Harry's Journey

OSKAR'S STORY as told by his mummy Aly

Oskar started having seizures at 13 days old. We took him to our Doctor who admitted him straight away to hospital. Got home after 3 days, only for the seizures to return after another 3 days. Back to our local hospital, then airlifted to Alder Hey Hospital in Liverpool. We stayed there then until January 06. His condition is rare & early diagnosis is down to our Consultant Dr Appleton having had Harry as  patient with the same syndrome. Staff at Hospital were excellent & made Oskar's life as good as possible. We are Still looking for the "wonder cure" and we know Dr Appleton will not rest until he has exhausted all possible options.

Oskar was transferred to our local hospital at the end of the January 06 and we can took him home shortly after that.  He still has 20-50 seizures per day, is currently self recovering & needs rescue meds every other day or so, sometimes twice a day if he is going through a bad period. Our Consultant Dr Appleton has decided that the way Oskar is now is probably as good as it gets for him, with the combination of Phenytoin & Stiripentol stopping the seizure frequency getting out of control. We knew that stopping the seizures totally was not going to happen & just wanted to get Oskar home so we can get a bit of our family life back. Six months of being away from our other son (6yrs) was a total nightmare. We know the future will not be easy, but being at home will make life so much better for all of us.

It is great to have Oskar with us at home, even though it is difficult. He continues to have many seizures every day & night, however having bought a video monitor & our hospital supplying a Sats Machine, we can sleep a little more comfortably in the knowledge we will be alerted if Oskar is in distress.

Getting him home has also made us more aware how cruel his illness is. While in hospital, you are secure in the fact that medical staff are on hand at all times to deal with any problems, at home it is down to us . We do get great back up support with community nurses visiting, and we get help from our local hospice, who provide excellent qualified nursing staff several days a week to look after Oskar.

 

Oskar continues to have more bad days than good. We are hoping his drug change will have a positive effect (off Phenytoin on Zonisamide)  He still needs rescue meds most days, as seizures tend too make him really unsettled & when he starts to cry, it is nearly impossible to settle him. Has had his central line removed & is lined up for a mickey button in July. Will update any news.

 

From November 2006, Oskars battle became harder for him to fight. He was constantly sick and unable to keep any food down.  I am sad to report that in February 2007, Oskar lost his fight for life and fell asleep peacefully.

Oskars Mummy Can Be Contacted Onheath@manx.net