Wednesday, 4 February 2015

Getting to the Bottom of it all!

Lucy had her x-ray and as I suspected she is not suffering from constipation. So now the GP had referred her to the gastroenterology unit at the hospital to see if they can find out what is going on.
Will we find out some answers or will she be referred back to the psychologist? Only time will tell. We have been down the psychology route before though without any success.

I believe that everything is connected and that Lucy has Elhers Danlos Syndrome Hypermobility type. It's not something readily diagnosed though, particularly as this type is so similar to Hypermobility syndrome type III which Lucy already has a diagnosis for. I sometimes wonder if chasing diagnosis is always the right thing to do, particularly when there is no real cure or treatment. However, having these things stated clearly on her medical records could prove useful in the future if any further problems occur.

The main symptoms that Lucy has are:

hypermobile joints

subluxation of joints

joint pain and fatigue

easily bruising

gastro problems

keloid scars

Two of my other daughters and myself are also hypermobile and have been treated for joint pain/clicking joints. We all bruise easily too. The boys seem to have escaped.


Our next hospital appointment is on 23rd March. We are also waiting for a CT scan appointment to see how well her neck is doing. She seems fine, although she does get some pain occasionally. She has adapted so well to having limited movement, you wouldn't really notice if you didn't know. We are also still waiting for an appointment with the rhuematologist which I may have to chase up.

In other news, Lucy is now on her third week of full time school and is doing really well. She had a fall last week which was worrying, her legs where black and blue but as she stated, her neck wasn't hurt. She limped for a couple of days and now her friends seem afraid of playing with her. She fell during a playtime game of tag. It hasn't phased Lucy at all, so despite our worries I guess we can't wrap her in cotton wool. She does seem to enjoy going to school now.



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