Ramblings of an Aging Mama Bear: Me, Christie & Ehlers Danlos

Ehlers Danlos...so complex. Christie (11) has EDS Type 3 (hyper mobility)...we think. We are still awaiting a definitive diagnosis. It's been an extremely long and painful journey so far & its not over, not by a long shot. Christie also has had 3 positive ANA results which indicate a possible autoimmune disease - which is also being investigated. She is seeing all kinds of 'ists' ~ Urologist, rheumatologist, opthamologist, podiatrist, dentist, cardiologist, psychologist, geneticist and i have discovered that anyone ending with an ist is expensive! She also sees a lovely osteopath..no ist..and therefore not expensive. She loves going to see K because he doesn't usually cause pain.

I have learnt to stand up for my child and follow my mothers' instincts. I no longer put my total faith in the medical profession. I don't take their word as gospel truth. They don't know my child like i do. So i WILL fight for her...don't mess with THIS mama Bear!

There are so many appointments, so much paperwork and quite a few tears mixed in - both mine & Christies. She is struggling so much emotionally & physically. The constant pain is so draining on her.

In her world of pain and anguish I am trying to make happy memories for her. Its rather difficult to be positive at times and i do struggle with this. Don't be such a negative Nancy - be a positive..petunia??

We have 'met' a couple of lovely families online and actually met one of these families in real life - Suzi & young J. Its an incredible feeling when i first stumbled across another mum who knew what we were going through. Made me feel i wasn't going insane and it also helped Christie to feel SHE wasn't going mad and that someone really believed she was hurting, not attention seeking or anything else. So many times people including doctors and nurses, have indicated to her that her pain must be imagined, or in her head, or that she must be depressed or having problems at school or home. For her to be able to talk to another child who is experiencing similar things was such a relief for her.

For a bit more of the medical side of EDS check out this link: but remember - it is different for every child. Ehlers Danlos

I also have some photos of her 'party tricks' which i tell her she cant do anymore because it isn't good for her body. I took the photos so if she feels the need to show her tricks she can show the photo instead! but i will add these later.

Christies feet ~ a work in progress

Most nights C cant get to sleep bacause of the pain she is in, despite pain killers. Sometimes she is still awake at midnight. Looks like our kitten Jizzy had a late night too

EDS is a connective tissue disorder. We are not sure if its the EDS or the possible autoimmune disease that causes this kind of reaction when something lightly presses on her skin. Here i put my hand on her leg firmly for a couple of seconds and this is the result. It happens everywhere, her face, arms, chest, legs, back. Once i remember a nurse freaked out because she thought C was having an allergic reaction to some medication.

Christies hands & feet 'sweat' so much at times that they literally drip. When she writes it runs down her fingers and pencils onto her work and it smudges. This makes her feel sad.