The Diagnosis

Well, almost ten years after she was born, and seven years since we first went to the hospital with her painful knees, Lucy finally has an official diagnosis. Elhers Danlos Syndrome.

It's a little ironic that it should arrive in May, EDS awareness month.

She will still be seeing the rhuematologist at the hospital and possibly have physio therapy, but she's had that before and it didn't help.

As it is Elhers Danlos Syndrome Awareness Month I will tell you a little about Lucy's condition. In fact there are seven types of EDS, Classical, Vascular, Hypermobility, Kyphoscoliotic, Tenacin-X deficient, Arthrochalasia and Dermatosparaxis.
Lucy's type is is Hypermobility.

• She has hypermobile joints
• she has suffered dislocations/subluxations
• she has reflux
• she has gastro symptoms
• she bruises easily
• she has joint pain
• she takes longer to heal

There are also implications for the future with autonomic problems such as POTS.

As always getting a diagnosis is a bitter sweet experience. It's good that you have an answer, a reason for your child's problems. It's also good that the medical professionals are recognising the problems and will do what they can to help. It's never good finding out that your child is ill, particularly with something incurable.

I also have some good news. I posted back in February about Lucy's alopecia. Well, it seems to be stopping, her hair loss is very little now and the growth is doing well. This is a photo of brand new hair grown from her being completely shaven last June.

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.