Alopecia, Telogen Effluvium.

Since Lucy had her operation last year she has had a lot of hair loss, alopecia, specifically Telogen Effluvium. This is where there is a widespread thinning of the hair all over the scalp, but not necessarily causing bald patches. I can be caused by lots of things but in Lucy's case it has probably been caused by the stress of her operation. It cannot be treated and will eventually stop.

When Lucy had the halo fitted before her operation I put all her hair up in a pony tail. This left her forehead free for the surgeon to screw in the halo at the front. The screws at the back were put through her hair. Then when she had her operation the ponytail was still there but her head was shaved at the back and on the right side. When we were finally able to release her ponytail most of her hair just fell away because it had been shaved from the root. She wasn't really left with much hair, but she still had her fringe and enough to tie up in a ponytail. With the halo on it didn't really matter.

It wasn't really until after the halo was removed that I noticed she was still losing hair. At first I just thought it was loose strands coming free from around the halo, but then I realised it was what was actually left of her hair that was falling out. Every day her clothes would be covered in hair, every morning her pillow covered in hair. I did worry if there would be anything left at all.

The shaved areas started to grow again, first the side which grew really quickly, then the back which has been slow but is growing steadily. Her original hair which wasn't shaved is still falling out, but the new hair is growing well. Maybe it will all even out in the end.

This weekend I was able to sweep all her hair into a ponytail, the freshly growing hair is finally long enough.  Her hair is not growing where she has scars but I'm hoping that eventually it will be thick enough for it to be unnoticeable.

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This photo is a weird angle but it is actually the top right hand side of her head where she had the bone graft taken, her ear is just below the bar on the right of the picture. It gives some idea of how high up she was shaved.

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.