Harry's Journey

Here is Ryan's story so far . . .

Ryan was born at 2.40 am on the 2nd May 2009. My pregnancy had been normal and I went naturally at 39 weeks. I had him in two hours, although was in labour for 16 hours, no complications. He cried a little after he was born, but was reluctant to eat. I wanted to breastfeed and it was 24 hours before he took to it. He seemed healthy and we were let home the following day. He remained reluctant to eat, and the midwife contined to come near enough everyday. Born he was 6lb 13oz, by 2 weeks he had dropped to 6lb 4 oz, even though he would feed for long periods. It was when he was 14 days old that he had his first noticeable seizure, although I did not know that was what it was. I told the midwife when she came to weigh him and she thought he was straining to go the toilet so I thought no more of it.

The second time he did it was that same day and when the midwife came on the Sunday I told her and she said if he did it again to take him the hospital. I said OK, he was weighed and had lost weight again, so she phoned the hospital and mentioned his going blue and we got told to bring him in. Was lucky we did, when we were waiting in A+E he had another one, which required oxygen and he was admitted.

They started off by treating him with anti-biotics in case it was a viral infection, he was put on Gaviscon in case it was reflux, and also started on Phenobarbitone. He was not having many fits a day then and when he would go long periods they would think the meds were working. They were in touch with Alder Hey and the consultant there refused to take him until he had a seizure that lasted 5 minutes. But I did not know that Ryan would be so bad. When we had been in a week he started clustering and was given IV Midazolam which sent him to sleep for 24 hours and made him fit free for 4 days. They had said he was having seizures by this point. He went for an outpatients EEG at Alder Hey in that first week and I still don't know properly what it revealed. They just said that it showed something on the left side . . .

He was also on Phenytoin by now, having to be cannulated regulary because he had rubbish veins. On the Sunday when he had been in for 2 weeks we were told we were as controlled as we were going to get, would get seen as an outptient and that he could go home in maybe a week or less. We were made up and were allowed to take him for a walk out of the hospital. We only got as far as the main enterance doors when he had another apnea. I rushed him back down and it took several minutes, then for the oxygen to bring him around.He got transferred to Neuro Medical at Alder Hey the same day. He was on Phenobarb and Phenytoin still, plus Gavison and Rinitidine for reflux.

It was the start of a long hospital stay . . . During his stay he has had 3 lumpar punchers, muscle and skin biopsy, 2 MRI's, 5 EEG's, chromosone tests, ect, which came back as normal. He has trialled a few medications - phenobarb, phenytoin, pyrodoxine, carbamazapine, clobazam, vigabatrin, Nitrazepam, sodium valproate, clonazepam, sulthiame, Lacosamide, steroids and the Ketogenic diet. None of these have really ever controlled his seizures apart from the Phenytoin where he went down to 20 ish a day, but his levels always dropped after a couple of days.

One test came back positive - for reflux. The rest were negitive. On Tuesday 27th October he had his 5th EEG, which confirmed the diagnosis of Migrating Epilepsy of Infany. I was not suprised as we had been prepared for that all along by his consultant. It was a relief to finally know for sure, because when you have people telling you it is West Syndrome because they have had spasms and are told kids with MPEI can't, when you are told what you have known deep down all along it is a relief, even though devastating. In December, I decided that enough was enough and discharged Ryan from hospital. He came home on the 7th December, has had a brief episode back in hospital for status and for a blocked gastrostomy, was only in a few hours, but otherwise we manage OK. He is now on Morphine for pain, Lacosomide and is getting weaned off the Clonazepam, he has stopped the Phenytoin as it was impossible to keep his levels up, and is on Omeprozole, Domperidone, Gaviscon for his reflux which is on some days better than others. He is also on Lactulose because he is quite constipated. He got a chest infection before new year and went down hill from then. I also know now that he had an apnea in hospital from a photo I have when he was less than a day old and who knows how many he had when I was sleeping or just not looking.

He responds well to Chloral Hydrate for rescues, Buccal Midazolam sometimes, but was started on rectal Diazepam which was stopped as he was unresponsive. He has a plan in place now for when he is unresponsive to his normal rescue meds now that he will have them given by infusion. At 9 months old he is unresponsive to anything, can't hold his head, track or follow, smile, laugh (except during seizures). He can't sit or roll, hold anything, and is in non-convulsive status most of the time. He can have anywhere from 20 to over 100 seizures on bad days.