Increase in Ehlers-Danlos (especially hypermobility type) patients?

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Specializes in Med Surg.

Hello,

First, Ehlers-Danlos is a real disease that afflicts people in various ways.

However, I have recently noticed a huge upswing in patients being admitted with the EDS hypermobility type.

These patients share very specific traits:

Chronically ill. Laundry list of diagnoses (or claimed diagnoses) including Lyme Disease, fibromyalgia, mast cell activation disorder, gastroparesis, POTS, dysautonomia, Mold toxicity/sensitivity (but reactions don't occur when they don't wish them - say with friends visiting). Always on medicinal marijuana.

They seem to be able to walk perfectly fine, but also have very sporty wheelchairs. They almost always have ports. They are able to eat when they want, and swallow pills when they want, but they have extreme desire for GJ PEG tubes, which they immediately insist all of their medications go through.

They are always young, 20's or early 30's and female. They appear healthy looking. And they demand, and get tons of PRN IV benadryl.

The first patient I had with these traits got her coveted PEG tube, but was ravenous during her NPO period after surgery. She was disappointed to be told she could not eat until 24 hours after the tube was placed. I went in to start her tube feeding (and tell her she could eat) and when I checked her gastric residual, I pulled out what looked like chocolate shake.

She said, "Oh...my tube is telling on me!" I said, "What did you do?"

She had drank an entire carton of Kate Farms (they ALWAYS demand Kate Farms) chocolate tube feed. Then she proceeded to order a regular lunch tray and eat the whole thing. With zero nausea or vomiting.

But then when tube feeding started at 10ml hour, she complained of "bloating." What the??

Is anyone else seeing an increase in this type of patient? Has EDS hypermobility type become a "desired" diagnosis?

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Specializes in Surgical, quality,management.

Not EDS so much as idiopathic gastroparisis.

Always young women, white, middle class backgrounds but also history of sexual abuse, parental divorce that was poorly dealt with or bullying. They all mostly went to the same private school.

All underweight so gastric emptying studies are inconclusive.

All want PEGs, PEG-J, when that stops fullfilling thier needs its port or Hickmans, home IV fluids and then home TPN.

When one is admitted another will turn up a day later. Really manipulative with staff splitting skills. Minimal engagement with mental health services and many who have eating disorders as well.

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Not EDS so much as idiopathic gastroparisis.

Always young women, white, middle class backgrounds but also history of sexual abuse, parental divorce that was poorly dealt with or bullying. They all mostly went to the same private school.

All underweight so gastric emptying studies are inconclusive.

All want PEGs, PEG-J, when that stops fullfilling thier needs its port or Hickmans, home IV fluids and then home TPN.

When one is admitted another will turn up a day later. Really manipulative with staff splitting skills. Minimal engagement with mental health services and many who have eating disorders as well.

This is interesting. We place G/J tubes all the time in my Dept. I've had one or maybe 2 EDS/similar condition and they fit this profile. I have idiopathic gastroparesis and thank my lucky stars that I most likely will never need A tube to eat. I failed the gastric emptying scan over a decade ago and I definitely don't have an eating disorder. I think the stereotype you're describing is intended to fit those without a definitive dx. I'm not offended or anything like that I'm just surprised others are like that!

FTR I am a young, white, middle class female but without the childhood trauma

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Hello,

First, Ehlers-Danlos is a real disease that afflicts people in various ways.

However, I have recently noticed a huge upswing in patients being admitted with the EDS hypermobility type.

These patients share very specific traits:

Chronically ill. Laundry list of diagnoses (or claimed diagnoses) including Lyme Disease, fibromyalgia, mast cell activation disorder, gastroparesis, POTS, dysautonomia, Mold toxicity/sensitivity (but reactions don't occur when they don't wish them - say with friends visiting). Always on medicinal marijuana.

They seem to be able to walk perfectly fine, but also have very sporty wheelchairs. They almost always have ports. They are able to eat when they want, and swallow pills when they want, but they have extreme desire for GJ PEG tubes, which they immediately insist all of their medications go through.

They are always young, 20's or early 30's and female. They appear healthy looking. And they demand, and get tons of PRN IV benadryl.

The first patient I had with these traits got her coveted PEG tube, but was ravenous during her NPO period after surgery. She was disappointed to be told she could not eat until 24 hours after the tube was placed. I went in to start her tube feeding (and tell her she could eat) and when I checked her gastric residual, I pulled out what looked like chocolate shake.

She said, "Oh...my tube is telling on me!" I said, "What did you do?"

She had drank an entire carton of Kate Farms (they ALWAYS demand Kate Farms) chocolate tube feed. Then she proceeded to order a regular lunch tray and eat the whole thing. With zero nausea or vomiting.

But then when tube feeding started at 10ml hour, she complained of "bloating." What the??

Is anyone else seeing an increase in this type of patient? Has EDS hypermobility type become a "desired" diagnosis?

I did have one pt like this but I was only with her for a few hours. Do you work with these pts often? That's a very specific profile down the PRN Benadryl.

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Specializes in Med Surg.
I did have one pt like this but I was only with her for a few hours. Do you work with these pts often? That's a very specific profile down the PRN Benadryl.

Not very often, but quite a few of them lately in a row with frighteningly common traits.

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Specializes in Surgical, quality,management.
This is interesting. We place G/J tubes all the time in my Dept. I've had one or maybe 2 EDS/similar condition and they fit this profile. I have idiopathic gastroparesis and thank my lucky stars that I most likely will never need A tube to eat. I failed the gastric emptying scan over a decade ago and I definitely don't have an eating disorder. I think the stereotype you're describing is intended to fit those without a definitive dx. I'm not offended or anything like that I'm just surprised others are like that!

FTR I am a young, white, middle class female but without the childhood trauma

No offence was meant by any means. I know actual idiopathic gastroparisis exists and one of the struggles with my team is trying to weed out those who have obvious mental health / trauma issues that are not being managed and those with a true problem that is physiological only.

My colleagues and I do wonder if this school that a lot of them attend has a teacher that is abusing students but we cannot prove anything.

I would like to rant more but it would identify my hospital as there are only 2 in my state/ few more in the whole country that manage these patients.

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Specializes in Psych (25 years), Medical (15 years).

Interesting...

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Sounds like the Netflix series afflicted.

I don't see these patients on the general medical floor. The ID clinic I work at does get a lot of referrals for patients with chronic Lyme and some with parisitosis. But those are a bit less debateable conditions.

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I'm very confused on how gastropariesis can be due to a mental issue. Your stomach becomes paralyzed. You vomit, have constant nausea.

I'm curious as a idiopathic gastropariesis person. I had the study done. It was very conclusive. The nuclear medicine people said they had never seen someone not digest even one piece of the egg in the 2.5 hours, but I had not.

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I'm very confused on how gastropariesis can be due to a mental issue. Your stomach becomes paralyzed. You vomit, have constant nausea.

I'm curious as a idiopathic gastropariesis person. I had the study done. It was very conclusive. The nuclear medicine people said they had never seen someone not digest even one piece of the egg in the 2.5 hours, but I had not.

I think what she is trying to say is these particular patients she encountered do not have a conclusive dx. Mental health comes into question because they are stating they have symptoms and insisting on specific interventions for an issue that may not actually exist.

ETA-she states many have eating disorders which is psychiatric dx in itself.

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No offence was meant by any means. I know actual idiopathic gastroparisis exists and one of the struggles with my team is trying to weed out those who have obvious mental health / trauma issues that are not being managed and those with a true problem that is physiological only.

My colleagues and I do wonder if this school that a lot of them attend has a teacher that is abusing students but we cannot prove anything.

I would like to rant more but it would identify my hospital as there are only 2 in my state/ few more in the whole country that manage these patients.

I didn't realize you meant the students literally are in the same private school. That sounds very very suspicious.

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Specializes in Psych, Corrections, Med-Surg, Ambulatory.

Since they all come from the same school, is there any conversation between the hospital medical director and the school administration? What about the parents? Would it fall under the purview of an investigation by the public health department? When young people start receiving invasive interventions for problems they don't really have someone really needs to investigate and intervene. For every person with a legitimate medical or psychiatric disorder, there are any number of wannabes who don't want to be left out.

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