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Ehlers-Danlos Support UK
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Occupational therapist

My son ( young adult) has been referred to an OT, he has hEDS & POTS, just wondered how they can help him ? think we’ve been left without any support for so long, it’s really difficult to ask for support

Be grateful for anybody else’s experiences

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An occupational therapist tries to help people having difficulty with aspects of daily living. Before he sees him/her your son needs to look carefully at a typical day. So for instance, how is with getting up? Is he dizzy first thing, his blood pressure low? (a drink with electrolytes help with that by the way and a little snack brings up the blood sugar, I have a raw carrot). Is he at college/work? How does he get there? Does he dislocate easily? What activities cause most problems with this? During the day what does he struggle to do more than his contempories? Would aids help? You don't mention how his diagnoses affect him, some of us hyperextend whilst some dislocate merely by sneezing and spend much of the time in a wheelchair or on crutches. Some find compression garments and medication help with POTS others manage it with electrolytes, extra salt and fluid. If your son isn't having or has never had specialist physio the OT is often a good one to refer him on for that or other services he/she believes might help. It is worth getting your son to ask him/her what experience and knowledge he/she has about the conditions, he might have to do some educating! Who referred him to the service? Was it rheumatologist/cardiologist or GP?

Get him to note what difficulties he has had during a particularly bad day, it may be that learning to pace helps.

Hope this has been helpful.

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Very helpful, thank you.

He was referred to OT by EDS specialist. He is having problems with falling down the stairs and his knee displacing quite often now.

He keeps a daily diary so hopefully will be able to give the info needed.

Many thanks

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OK that's good but has been referred to a physio because improving muscle tone helps with both eds and pots. Large muscle contractions help to prevent blood pooling sending blood back up to torso and brain preventing dizziness. I have been seeing one privately for 12 months and it has helped me enormously, NHS I'm afraid is rarely able to help with this.

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Ahh, I’m sure it will be helpful, just day to day living and making life a little easier for him.i think if he had been diagnosed earlier we both would have been more educated at everything .

I think they will be able to help with the little things that are very difficult for him, but we’ll wait and see

Thank you

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Unfortunately late diagnosis is common. I got diagnosed last year at 54! A lifetime of trying to help myself with physio and minor surgeries, finding out how to manage digestive problems and fatigue whilst raising 2 boys with similar problems, as well as asthma, eczema and hayfever and still had to go private for diagnosis and after care. It's appalling!

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Hopefully your OT will be trained in the techniques of eliciting information about how the condition is affecting the patient and in goal setting. So the first appointment will be going through what Steeny said, and then coming up with some goals and then a plan of how to get there.

My son was 14 when we went and was having trouble with tying shoelaces and writing. Those were refined into goals, (learn to write every letter of the alphabet in printing not joined up, and tying shoelaces) and then he developed a plan with us. Along the way he gave us tips to do this sort of thing ourselves as well.

I have had a couple of sessions with a hand specialist who is an OT for the arthritis in my hands, and again, we looked at what was difficult for me to do, choose some goals, and the plans to get there were a combination of exercises and splints.

Oh, and my son can write all the letters of the alphabet but at the OTs suggestion he concentrates on typing, and he can tie his shoelaces if he had them!

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Sounds very useful

Thank you

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