I hope I’ve spelt that correctly……. Yesterday we had an appointment at Birmingham Children’s Hospital with the ketogenic dietician.
It had already been a bit of a day with a 9.00 am appointment at a wheelchair clinic in a different hospital. A 10.10am GP’s appoitment and me finding out there was something wrong with my left pupil – it looked as though it had been dilated and was now pulling ……… probably not helped by me worrying about it after everyone I spoke with told me I must go to A&E. Even Jude’s GP was ‘concerned’ .
Anyway, I digress. This new diet is not really going to be an easy a we thought. It will be made up of lots of different components – sugar, fat, protein (I think) and other ingredients. These all come in powder format and a certain weighed measurement will be mixed together and then mixed with water to make a formula feed. From memory of my meeting I think this is called a modular feed. This way you can alter the levels of each component to suit the individual child….. easy enough hey? I very much doubt it.
We will then have the issues with constipation which I gather can be ‘not pleasant’ but the ketogenic dietician seemed positive that as Jude’s current feed doesn’t contain any fibre he shouldn’t notice too much of a difference ……. mmmmm, I think I reserve judgement on that. The dietician I saw was brilliant and spent nearly an hour with us.
Another bit if a downer is that with tube fed children the feeds have to start slow, i.e. a 20 hour feed – ooh what joy. That said I am willing to try anything to help Jude’s seizures.
We are looking at June to start the diet. Following my experiences of June 2009 I really didn’t want to spend the boys birthday’s in hospital. Poor Joe last year missed out on his party at home and had Happy Birthday sang to him in HDU with him pretending the candels were lit!
Onwards and upwards is what I say. The 19th is our next hurdle now, we just need to get through this operation.
My eye? ……… after our appointment , I went to another hospital to the eye A&E department and spent two hours with my dad and Jude in A&E. And the verdict…… I had changed Jude’s hyoscine patch that morning (in a total rush) then must have touched my eye. the drugs in the hyoscine patch are those opthamologists use to dilate people’s pupils – God what a blonde am I ? I finally got home at around 5.00pm totally shattered, with my dad who had been a total star looking after me and driving me all around Birmingham. Think we should give him ‘Best Dad’ award for all he did and does for us.