Doodle
Jaxjacky I’m so sorry. You must all be in shock. In time you will learn about this illness and the fear now will fade as you get to understand more of what is involved. The right treatment makes such a difference. Hope you all have a more peaceful night tonight.
Jax - this from Doodle is really important now. You must feel that a bomb has just been dropped into your normal family life! I feel so sad for your DD who probably can't think what to do next after all the recent news. This doesn't even describe just how Imogen must be feeling - along with her little brother.
But the big thing will be for you all to learn as much as you possibly can about something which sounds frightening and difficult to handle. That way you will be getting things back into your control and feel much better about a life-changing condition that you will all have to manage.
It's great to hear that the hospital's Neuro department is renowned and that her ongoing treatment will have been well-researched and supported. The right words from the medical people involved will make such a difference now.
Three people with epilepsy have figured in my life at different times: the first, an adult - stressed, over-tired, burning the candle at both ends and not taking good care of himself, had a major seizure in the countryside, shooting! He frightened himself and his friends, he was told to stop doing anything on his own and near water, operating machinery (no driving) etc., and put on medication. He spent a year and a half quite anxious about life - as you can imagine - until he started doing things again. He never had another fit in his life and came off medication within the first couple of years. The second - a child - had lots of small seizures and it took a long time to obtain a diagnosis. The child became an adult and grew out of the seizures completely. The third, pre-adolescent, entered into a life-long struggle with his parents, messed with his medication, drank far too much and too often and against the sound advice of his medical team, didn't look after himself, decided to party at every opportunity as he grew older, often got into trouble with the law as a result and has pretty much single-handedly ruined his life. Given all the chances that he has had and the support, you can imagine how sad his parents have been about the whole business. Sometimes you can't help people, but often it depends on how they react to such a diagnosis from the outset. Not sure he had enough proper counselling and at the time of his diagnosis the world was a very different place - information was just not so easy to come by.
So, a long-winded way of saying once the initial shock has faded, and as soon as you feel able, get as much information as you can on this condition and how best every aspect should be approached in order to lessen the impact on Imogen and allow her to become knowledgeable and even accepting.
There's a really good guide "Childhood Epilepsy - A Guide for Parents" with a lot of information, questions answered and content from, amongst others, Great Ormond Street Hospital. This can be downloaded and is considered a first rate resource by the BMA for parents whose child has recently been diagnosed. You can download this through the Young Epilepsy Charity. They have a helpline for all and any questions and advice 01342 831342, which might add something to facts which you have already been provided with by the Hospital.
If it seems really scary and a bit overwhelming for Imogen, she just needs to focus on the fact that once her medication is able to stabilise her condition - a process of some trial and error - she could be seizure-free. As long as she regularly takes her meds, takes care of herself and manages an adult approach to the new things which life now presents, she may have no further trouble.
She also needs to focus on the fact that after 1 year of being seizure free, it's possible to apply not only to drive again but even to learn to drive. That doesn't sound too hopeless, does it, and such facts may do something towards lifting her spirits right now.
Along with hope the you feel calmer soon and are able to sort your thoughts regarding the impact of the latest news, I'm sending every good wish that her pain is better and that her leg heals soon and she'll feels strong again.
I shall bid you goodnight, dear Kitcheners. What a marvellous support group you are. Too tired for other news and I bet you are too. Will catch up tomorrow but just to say that I adore that Boris Dog, Yiayia . Who couldn't love that little teddy face!
Night night from France, where today has been like a Sauna!
x
and a multitude of virtual hugs.
