24 Aug Inspector Mumso Strikes Again
Facebook gets a bit of bad press at times doesn’t it?
We all lament over a time when our every move and dirty washing was not always out there in the public domain and look back on happier times when people just used to communicate face to face.
I agree with all of this, however, I have to say – Facebook has come through for me this week.
Following our previous appointment with endocrinology, I started to research the different types of Growth Hormone Deficiency (GHD) conditions there are and how they can present and be treated.
I requested to join the Child Growth Foundation group a while ago and after some discussion and vetting with admin (no doubt to prevent trolls as there are some inhumane shites that would have a field day over our kids pictures), I was accepted.
I introduced myself and Esmé and explained our history, posting one of her cheekier pics along with it.
Immediately several other mums started to ask me if she had been tested for Russell Silver Syndrome. Curious, I had a very quick Google. The images brought up straight away were of children with severe cases of this and I dismissed it outright. Almost offended by the suggestion. I saw the words ‘learning difficulties’ and ‘problems with motor skills’ and I knew there and then that this could not be what they will be testing her for on 12th September.
Esmé is a smart little kid and her motor skills couldn’t be called into question.
As I started to chat with them further, they shared images of their daughters and i felt winded. They were so so beautiful and all looked like my little girl in different ways.
My feeling wasn’t one of despair or devastation but of joy. Am I closer to getting answers?
I took a deep breath and went back to researching.
Russell-Silver syndrome is a growth disorder characterized by slow growth before and after birth.
Babies with this condition have a low birth weight and often fail to grow and gain weight at the expected rate (failure to thrive). Head growth is normal, however, so the head may appear unusually large compared to the rest of the body. Affected children have poor appetites , a small, triangular face with distinctive facial features including a prominent forehead, a narrow chin, small jaw and some asymmetry somewhere on the body.
Diagnosis can often involve many specialists from geneticists, nutritionists & endocrinologists.
Severity can vary, some children just presenting the physical attributes of the condition.
These marvelous mums shared their experiences and I was delighted to hear that their children are living normal lives. Their children were meeting their developmental milestones also and were happy and healthy children.
So whether or not RSS is what we are looking at (I feel like it is. There are too many boxes ticked for it to be coincidence) I know we are looking in the right direction.
One mum, whose daughter was diagnosed after showing several indicators) commented “Whatever it is, it’s nothing scary. There are far worse things that they could have” and she’s right.
It almost felt comforting that we’re not alone. There is support out there.
There is a convention in Warwick for the Child Growth Foundation that i’m going to take myself (and Esmé) along to in October.
Info can be found here: http://www.childgrowthfoundation.org/
I really feel like we are making headway with ‘knowing’.
‘Knowing’, I can do. Not knowing is agony.
Knowledge is power and to connect with these mums has been …. a revelation. Ok, it sounds OTT but it has seemed like a chance to glimpse Esmé in the future and I couldn’t have dared to look ahead this time last year.
It’s positive teeny tiny size 2 steps forward for us.
Thanks for reading.