Update on Ryan

At nine months old, back in May 2009, Ryan was a happy little boy - starting teething, able to stand up with little support, rolling around everywhere and starting to talk - just like most babies his age. We could never have imagined what was hiding around the corner!

Ryan caught the Norovirus bug andwas admitted into our local hospital, the Royal Lancaster Infirmary (RLI), for dehydration because he could not keep anything down. He was discharged a few days later and everything started to go back to normal then on the following Saturday, Ryan had his first seizure. Ryan was rushed back into hospital via resus in the A & E department - his first seizure lasting one hour. He remained an inpatient for two weeks whilst they carried out EEG's, a CT scanand an MRI scan and several blood tests. He also lost his vision for up to four days following this seizure. He had not suffered any further seizures during this time and was discharged exactly two weeks later.

Unfortunately, that same night he was discharged, Ryan suffered his second seizure and we rushed him back into hospital. This time, they could not stop it! The doctors tried everything they could to stop them but eventually had to put Ryan into an induced coma and transfer him down to Royal Manchester Children's Hospital at Pendlebury, into intensive care.

The intensivists at Manchester did not think Ryan stopped fitting from the Saturday night until sometime on the Monday and he remained in intensive care for nine days. As soon as he came out of the coma, everybody noticed Ryan doing lots of twitches all the time (up to 20 hours a day at his worst) and nobody could understand why he was doing it. He would not drink his bottle, wasn't moving about as before and could not support his own head - it would flop over if you weren't supporting it.

During our three month stay in hospital, Ryan's case was discussed amongst many clinical professionals and he had many tests - many EEG's, MRI scans, blood tests (of which the Mitochondrial Research Group at Newcastle were testing), skin biopsy, a VER (Visual Evoked Response), an ERG (Electro Retina Gram),an upper and lower limb SSEP (Somata-Sensory Evoked Potentials) and an ultrasound scan. He was fed via an NG tube (nasogastric) for a period of time and was not really interested in any solid food. In September, Ryan had a gastrostomy operation which has now enabled him to be fed directly into his stomach.

Ryan was blessed with an amazing team of consultants and specialists, both in Lancaster, Manchester and Newcastle -and whilst I do not want to name them personally on this website without their permission, they know who they are and we shall be forever grateful to them all for everything they have done for us. Had this team not been involved in the care of Ryan, I am sure that we would still not know what is wrong with Ryan. The diagnosis is not good but at least we can make the most of the time that we have left with our son and are not trekking backwards and forwards to the hospital everyday.

Since we brought Ryan home from hospital, his twitching has reduced, he will never be able to talk, walk or move around like most children his age and still cannot hold his own head up but he still remains able to see, laugh and smile. He is able to spontaneously move his legs and arms on a good day but not "on demand".

Ryan suffered a slight setback when he fell ill with bronchiolitus, followed by a perforated ear drum -both in the first week of December. It has taken him 6-8 weeks to recover fully from this and he is nowgetting back to his smiley, happy self again whichis great to see!