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(Facebook)   Farker's friend's son most likely has Spinal Muscular Atrophy, please check the link and read the DIT. Please. Pretty please   (facebook.com) divider line 43
    More: Sad, DIT  
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3625 clicks; posted to Main » on 18 Jan 2013 at 8:53 PM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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Archived thread
2013-01-18 09:15:41 PM
8 votes:
Alright, I'm going to be *that* guy because I just went through his with a family member. Prayer, although they make you feel good, does absolutely nothing to help someone who needs serious help. Education is key, not religion:

http://www.fsma.org/research/stemcells/

This is exactly the type of thing that can be prevented if we stopped the prayers and let the scientists do their research without them being accused of interfering with God's plan.

Best of luck.
2013-01-18 11:41:09 PM
5 votes:

babysealclubber: I know you think you're well informed about chiropractors, but 2 quick things:

1. You're not.
2. This is not the time or place for your holier-than-thou approach to medical options.


Chiropractic "medicine" is quackery in the basic definition of the word. They "diagnose" and provide treatment on the basis that subluxations of the spine and joint misalignment are the root causes of all diseases of the human body. Despite the fact that many Chriopractors use X-rays and other imaging techniques, none of these purported causes of disease have ever been identified on legitimate studies. In reality, manual manipulation which amounts to massage, and exercising of joints can be done by a physical therapist cheaper, and on a scientific basis.

It is not "holier than thou" to call out Chiropractic medicine for a modality and method of thinking that belongs in the 1870s, when it started.
2013-01-18 11:47:01 PM
4 votes:

babysealclubber: Dragonflew: Witty Comment:
He was at the baby-Chiropractor and his lung collapsed


Keep babies away from these charlatans. Take them to DOCTORS.

I know you think you're well informed about chiropractors, but 2 quick things:

1. You're not.
2. This is not the time or place for your holier-than-thou approach to medical options.


Chiropractic isn't a medical option. Go sublux yourself.
2013-01-18 11:37:00 PM
4 votes:

babysealclubber: Dragonflew: Witty Comment:
He was at the baby-Chiropractor and his lung collapsed


Keep babies away from these charlatans. Take them to DOCTORS.

I know you think you're well informed about chiropractors, but 2 quick things:

1. You're not.
2. This is not the time or place for your holier-than-thou approach to medical options.


The chiropractor collapsed the baby's lung, and if I'm donating money to something I'd like to know it's not going to pay for a new bone through the nose of one of those f*cking witch doctors.

Take the kid to see a real doctor.
2013-01-18 10:00:12 PM
3 votes:
So sad, but I do not do FB for any reason. I am also a huge believer in letting nature take its course. I just can't see putting anybody through the pain of a seriously debilitating disease just so I can feel better.
2013-01-18 09:07:58 PM
3 votes:
You have my condolences, submitter et all.

Look into a DNR. This isn't a condition that will get better at all. It's something that will get progressively worse, and a child who will gradually lose any quality of life he/she has.

I know it sounds horrifically cold, but sometimes, it's better to give them the best, most comfortable life possible, and let them go when their time comes versus heroics.
2013-01-19 03:55:20 PM
2 votes:

Mr. Breeze: And I agree with babysealclubber. Subby didn't post this here to obtain your righteous insight, and people don't (or shouldn't) come to Fark for any sort of medical advice anyway.


Righteous insight is one thing. That's not what he posted. Instead, he warned subby that going to a quack might result in your special needs child living far less of a quality life and far less of a length of life than he would going to an actual doctor.

Warning someone from going to quacks for false hope and "treatment" that can hurt a child is NOT righteous insight, and telling subby that he/she has been mislead into placing his/her child at risk is basic human decency.
2013-01-19 01:26:42 PM
2 votes:

Dragonflew: babysealclubber: On a thread like this, if your post starts with anything like, "I hate to be that guy, but...." or "you should never do that," they should just realize that adds nothing valuable and not post it

Actually, I don't care what people think of me. If I (and the several people here who agree with me) can convince someone to think twice before taking an infant to a chiropractor, I'll be "that guy". Real doctors and even other chiropractors agree that there is little to no evidence of chiropractic doing anything useful for infants, and is in fact risky. A quote from the chiropractor author of the article: "I don't know of any reason to believe that it might be necessary to refer a child to a pediatric chiropractor or to use spinal manipulation on a child prior to onset of adolescence. "Wellness care" in the form of "subluxation correction" is unnecessary and scientifically indefensible, and it places children at risk."


Yes.
An obvious risk is that the parents will delay vital medical care to a child based on advice from some guy without a medical degree.

If you are an adult with back pain who wants to believe, its your choice. The child has no choice.
2013-01-19 06:42:19 AM
2 votes:

OtherLittleGuy: Here's something to pass along to your friends, Witty Comment

The Julien Fleming Memorial Fund

The Julien Fleming Memorial Fund was established in order to help families whose critically or terminally ill children need treatment beyond the families' ability to pay. Even for those with medical insurance, non-covered expenses can easily soar to thousands of dollars.

/OLG Trusted and Approved


Yes.
I hate to point this out, but without a verified charity you dont know where your money is going. If youre getting scammed, you are not only losing money, you're encouraging a scumbag to steal more. Ive seen obvious ones on Fark before. Donate to a recognized charity in the baby's name.

And a baby chiropracter? Seriously? Stick with a pediatrician. I'm not trying to be snarky, its just another way to waste money that should be spent on baby.

/and this ones in my prayers.
2013-01-18 11:58:04 PM
2 votes:
babysealclubber: "I know you think you're well informed about chiropractors, but 2 quick things:

1. You're not.
2. This is not the time or place for your holier-than-thou approach to medical options."

1. How can you know what's in his mind?
2. Chiropractic is a medical option like astrology is an engineering option.

babysealclubber: "Take it to /r/atheism"

Why don't you pray for that and see what happens? And holy fark does your profile pic ever look like what an insufferable douche would look like. And you sound like one too, I'm imagining the pinched, nasal whine of your voice as I read your posts.
2013-01-18 11:04:12 PM
2 votes:
Here's something to pass along to your friends, Witty Comment

The Julien Fleming Memorial Fund

The Julien Fleming Memorial Fund was established in order to help families whose critically or terminally ill children need treatment beyond the families' ability to pay. Even for those with medical insurance, non-covered expenses can easily soar to thousands of dollars.

/OLG Trusted and Approved
2013-01-18 10:04:21 PM
2 votes:
I'm a pediatric nurse, and I've cared for babies with SMA1. It really is heartbreaking, and DNR is what I'd suggest. His life could be prolonged with a Gtube and a trach, but it is really such an awful disease. I'm sorry for you and your friend.
2013-01-18 09:28:55 PM
2 votes:
Facebook = No
2013-01-18 09:28:34 PM
2 votes:
It's not that I don't care what your whoever's who is having, I'm not clicking on Facebook.
2013-01-18 09:13:41 PM
2 votes:
SMA is a horror. Don't youtube it. Basically, as your muscles no longer get any signals, your body dissolves them, and I'm not exaggerating. Just another reason we should toss money into understanding our own damn bodies.
2013-01-18 09:13:10 PM
2 votes:

Witty Comment:
He was at the baby-Chiropractor and his lung collapsed


Keep babies away from these charlatans. Take them to DOCTORS.
2013-01-18 09:01:04 PM
2 votes:
Wow, I cannot imagine.  So sorry  subby and for your friends.  The grief, the worry, the sadness has to be so intense.  Imagining the baby's suffering and being so helpless.  I assure you they have as many positive thoughts, my version of prayer, and just outright love that I can give them.  And as soon as I am able, I will be absolutely happy to make a donation.  Please update some in TFD.

I am so sorry.
2013-01-20 01:07:48 PM
1 votes:

babysealclubber: I know you think you're well informed about chiropractors, but 2 quick things:

1. You're not.
2. This is not the time or place for your holier-than-thou approach to medical options.


I do know these facts:

-This is a disucssion board. This is a thread about health of a child. This is exactly the time and the place to discuss this.
-Chiros are NINE times more like to be sued for fraud than an MD
-If your Chiro believes in http://en.wikipedia.org/wiki/Applied_kinesiology, they are a quack
-They are anti-vaccination freaks

So...bottom line, unless you are seeing a chiro for simple back adjustments (which are even debatable if they work), Chiro's are frauds.
2013-01-20 12:57:56 PM
1 votes:

babysealclubber: Take it to /r/atheism


Sorry, when it comes to the lives of sick children I'll stick with /r/rationalism.
2013-01-19 06:05:43 PM
1 votes:

Mr. Breeze: BronyMedic: Mr. Breeze: And I agree with babysealclubber. Subby didn't post this here to obtain your righteous insight, and people don't (or shouldn't) come to Fark for any sort of medical advice anyway.

Righteous insight is one thing. That's not what he posted. Instead, he warned subby that going to a quack might result in your special needs child living far less of a quality life and far less of a length of life than he would going to an actual doctor.

Warning someone from going to quacks for false hope and "treatment" that can hurt a child is NOT righteous insight, and telling subby that he/she has been mislead into placing his/her child at risk is basic human decency.

You do know that it's not subby's kid right? If you really want to educate the family on not seeing a quack and using false treatments, jump on over to the Facebook page.


I'm not really sorry my post offended you for some reason. I'm also not really sorry to point out you're concern trolling at this point.
2013-01-19 04:46:26 PM
1 votes:

Dragonflew:

And it was not meant just for subby, it was meant for anyone who would even consider taking their infant to a quack.

2013-01-19 04:29:03 PM
1 votes:

BronyMedic: Mr. Breeze: And I agree with babysealclubber. Subby didn't post this here to obtain your righteous insight, and people don't (or shouldn't) come to Fark for any sort of medical advice anyway.

Righteous insight is one thing. That's not what he posted. Instead, he warned subby that going to a quack might result in your special needs child living far less of a quality life and far less of a length of life than he would going to an actual doctor.

Warning someone from going to quacks for false hope and "treatment" that can hurt a child is NOT righteous insight, and telling subby that he/she has been mislead into placing his/her child at risk is basic human decency.


Reading comprehension is alive after all. Thank you.

And it was not meant just for subby, it was meant for anyone who would even consider taking their infant to a quack.
2013-01-19 02:54:48 PM
1 votes:

babysealclubber:

Look, I'm not stating my opinions on baby chiropractors one way or the other. I'm just saying this type of thread isn't the place for it is all.


I think any thread is a good place to make people think twice about having a chiropractor do anything to their baby. This is not a nice thread full of unicorns and rainbows, so it's not a happy place to say it - but it's a thread that people are noticing and it's on topic. We don't know if the chiropractor caused the lung collapse, but it is a very real possibility. If people know this, it could save lives/injury. Are you against that too?
2013-01-19 12:26:58 PM
1 votes:

babysealclubber: On a thread like this, if your post starts with anything like, "I hate to be that guy, but...." or "you should never do that," they should just realize that adds nothing valuable and not post it


Actually, I don't care what people think of me. If I (and the several people here who agree with me) can convince someone to think twice before taking an infant to a chiropractor, I'll be "that guy". Real doctors and even other chiropractors agree that there is little to no evidence of chiropractic doing anything useful for infants, and is in fact risky. A quote from the chiropractor author of the article: "I don't know of any reason to believe that it might be necessary to refer a child to a pediatric chiropractor or to use spinal manipulation on a child prior to onset of adolescence. "Wellness care" in the form of "subluxation correction" is unnecessary and scientifically indefensible, and it places children at risk."
2013-01-19 09:22:49 AM
1 votes:
babysealclubber: Whiny, and fruity.
2013-01-19 04:58:06 AM
1 votes:
There are a few of us Farkers with SMA here. I'm type II. Your friend could benefit from support groups maybe. They will give mental support, but also information on what to expect and where to get proper care and funding for equpment. That FSMA-link someone gave is a good start, and there more groups in Facebook.
2013-01-19 03:57:31 AM
1 votes:
Subby, I don't know what to say about your friend's son except that I'm sorry and that my heart aches for y'all and that poor child. I just had my second child, who is three months old and I couldn't imagine how awful it is for everyone involved. All I can tell your friend is to hold his child close, show him all the love and tenderness possible, and enjoy the time he has with his son. All the advice I can give you, subby, is that you help them out as much as possible, let them vent to you, and just be there for all the good and bad.

/children should never suffer
//I don't know why some of them are doomed to it
///I'm gonna go hold my kids as tight as possible and be thank the fates they are healthy
2013-01-19 12:41:03 AM
1 votes:
Probably already been covered, but isnt this exactly the kind of thing that FarkUS was created for?
2013-01-19 12:39:52 AM
1 votes:

Witty Comment: I'm not even certain that the Chiro collapsed the lung. I remember him saying those things close together, but you have to understand it was a pretty emotional story for him to tell.. he jumped around a lot, he had just left the hospital after five days, and I very well could have misheard something too. It just so happened that I was the first person he said he had really gotten a chance to sit down with for a brief second, and after speaking with him I was more than compelled to do ANYTHING I could at that point. I'll try and update as needed but I'm sure the family will update the Facebook page with any pertinent information, as everything there is more related to the greater issue at hand: the baby and his family.


I showed my daughter the links provided and we were both in tears. She was in the neonatal ICU for a few weeks after she was born. My heart goes out to this family. Please keep us updated.
2013-01-19 12:32:35 AM
1 votes:
I'm not even certain that the Chiro collapsed the lung. I remember him saying those things close together, but you have to understand it was a pretty emotional story for him to tell.. he jumped around a lot, he had just left the hospital after five days, and I very well could have misheard something too. It just so happened that I was the first person he said he had really gotten a chance to sit down with for a brief second, and after speaking with him I was more than compelled to do ANYTHING I could at that point. I'll try and update as needed but I'm sure the family will update the Facebook page with any pertinent information, as everything there is more related to the greater issue at hand: the baby and his family.
2013-01-19 12:06:28 AM
1 votes:

osmium: Very sorry to hear it. Don't think anyone has posted this yet (?): There is a fairly well-read blogger who has SMA. His site is Laughing At My Nightmare. It's a good read. He seems like a cool guy.


Another one is Jill "Nerdy Bird" Pantozzi.
2013-01-19 12:03:44 AM
1 votes:

Shaddup: Dumb question. How do I donate without having a facebook account?


Direct link to Funding Page
2013-01-18 11:50:16 PM
1 votes:
Just told my 11 yr old daughter about this thread and what this baby is going through. I got her a $500 Visa gift card for christmas. Asked her if I could donate $10 of her money to the family. She told me "make it $20".

$20 coming from my little girl Angelina.

Fark is amazing how it takes care of its own. And my daughter is kinda amazing.
2013-01-18 11:23:05 PM
1 votes:
Very sorry to hear it. Don't think anyone has posted this yet (?): There is a fairly well-read blogger who has SMA. His site is Laughing At My Nightmare. It's a good read. He seems like a cool guy.
2013-01-18 11:07:03 PM
1 votes:
I've met a few kids with SMA, mostly type 2 so longer life expectancy. They tend to be mature beyond their years and rather intelligent. Unfortunately Type1 doesn't all them to live this long.

One must really determine the goals of care to decide how much intervention to do. While his life is unfortunately shortened, if the goal of the family is to have him home for his first Christmas, this could be reasonable but would likely require a trach and a G-tube. If the goal is to keep him comfortable while his condition runs its course, this is reasonable and ethical as well and can done without over-medicalizing him.

I'm sorry this has fallen on you and your friend. Illnesses that manifest around this age are in my opinion one of the hardest to deal with because of the family's dreams and expectations of the life ahead. Please remember that there are social work services who are available to help through this period and that Child Life specialists are invaluable for helping siblings understand and cope at their level of maturity.
2013-01-18 10:01:07 PM
1 votes:
How very sad to hear for someone so tiny to go through that. The only suggestion I have is possibly mention Jason Becker's life story. He's had ALS for a very long time now but still manages to communicate and accomplish amazing things. Perhaps that might give a little hope.
2013-01-18 09:32:00 PM
1 votes:
Witty Comment, they are lucky to have a friend like you, who cares so much and is so empathetic.

Bless you for being who you are for them. The parents need you more than their child does. Listen, hug them, be a quiet strength and someone they can cry with. They will be fine, because they have no choice but to take one day and a time and keep living. Just keep being that friend for them. That's what they need more than anything.
2013-01-18 09:29:06 PM
1 votes:
Indubitably : I've been lazy, I know.
Here's the video
Here's where the SMA part starts.
2013-01-18 09:25:08 PM
1 votes:
Um, go to about 28 minutes into the video l linked to for the SMA story. The dystonia part is very interesting as well.
2013-01-18 09:23:36 PM
1 votes:
Just dropped a donation. Behold, the power of FARK.
2013-01-18 09:22:10 PM
1 votes:
Maus III: Do you have any idea what the hell you are talking about? This isn't the flu we're talking about. Please watch this.

http://www.youtube.com/watch?v=BXOTb4ZxKDI
2013-01-18 09:18:00 PM
1 votes:
Here's a very good show...

http://www.youtube.com/watch?v=BXOTb4ZxKDI
2013-01-18 04:00:55 PM
1 votes:
Sad to hear. Spinal muscle atrophy is truly a horrific disease and there is very little hope.

Also not to be an asshole but "baby chiropractor" WTF?????

:-/
 
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