The article written by special teacher Lene Steensen, caregiver and personal assistant for a young man with PWS at “ Living with Support” a special living facility in Holbæk, Denmark, is translated by Susanne Blichfeldt, MD, Denmark (who has known the young man since he was 12 years old, and has held training courses for his staff).
The story demonstrates how a caregivers knowledge, together with written information about PWS (a medical alert booklet) can be lifesaving, and also that you have to insist, if you a not listened to.
Not all medical persons know about PWS.
Stomach pain in PWS can be caused by life threatening conditions
by Lene Steensen
“Live with support” is a house in Holbæk, Denmark, where a young man 38 years old (here called J) with PWS is living. I am his personal assistant. He has his own flat in a so-called “group community”. He has help and support daily especially concerning food and finances.
Last autumn it happened that J, during a Sunday night, experienced pain in his stomach. J called a doctor himself (there are no staff on during the night). A doctor came, and concluded that the pain was due to a non-serious infection, gastro enteritis. When my colleague arrived on Monday morning, J was still complaining about pain, she called a doctor who referred him to the local Hospital in Holbæk. Here they said that the pain was caused by a non-serious infection, J had blood tests that showed signs of a possible infection and he was given penicillin, and sent home. J later said that perhaps the medication helped a bit.. When they looked at his abdomen, they did not find anything alarming, when they touched him/ area of the stomach J only complained very little. As it was my day off, I came to work on Tuesday and was told the story.
We have participated in many courses about PWS, and here through fantastic speakers we have been told how important it is that we react and insist, that the persons with PWS that we are responsible for have a high pain threshold, and need very careful investigation when they have pain.
I called his GP doctor, as I did not understand why they had not made a scan of his abdomen as he has PWS. The GP had not received the papers from the hospital yet. The GP called the hospital.
Now it was lunch time and J had not eaten his lunch. By now, all alarm bells were ringing, so I called his GP again, who at that time had closed for lunch, then I called the hospital They (staff) would not admit J without a call from his GP
So--- if I insisted for a referral to hospital the only possibility was to call 122 (like 911 in the USA). I finally did that, and J was able to walk himself to the ambulance! I tried to explain that I had to call an ambulance as the man, J, had PWS, he had stomach pain and did not eat his lunch!
In the hospital they investigated/touched his abdomen and he complained a bit. They repeated the diagnoses of gastroenteritis, but I refused to take J home before a scan was performed. I had brochures and booklets about PWS with me, and showed the text every time the doctors said something. I think they finally decided for an Ultra Sound, just to “close my mouth”.
When they had performed the scan they were in doubt about the size of the gall bladder and they decided for a CT scan. This showed air in the peritoneum, a sign of stomach or intestine perforation. They decided now for more investigations. J had a tube through the nose to the stomach and all from there was “sucked up”, and he was not allowed to eat and drink. They said it was not an emergency situation, and he had to wait until the next day’s afternoon for a gastroscopy (where you look into the stomach with a so called binocular investigation).
Here (with gastroscopy) they saw he had a hole in his stomach wall close to where the intestine starts. He ended up having an operation, resulting in a very long scar with 25 clamps. They sewed up the hole in his abdominal wall. He did very well, was very brave, and finally had something to eat for the first time the following Saturday (the last time was Tuesday morning). He was sent home on Monday, after 6 days in hospital.
It was Dr Hanne Hove, at the PWS Clinic at Centre for rare diseases at Rigshospitalet in Copenhagen,
It is also important that we dare to insist to the medical staff and doctors, who know more about medical conditions (than me) but perhaps sometimes they do not know all about PWS.
This story had a happy ending, but if I had accepted the diagnoses of gastroenteritis, and had not insisted, for a scan, it could have ended in another way. A hole in the stomach can be life threatening.
Caregiver, for J, PWS, Holbæk, Denmark
Dr Susanne Blichfeldt comments:This is a story about “hole in the stomach”. But not caused by overeating (binge eating). Probably there was an ulcer with perforation. The story tells how important it is that staff is well educated about PWS and possible diseases and symptoms
This article was published recently in the Danish PWS –newsletter: PWS-NYT.