How young is too young for DS?

[KathrynK]

This article from today's The NY Times is about WLS in adolescents, using the case of a 15-year-old, 5'2" 240 lbs who wanted surgery. About 1,000 teens had WLS last year (of the 3-4 million American teens who meet the qualifications). The article refers to only two surgery options, sleeve gastrectomy and gastric bypass. I was going to write the reporter to include DS in future stories, but it raised the question in my mind if the DS is appropriate for a teenager, given all the years they have to develop some of the nutritional complications of surgery and the likelihood that an adolescent would follow all of the guidelines carefully for the rest of their lives.

This quote reminded me how devastating it is to be a very overweight teen: “I am less concerned about osteoporosis than that their lives will be completely destroyed if they don’t get some serious weight off,” said Dr. Lee M. Kaplan, the director of the weight center at Massachusetts General Hospital. By completely destroyed, he adds, he means “medically, socially and economically.”

Is 15 years too young? If so, what age cutoff would you have for DS? I am struggling with the answer.


https://www.nytimes.com/2017/02/24/...iatric-surgery.html?smid=tw-nytimes&smtyp=cur

 

[hilary1617]

My 13 year old son is now SMO. Due to Cushing's disease, his BMI and weight *doubled* in the course of a year and is still trending upward. If his weight doesn't improve significantly subsequent to pituitary tumor resection this summer, we will likely seek a DS for him the summer of 2018 at age 14.

 

[southernlady]

I know of one person who was 17 when she had hers but was very mature. Most adolescents do not have the support of a DS family member unlike @hilary1617's son.

I honestly think it depends on the adolescent's maturity. It also depends on family support if the adolescent is underage and not working to support their lifelong vitamin habit. But then again, there are supposedly mature adults who shouldn't get the DS.

 

[galaxygrrl]

I think if someone is a teen and is looking at weight loss surgery, they are mature enough to handle the DS. These are kids in pain and have gone off to the Drs. And my guess is their families are supportive.

My reaction to this whole journey is the sooner you do it the better. If you are SMO in HS, you should get something done. The eat less, move more plan has not worked.

 

[DianaCox]

It depends.

A mentally retarded child with Prader-Willi syndrome can have a DS after puberty, to address the intractable hunger and misery, because s/he will always have someone else to supervise their diet.

The 17 year old (whom we all supported and loved) died at age 23 from - and I'm not sure of this, but from what I recall - liver failure possibly related to nutritional deficiencies - she had little to no family or social support, and a very very rough upbringing, followed by a period in which it appeared she had a promising future, which then devolved into something less than that before she died.

There are MANY DSers who don't have any business having had the surgery, because they are not capable of self-care.

The intestinal portion of the DS can be substantially reversed laparoscopically if someone loses too much or becomes nutritionally compromised. IF they seek help.

 

[Munchkin]

It depends.

A mentally retarded child with Prader-Willi syndrome can have a DS after puberty, to address the intractable hunger and misery, because s/he will always have someone else to supervise their diet.

The 17 year old (whom we all supported and loved) died at age 23 from - and I'm not sure of this, but from what I recall - liver failure possibly related to nutritional deficiencies - she had little to no family or social support, and a very very rough upbringing, followed by a period in which it appeared she had a promising future, which then devolved into something less than that before she died.

There are MANY DSers who don't have any business having had the surgery, because they are not capable of self-care.

The intestinal portion of the DS can be substantially reversed laparoscopically if someone loses too much or becomes nutritionally compromised. IF they seek help.

I have never understood what happened to her either. We talked on FB now and then and she was doing fine. Someone said liver failure but I have no idea if that's true or just what someone said. When non-medical people discuss medical information, things tend to go all pear shaped fast. Plus her family said almost nothing.

I am certain I could have dealt with the DS as a teen. And as someone who grew up fat I can say for sure I would have been willing to do it. What's a couple handfuls of vitamins compared to what people go through as fat teens? Nada. But the medical community in general doesn't think we have suffered enough yet. Just think of how great it would have been to have the surgery young, when your skin was still elastic enough to snap back.

And what you said is exactly true. The malabsorbtive part of the surgery is easily reversed. However...I do know of 1 person who had the DS at 16 and started gaining serious weight in her early 20's. She had exploratory surgery and found her CC was 170cm longer than it was originally. They theorized it grew back, mostly because she was so young. Possible? Probably but not likely. Maybe a combination of some regrowth and a sloppy measuring job!

Me personally, if I had a fat teen, I would still push for the DS. I wouldn't want anyone to have to live their whole lives with the RNY.

 

[-Flo-]

I think VSG is fine for a teen but not the DS. I don't think they are mature enough to understand the consequences of non adherence to vitamin regime. If they need the DS later, they can always get it.

 

[Larra]

I think this is one of those things that calls for individualization of medical care. Some teens are more mature than a lot of adults and can handle the DS just fine. Others are too immature, even at the same age. And we all know people who never seem to grow up, but that's another subject.
At least most teens could handle a sleeve. The vitamins and such would be a minimal concern, esp for someone who is not yet physically fully grown, though they would have to make more effort on the diet side. If it doesn't prove to be sufficient they could add the "switch" part at a later date. There have been scattered articles about very young individuals having sleeves and doing well. These are extreme cases, some with metabolic disorders or other medical conditions that have caused them to become MO or SMO very young, some otherwise healthy. There is no good reason to force a youngster to suffer with the physical, medical, and emotional toll of MO until they reach some arbitrary age if they (or their parents) are ready and able to deal with the surgery.

 

[Eztli]

I do not like the idea of a teen having the D.S, even if they are exceedingly mature. I was a younger sleeve, (maybe, not sure what the average age is) I had the sleeve done at around 21. But this was not difficult aftercare. The big thing for me is not the maturity to advocate for your own health by watching your labs and taking your vitamins (you could be 60 and not be able to do this) but having the support to do so. My parents died when I was young, I did not have siblings or family to watch out for me. The vitamins alone required after D.S that are not covered by insurance can cost a tremendous amount. Though I am older now, I still worry about what happens in say 20 years, I lose my job, and my savings and an unable to pay for vitamins which I will need. Or, I could be wrongly convicted of a crime (I know this seems like a ridiculous thing to worry about, but volunteer for innocence project so I see it a lot) and have to go to jail, where I would surely die because I assure you, no matter how many Drs tell the prison system you need something, it does not mean they are going to give it to you. I would hope that in that situation I would be covered by some sort of medicaid that would allow me to go to a surgeon who would hopefully understand my predicament and do the "kissing" procedure to undo the switch part of my D.S.
Anyhow, now that I am older and more financially secure than I was when I had the sleeve, I still wonder about someone whose in their 20's and has financially volatile times ahead. Of course its different if you have parents, or aunts and uncles, or family of some kind who would step in and help you out but I didn't, and that of course influences my opinion now.
As for the sleeve by itself, I wish I'd gotten it when I was 10 and saved myself the misery of being fat in middle and high school.

 

[Munchkin]

I do not like the idea of a teen having the D.S, even if they are exceedingly mature. I was a younger sleeve, (maybe, not sure what the average age is) I had the sleeve done at around 21. But this was not difficult aftercare. The big thing for me is not the maturity to advocate for your own health by watching your labs and taking your vitamins (you could be 60 and not be able to do this) but having the support to do so. My parents died when I was young, I did not have siblings or family to watch out for me. The vitamins alone required after D.S that are not covered by insurance can cost a tremendous amount. Though I am older now, I still worry about what happens in say 20 years, I lose my job, and my savings and an unable to pay for vitamins which I will need. Or, I could be wrongly convicted of a crime (I know this seems like a ridiculous thing to worry about, but volunteer for innocence project so I see it a lot) and have to go to jail, where I would surely die because I assure you, no matter how many Drs tell the prison system you need something, it does not mean they are going to give it to you. I would hope that in that situation I would be covered by some sort of medicaid that would allow me to go to a surgeon who would hopefully understand my predicament and do the "kissing" procedure to undo the switch part of my D.S.
Anyhow, now that I am older and more financially secure than I was when I had the sleeve, I still wonder about someone whose in their 20's and has financially volatile times ahead. Of course its different if you have parents, or aunts and uncles, or family of some kind who would step in and help you out but I didn't, and that of course influences my opinion now.
As for the sleeve by itself, I wish I'd gotten it when I was 10 and saved myself the misery of being fat in middle and high school.

There was a DSer on that other site who spent more than a year in prison postop. If I remember correctly some kind of tax issue. She made it through and was working on getting her labs back up where they should be.

 

[Larra]

@Eztli I understand your concerns. With teens, it's the same for the DS as it would be for, let's say, a kidney transplant. Both the teen and the family have to be ready for the aftercare. The vitamins for the DS, the daily meds for a transplant that, if not taken, will lead to rejection of the kidney, proper diet, etc. It sounds like you, as a teen, would not have had the necessary support to stay healthy with a DS. Other teens do have that support, be it financial or emotional, so why should they not be considered for this lifesaving operation?
If anything, the situation is more concerning for a transplant, because there is always someone else who could benefit from that kidney, while no such resource is lost when someone doesn't take care of their DS.
And as far as prison goes, from what I've seen no one with ANY significant medical problem gets the care they need there. So, would you rather go to prison with a DS, or would you prefer to go to prison MO with diabetes and/or high blood pressure and/or sleep apnea, etc and not have THOSE problems properly treated during your stay?

 

[revisionDS]

I have wondered about this often, should a teen wait? how long? something better on the horizon any time soon? this is difficult if it is a family member, especially a child to make this decision.

 

[hilary1617]

In my son's case, DS is an easy decision. Simply, it is clear that it will pave the way for the best possible present and future.

Staying SMO and gaining more are not options. He already has heart damage at age 13 and the possibility of an early death is real.

I have had DS and so he, his father, and I know exactly what that takes. We are comfortable financially and can arrange to pay for his vitamins and care (now and after we are gone).

He went from 100 lbs at 11 to 200 lbs at 12 and at 13 is now pushing 240. His muscles and frame can't keep up with his weight. He is no longer able to enjoy most physical activities. They cause him pain. His puberty is delayed. There will likely be lasting socio-emotional implications. His sense of being and self-confidence, which will stay with him forever, are being shaped now.

Dieting and exercise are proven not to work 95% of the time. The sleeve offers restriction only and in my view is not sufficient for SMO patients. I don't want him under general anesthesia and risking infection and complications twice when it could be done in one operation, particularly while his brain is still developing. I don't want him to move along a course to receive substandard or inadequate care simply because he is young.

He is bright and disciplined. He is in flight school and training to be a pilot - he maps out the flight plan, handles the weather, communicates with the tower and flies the aircraft unassisted (with an instructor present - no solos until his is 16 and has a license!).

He already takes multiple pills several times each day on a complicated schedule due to his Cushing's and Hashimoto's (Levoxyl - early morning, Metformin and Vitamin D with dinner, Ketoconazole at 8 and 10 pm).

Now, his weight gain is known to be due to a pituitary tumor (Cushing's disease) which generates too much ACTH which causes his adrenals to generate excessive cortisol, which over time has numerous dangerous effects well beyond the weight issue. We will first try to take out the pituitary tumor, then if that doesn't work to resolve the cortisol excess, he may be a candidate for bilateral adrenalectomy (removal of his adrenal glands).

If after we get his cortisol under control, he doesn't lose much of the excess weight (as some cured Cushing's patients do), we will seek a DS for him. It's his best option.

 

[Larra]

@hilary1617 you have clearly thought this out very well and your son and family are well prepared to deal with a young DSer. I can't imagine a better decision for him, assuming he needs it after all the other stuff is done. Your son is very fortunate to have such exceptional family support.

 

[revisionDS]

@hilary1617 thanks for sharing that highly personal information, I also have a child, he is 18, he is my baby he has a bmi of 36, I just don't want him to suffer like I did and I know he is not MO. He is still young, doesn't have any major health problems, but both his parents have weight issues (mine is cured with the DS). Hopefully when he goes to college in the fall things will get better, but I will have to see.