Lenten “Listening”: Last “Rights” for Neurology (must read)

Clueless Christian ^ | 3/11/2006 | Shari deSilva, MD

[wagglebee]

You know I'm always delighted to help you out. :-)

[cgk]

I was just telling my husband that I've heard from "Down's parents" that their children are the most loving and happy children they've ever had or seen. All they want is to love you.

[cgk]

You're SO sweet :). These days I use all the help I can get, with humble thanks!

[traviskicks]

I have a cousin with Downs and she sounds like your neice. I smile just thinking about her. But, I had never heard of what the author said that 'many children with DS have normal intelligence'. I was wondering if the author was incorrect in this statement. And I believe he is incorrect.

[Conservativegreatgrandma]

Our wonderful niece is in her forties but childlike. She works at a workshop of some kind. She is meticulous in all she does. She had a cat named Fluffy Marie. She had to give up Fluffy Marie when she moved but she was ok with that.

Elaine loves NASCAR and Jeff Gordon. We have a large family and everyone loves her. She gets lots of teasing and she loves it. She can dish it out, too.

[T'wit]

This site offers a different view. It explains some problems with earlier theories of the syndrome, going back to Dr. Downs himself in the 1800s. It suggests both that Downs IQ estimates have been rising for 60 years, and that with better understanding of all the factors involved, IQs of Downs patients may be adjusted even higher, to near-normal and normal range.

To be sure, this is not light reading, but it does seem to shed new light on old and perhaps prejudicial perceptions.

http://home.vicnet.net.au/~borth/DOWN1.HTM

[redgolum]

Come Lord Jesus.

Good is evil, and those who are supposed to heal now kill.

[redgolum]

Been reading a book on the French Revolution, and I am being led to a rather distasteful conclusion.

You can not point out the secular results of the French Revolution without realizing where it came from. It came from the American revolution, (and somewhere else).

[cva66snipe]

despite the fact that many children with Down’s syndrome have normal intelligence. ---- ? is this true?

Many Down's Syndrome persons can live normal functional and productive lives. Most are about the most trusting and loving people you'll ever want to meet. When I was in the 7th & 8th grade some of my best friends in school who had disorders ranging from Polio, autism, MD, CP, Blind, to Deafness plus a few Downs as well would be considered unworthy by the murder mills.

Those two years were to change my life forever and open me up for some reality to come my way later as a young adult & continuing into my middle age.

[sionnsar]

I have a precious niece with Downs. Please, don't anyone ever say it would have been better if she had not been born. She is an extreme blessing. I would not say she had average intelligence but she is above average in love and cheerfulness.

I have heard this so many times...

[baa39]

I've heard this before and briefly worked with Down's children at a clinic. These are children who almost never live to adulthood, who are physically and mentally handicapped, and yet....are loving and seem to bring joy and innocence to their families and all who work with them! Are they a "burden" on society, or could it be they are SPECIAL ANGELS FROM GOD and their purpose in life is to LOVE? Instead of seeing disabled people as unhappy burdens, we need to realize they are GIFTS to us and truly make the world a BETTER place.

[redgolum]

Hitler started with the terminally ill and mentally ill. After the society got used to killing "life undeserving of life", going after Jews and political dissenters wasn't that big of a step.

[Conservativegreatgrandma]

Are they a "burden" on society, or could it be they are SPECIAL ANGELS FROM GOD and their purpose in life is to LOVE? Instead of seeing disabled people as unhappy burdens, we need to realize they are GIFTS to us and truly make the world a BETTER place.

These people are blessings. Liberals are burdens.

[Iwo Jima]

I read your comment about having a hard time finding a doctor for your trigeminal neuralgia. That is a challenge.

I don't mean to alarm you, but a family friend died 3 years ago because her doctors didn't know (care?) enough about TN. She was hospitalized because she had a bad episode of TN that made her unable to eat or drink for over a week. Her husband took her to the hospital for pain medication (IV morphine) and to get her fed and hydrated. She was in the hospital 2 weeks, and was never fed.

To make a long, sad story short, they didn't feed her (just brought trays of food which she didn't eat because she couldn't). They told her and her husband that she was getting fed through her IV, but she wasn't (just dextrose). She developed malnutrition and got pneumonia and died.

So keep searching till you find a doctor who really knows about TN. Just any old neurologist will not do. These doctors just said "if she gets hungry enough she will eat," without considering the fact that she couldn't eat.

Oh, and when she got pneumonia, they strapped an oxygen mask on her which was like a torture device to her for reasons which you well know. She was unable to tolerate it and took it off, which caused them to label her "non-compliant." They put her it resttaints and put the mask back on.

[Iwo Jima]

I just read your website. Very good work you're doing there.

Please read my post #55 (?) to birmingham rain. I believe that the woman I was writing about was the victim of "futilitarianism." She was 63 years old with MS and trigeminal neuralgia, and I think that her doctors and nurses just thought that she wasn't worth the effort.

[Ohioan from Florida]

I was gone for the weekend, but I thank you for the ping! I must add this good doctor to my prayer list. I shed tears for what we have become as a society. We must continue to have courage to speak up and speak out against these outrages.

[Ohioan from Florida]

Excellent post!

[ArrogantBustard]

The French Revolution certainly came from "somewhere else", as did the Bolshevik Revolution. Warren Carroll has written excellent books on both.

The American Revolution has, so far, led to the ongoing holocaust of the unborn ... sometimes I begin to think that the monarchists amongst us may possibly have a point.

[hocndoc]

Thank you for your kind words about my blog.

I think it was probably not futilitarianism - just plain ol' dumb 'cause we didn't think of all the possibilities.

My mother has been very sick over the last 2 years with a wild and crazy diagnosis of thymic carcinoma followed by a persistent paraneoplastic syndrome. If she didn't have a daughter who's an RN and one who's an obsessive-compulsive (when it comes to my moma) Family doc, I don't think - no, I'm pretty sure she wouldn't have survived.

We had to go through the "No, she never smoked." And "No, it's not Parkinson's, it's like myasthenia gravis because of her tumor." And "NO it's not lung cancer no matter what the pathology report says - it's in her THYMUS, so it's THYMIC carcinoma, even if it's squamous cell, small cell type." And -- worst of all -- "Please put her back on the pyridostigmine and steroids so she can roll over in bed and maybe even sit up again, like last week."

Sorry, I had to rant.

Ok. Sometimes doctors are human. We have a saying,"If you hear hoofbeats in Texas, it's probably horses, not zebras."

But, dog gone it, sometimes it's Zebras! And patients shouldn't have to have their own medical staff in order to survive.

That said: the secret to good medical care is to find a good nurse that you like. Feed her chocolate. Call her on her birthday. And ask *her* for help with the doctor.

(I must be having some sort of loose day - I've never said all this before)