose good as I now know that place is ruled out as

> far as a place to go for help on his development.....

> I just think the terms DS - autism specialist and DS-autism researcher are

> not one and the same and should be used appropriately....

> Hugs back, truly,,....Annie

>

> > To:

> > From: duffey48@... <duffey48%40aol.com>

> > Date: Fri, 15 Jan 2010 07:09:21 -0500

> > Subject: Re: Anne

> >

> > Well, you KNEW I'd chime in, right??? LOL

> > First of all, welcome Anne, from the supposed *co-moderater*, but we all

> know that MB is in charge. I am here for those RARE brief moments when she

> asks me to be.

> > My take on KKI , , and all others is that like anything in life, a

> good fit is needed. was a good fit for us, and I have a great deal of

> respect and admiration for him. Regardless of how you feel about bedside

> manner, rush to judgment, take on meds.....or whatever opinion folks come

> away with, he is a man who is devoted to individuals with DS. And I have

> always approached like any other medical professional I have dealt

> with in the almost 29 years that I have been a mother.....they work for me.

> *I* am the boss, and ultimately me and my family make decisions when it

> comes to our own situation at the time. I recommend that parents read,

> learn, ask questions, and make their own choices.

> > Risperdal was a life-saver for us. Maybe for others, it merely made a

> difference, maybe a slight one, maybe not at all, and maybe some had a bad

> experience. Maddie was 9 years old, and heavily self-abusing. We

> waited...and waited...and waited...and put off drugs, believing that

> behavior techniques were what was needed. In the meantime, our baby was

> headbanging and somersaulting herself into oblivion. My husband and I made a

> decision that if we ever did the drug route, it would be for HER, not for

> us. We made the decision, after MUCH deliberation and discernment, to try

> risperdal. She stopped within 3 weeks. Certainly, it's not for everyone, but

> it was the right one for her at the time.

> > BTW, we no longer take Maddie to KKI. I love , and he has been very

> very good to us (and continues to be), but I need to be more local, so

> Maddie now sees Dr. Pippin at CHOP. So far so good.

> > Welcome again Anne. We're a very diverse group with strong opinions, as

> you can tell. But we are very supportive of each other, and of our varying

> paths we take on this unique and challenging journey!!!

> > Hugs,

> > Donna

> > > <<trying to find a reason to prescribe risperadol to my son....oh, only

>

> > > a " low dose " of this anti psychotic drug (that can grow breasts on

> boys.) My

> > > husband who is a physician is adamantly against this as am I for any

> child to

> > > be experimented on at this point with this drug>>

> > >

> > > Hi, Everyone....Anne....Everyone has their opinions here --- even

> strong

> > > ones that others don't agree with. That is OK. It's a shame that your

> > > husband and you are so adamant about not trying the Risperdal --- yes,

> in HIGH

> > > doses it MAY cause breast development in males, but that is rare.

> Gareth's

> > > been on a low dose for over 10 yrs now and doesn't show any signs of

> > > breast development. Study after study has shown that LOW doses of

> Risperdal MAY

> > > help SOME autistic kids with behavioral, SIB, and speech problems.

> You're

> > > new to the list and I won't bore you about my son's remarkable life on

> > > Risperdal, but he's never been in a Life skills classroom, always in

> regular

> > > classes/learning support classes, wouldn't have gone to PSU Lifelink

> > > (college for spec ed kids) without it, nor would he be talking today.

> Like Sara's

> > > Eli, he has tried many meds but the Risperdal/SSRI combo is what keeps

> him

> > > in our world and allows him to function and enjoy life. If meds don't

> > > work for a kid, then you take them off of them, but at least one can

> say they

> > > tried.

> > >

> > > Take care, Everyone.

> > > Magaret

> > >

> > >