I am the parent of a 12 year old boy who was diagnosed with Hyper-mobile EDS just over a week ago.
Like so many, we went through years and years of misdiagnosis and labelling. My "favourite" was when he was labelled with "Rumination Syndrome"; a psychological disorder where you make yourself vomit. Luckily, we had a gastroenterologist who knew that this was a physiological condition and that little gem never got off the ground. (This was in Australia, I should add).
For the past few years, I have not been able to let go of the idea that all his problems must be related; no-one can have that much bad luck with separate health issues. Then I discovered EDS and put it to the GP as a possible hypothesis. Luckily, she agreed it was a "good fit" and here we are
My son suffers (and that is the operative word) with gastritis, gastroparesis, migraine, anaphylactic allergies, eosinophilic oesophagitis, POTS and lots of "things" that don't fit any medical boxes.
We have just finished another stint in hospital where he was on IV only for several days as we tried to get the vomiting under control without resorting to an NG tube - the only thing that has worked in the past. Now, he is home - so a great result on the tube front! However, he remains in terrible pain and we just have to wait until his body decides to settle down (while being careful with his diet of course).
Hopefully, groups like this can help raise awareness of this condition and its many manifestations. What we learned on this hospital visit is how little is known about the condition.
Written by
Faolan
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Hi, I have EDS and also gastroparesis and life is really tough. There is not a lot of choices when it comes to living with the conditions, so I wish him and you lots of luck. Where did you get your son diagnosed? Also has anyone else got it in the family as frustratingly they often don't diagnose EDS if not! X
Hi, my son was diagnosed in England. Australian reference to EDS doesn't even mention the presence of POTS or gastrointestinal problems as part of the syndrome - they only refer to the muscoskeletal elements of the syndrome.
No-one has EDS that we know of - but there is a lot of hyper mobility in the family
Hello and so pleased you got a diagnosis and a starting point now to build on.
Both my two youngest boys 12 and 14 have EDS with far more than hyper mobile joints. Gastric problems, chronic constipation until a bout of c-diff nearly killed him also bone cysts and epilepsy for the youngest, pots, reflux, migraines, chiari 1 for the 14yr old, and spontaneous urticaria angiodema plus vitamin deficiencies due to gastric problems. They now take movicol, vitamins and antihistamine daily plus paracetamols for the pain. Have knee braces and shoulder brace for bone cysts plus youngest has to use wheelchair now round high school.
All this and I had to fight for initial diagnosis for them despite me and family members having EDS diagnosis. Hate to see kids suffering with the "it's growing pains " or" bad diet or stress"
" teenagers get headaches" comments from GP etc when one appointment with EDS consultant and following mri tests etc and bingo diagnosis, physio, meds, orthotics etc etc.
As much awareness as possible to as many as possible including most importantly GP who is the first point if call.
Goodness! I am seeing this common thread. Lots and lots of issues facing people and not much knowledge or even acceptance among medical professionals. Gastro paresis and POTS seem to cause us the most problems. Currently five weeks in to a big episode and no relief yet. No one in our family has EDS diagnosis but we only have a tiny bit if history from maternal line as both me and my son's dad are adopted. I can only imagine how hard it is for your family!
Really great news to hear that you have had some positive news. My daughter, just turned 18, has been vomiting for 12 months now. She has had all the medics ask if she is mentally stable, making herself sick, putting it on etc etc. She has undergone oscopies for England. Finally today we had about an hour with her surgeon who has turned our World on it's head (in a good way we hope). Firstly he has listened, then he has decided to treat our daughter for Mast Cell Activation Syndrome (MCAS). To my understanding, body over produces histamines that cause "adverse reactions" to many drugs, including her building an "allergy" to all six anti sickness drugs she has tried through various stays in hospital. We are trying a low histamine diet, with some success. A couple of things you say about your son triggered lightbulbs in my head. Obviously read up and ask whomever you trust within the medical fraternity. Most doctors have poo poo'd any suggestions we have made. Essentially their "old science" is being challenged by an evolving World and they sometimes cannot square off the fact that some historic diagnosis are simply out of date for certain people (especially people on the EDS spectrum, with accompanying conditions such as POTS, MCAS etc etc). He also mentioned possibility of rhumination syndrome (look that one up too!)
I'm waffling now, sorry. Grown man nearly 52 who sobbed today in front of my daughter, wife, two nurses and a very senior surgeon. Never felt better in my life!
Good luck everyone, keep the faith, you know your children better than any stranger, no matter how qualified!
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Raising EDS awareness in the UK
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