Hi All,
I have drafted and drafted and drafted this post. And to be honest I am having a lot of trouble putting my thoughts onto paper. So I'll try again and see if i can get through this post without hitting delete again.
I never intended this blog to become a personal blog. I wanted it to be about my crafts and things I am passionate about. Being a mother my children are the things I am most passionate about. Recently we have been rocked by some medical relevations. That I'm not sure I quite have my head around yet.
For a long long time I have questioned the extent of my sons bruising and injuries. I have been questioned about how he received the bruises. I have been made to feel like a terrible mother when we go shopping and his head is glued together. And it has become a running joke about how he is so accident prone. Personally I don't find it funny. I find it nerve racking, emotionally and physically draining and heartbreaking. If there's something he can possibly hurt himself on he will. His poor legs are a mottled assortment of old bruises, new bruises and scar tissue from bruises. I'll be honest Its not pretty.
Finally I found a doctor to take me seriously with my concerns and we ended up with the paediatric haematology department in the children's cancer centre at Monash Medical centre. After months of extensive blood testing they ruled all the normal stuff out. At one point they were even looking at leukaemia, I said to my Husband If its not leukaemia I can deal with anything! We got referred onto a geneticist who Diagnosed master 4 with Elhers Danlos Syndrome (EDS), Classic type.
Ehlers-Danlos syndrome (EDS), classic type is a connective tissue disorder characterized by skin hyperextensibility, abnormal wound healing, and joint hypermobility. It includes two previously designated subtypes (EDS type I and EDS type II) that are now recognized to form a continuum of clinical findings. The skin is smooth, velvety to the touch, and hyperelastic; i.e., it extends easily and snaps back after release (unlike lax, redundant skin, as in cutis laxa). The skin is fragile, as manifested by splitting of the dermis following relatively minor trauma, especially over pressure points (knees, elbows) and areas prone to trauma (shins, forehead, chin). Wound healing is delayed, and stretching of scars after apparently successful primary wound healing is characteristic. Complications of joint hypermobility, such as dislocations of the shoulder, patella, digits, hip, radius, and clavicle, usually resolve spontaneously or are easily managed by the affected individual. Other features include hypotonia with delayed motor development, fatigue and muscle cramps, and easy bruising.
Source here
Its alot for us to get our head around. There is no treatment or cure it is something that we have to live with and live around. In November I was rudely woken up to how large this is for us. Master 4 fell down a step and knocked his leg while on an interstate trip. He flayed his shin open meaning an overnight stay at hospital and a plastic surgeon to stitch it back together. not so bad i hear you say... well the stitches pulled through the skin opening up part of the wound. Then once the stitches dissolved the wound hadn't healed enough to hold closed so it opened right up again. We then spent 11 weeks twice a week backwards and forwards to the GP to get his leg dressed and monitored. Luckily we escaped infection but it was quite a drain leading up to the silly season.
Where do we go from here? Having Elhers Danlos Syndrome means my son needs to stay away from contact sports and sports that put unnecessary stress on his joints. (Early onset Osteoarthritis is a reality for us). We will have to see an occupational therapist, as he will tire easily with his writing and other fine motor skills. Making teachers and other caregivers aware of his EDS so they can keep a closer eye on him. We need to teach him about this so he understand why he can not play football like the other kids and have a look at other extra curricular activities that he can do. I am looking into some natural therapies to help him with pain management as I could not think of anything worse than being doped up to the eyeballs to get through day to day. This is not something we need to do NOW but down the track it will happen.
So there you go. That's the answer as to why his legs look so sore and battered.
Do you have Elhers Danlos Syndrome? Do you know someone with it?
How do you cope day to day?
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