Saturday, 21 June 2008

Home at last!

After 2 further few weeks of trying different anti-epilepsy drugs at different dosages, Ross's convulsions continue and a further EEG test this week showed that his brain activity is still abnormal. As a result the doctors do not seem very optimistic about being able to eliminate Ross's convulsions, or his chances of developing normally. As a further attempt to treat Ross they proposed to try a course of steroids on top of the anti-epilepsy drugs, which will be hard on Ross's body, but given there is a chance it may help we have to try it. This was obviously not what we wanted to hear, but the good news is that we can manage this treatment from home, returning Ross to the hospital a few times for monitoring, so on the evening of Wednesday 18th June we brought Ross home. Fin was over the moon...
Since Wednesday we have been giving Ross his 9 different medications 3 times a day and looking after him as best we can. We're still hoping for positive news when Ross has his next EEG in 2 weeks time.

The response so far to our fundraising for the National Society for Epilepsy has been staggering and quite overwhelming; including Gift Aid we already have over £4000 for the NSE (on top of the almost £5000 for CLIC Sargent); thank you very much to those of you who have donated via our Archies Mountain website. I also cannot thank enough those of you who have sent us emails or text messages of support - these mean so much to Clair and I.
For now, now that we have Ross back home, we will concentrate on trying to get some normality back into our lives.

Tuesday, 3 June 2008


11th May 2008 - Ross David Donnan born weighing 8lbs. All well.

13th May 2008 - Ross was transferred to intensive care in a specialist neo-natal hospital after suffering convulsions. His brain activity was found to be irregular and he was given convulsion controlling drugs. These knocked him out for most of a week but unfortunately when the level of drugs in his system reduced the convulsions returned. An MRI scan showed no brain damage (initial hypothesis) but repeated EEGs showed continuing abnormal brain activity so doctors started to suspect a metabolic disorder.

26th May 2008 - Ross was transferred to the neurological ward in Necker Hospital for Sick Children in Paris where different convulsion controlling drugs and vitamins treatments were started. A rare type of epilepsy is suspected but numerous tests and drug trials are required to confirm which type. After peaking between 80-100 convulsions per day, the drugs at least started to reduce the number of convulsions. 3rd June 2008 - Ross is still in hospital and is having 5-15 convulsions per day, although in between these he at least now sleeps, feeds and poos like a normal newborn. There is still no diagnosis beyond a rare form of epilepsy, so we still have no idea when we'll get Ross home or what his development will be like.

I have agreed with Rich to delay our Mont Blanc attempt until Summer 2009 and to raise some sponsorship for The National Society for Epilepsy. Visit our website and follow the links to donate. Please give generously, and also feel free direct any family, friends and colleagues who you think would be willing to sponsor us to our website.
Thank you very much to everyone who has sent us messages of support - they really do keep us going.