My name is Damian,
My mum will tell you all about me.
Damian was born in 92, after a very difficult pregnancy.
I was sectioned due to faetal distress.
The first few days damian spent his time in SCBU due to colour changes.
A week later we took him home, although for whatever reason gut instinct I guess things just never felt right.
Three months later he was admitted to the childrens ward because of vomitting and weight loss.
The doctors take on this ” I wasnt feeding him properly”, will add here he was not my first and never had any problems with his sister. Anyway they decided at three months to put him on solids and gaviscon, which never stopped the sickness all together.
Damian went for his 6 month check up he was not meeting his goals and I pushed for a referral to see a specialist which came another 6 months down the line.
We saw Dr B who was a paed and told me there was nothing wrong with him put him on the floor and give him a chance to meet his goals and stop comparing him to his sister, as you can imagine I was not pleased.
So between me and health visitor we fought for second opinion, so glad someone was on my side.
Another 6 months down the line very little had changed.
By then we were off to see another paed who listened to what I had to say which was a nice change.
He admitted that not all was well but didn’t know exactly what was wrong and so the tests began: starting with the CT scan , nothing all was clear and normal so that was it cerebral palsy appeared on hospital letters etc. The same with the MRI and every other test.
Just 2 weeks before damian’s 2nd birthday was his first seizure the usual answers it was a febrile convulsion.
2 weeks later He had 3 in quick succession this time I was ready I took his temp which was at 32.2 so it was low if anything, not that I know what I’m talking about the thermometer wasn”t accurate blah blah blah, Damian slept for a solid 36 hours then woke as if nothing happened.
We were given rectal diazepam and sure enough week later we needed it and straight back in.
By this time the doctors were starting to wonder so an eeg was set up for 4 months later.
Guess what normal and the next and the next by this time he was on epilim and sent for eeg after eeg. Until one day nearly a year later we were referred to a neuro professor stevenson and yet another eeg.
This time Damian’s physio came with us and we went to the eeg and the appointment and he took blood etc.
On the way home he took what was then known as a grand mal (tonic clonic ) thankfully his physio was there to witness this, she was the first professional person to see it so I was very relieved.
Low and behold the eeg picked up activity showing myoclonic and short waves.
Yayyy at last.
We were then told he had SMEI but didnt fit the pattern for any syndromes so still no diagnosis and no reason behind it and the mediaction was chopped and changed I cant even remember the amount of combinations he was on.
Because of eating problems and reflux we couldnt try the keto, so that was that.
Bad times hit when he was nearly 5 he went into status he was really bad and really distressed so it was steroid therapy for three months.
What can I say but wow his seizures were pretty well under control for that year.
Things were not to stay good for long though as he got sicker and sicker untill he couldnt even keep water down so off we went again. It took him to be transferred and back and forth between a local hospital and sick kids untill finally his own paed came back from holiday 5 months later we got the test I asked for in the first place a ph study.
This was done on the friday results on the monday and as I thought gastro oesphagal reflux and moility disorder.
By thursday he had his peg tube fitted a feeding pump and finally home on the friday. By this time he was 6.
So life went on trying to control seizures and not succeeding, puberty stuck and things started changing.
Damian by this time was on lamotrogine, clobazam and epilim. Things were not very good at all. damian appeared to be falling asleeping and waking up as quick as he fell asleep.
Consultant wasnt worried although she did run it past his neuro didnt think it was anything to worry about.
These “sleeps” got longer and longer lasting days and just waking briefly between them.
By this time his neuro and genetecist had decided to test for something else he was 13 now, they asked if they could but he had been tested that many times for that many things i was not really listening and just said yes whatever you think.
They still had blood in storage so it was no heart ache to us.
Then we had an appointment through with the neuro and Damian was diagnosed with dravet syndrome he had the SCN1A mutation.
Well blow me you could have knocked me down with a feather. so the questions began the medication tweaks began and Damian got worse and worse.
Sept 2006 I thought no something needs sorted this isn’t right so off we went yet again into the hospital at this point he had “slept” the full september weekend.
When we arrived the consultant came to see us, she rang his neuro we tried his rescue med midazolam, paraldehyde and then a phenytoin infusion nothing not a movement. So he was reffered to yorkhill in an ambulance for an eeg.
Once his neuro had seen it he made the decision the seizure he was in NCSE was too bad there was no break.
So we stayed at yorkhill for steroid therapy for a week then another eeg at the end.
Low and behold there was very little change. Meds were still being tweaked but nothing.
I so wanted him on stiripentol but had to go through the protocol to get it.
Things were bleak and were transferred back to our local to head to the hospice from there. There was nothing else at this point we could do.
Unfortunately we couldnt go as damian had picked up pseudamonas on his travels and now over 2 weeks in NCSE he was taking pauses and on morphine just to help.
But needless to say my boy fought and we were transferred to the hospice on oxygen with nebulised and oral antibitoic this was now october his 14th birthday looming. we had umpteen coversations with so many doctors but he never gave up and neither did he.
He finally got stiripentol on the 11 th october he opened his eyes and woke up 2 days later.
No one could believe it let alone the docs he was a miracle.
I decided mabe a little crazily that I wanted to take Damian home he was managing off oxygen taking his feeds again and had suction and nebulisers.
The hospice didn’t totally agree but understood after all this time that I would like to take him home for his birthday so they backed me in my decision to go home.
His temp ws starting to spike again so back on orals and on seizure watch I was determined.
On the way home he was going blue the wheel chair he was in was cack and the suction machine was going flat.Thankfully the community nurses were there to meet us and managed to stabilise him again but I knew what they were thinking. What a bad night constant chest physio constant suction but he desperately needed oxygen and his seizures were getting out of control.
I rang an ambulance at 4 in the morn lifted our emergency bags and left, so much for being home for his birthday. Later on that morn yet again he slipped into NCSE.
My hope never faded I knew he was fighting.
Damians keyworker and another nurse from the hospice came to visit and asked if we wanted transferred back.
No my stubborness kicked in he was getting better and going home. Needless to say his NCSE didnt stop so the next day were transferred back again on the 23rd october his little sisters birthday the hospice were great they had a cake for her and had a party .
His NCSE lasted into the next week.
We were still there on my eldests birthday 7th novemeber by then Damian was oxygen dependant but I need to go home.
Yet again the hospice pulled white rabbits out of hats and got damian a tilt and space wheel chair and oxygen in place at home plus did my paraldehyde and oxygen training preparing us to go home even though it was just for a couple of days. Home we got the middle of november Damian was requiring nursing care chest physio etc. After a couple of days I was happy to go back and hand over and so the pattern was set home every 10 days for 2 days.
Seizures were starting to get better and no more NCSE since the stiripentol started thankfully that was scary times.
Finally we went home for christmas best present I ever had was to get my son home all be it he was on oxygen.
We went back to the hospice for new year then finally we were ready to go it alone and had a month at home.
We started discussing school but I didnt think he was ready untill after easter and at the was 2 half days a week with me present, he was off oxygen during the day and just on at night.
Things improved with his chest and seizures untill 2008 by then he had been off his nebulised antibiotic for 6 months.
Chest infections were starting every time we stopped antibiotic so we made the decision in august to put him on prophylactic antibiotic.
That a big decision to make as it can cause so many problems and not a decision I took lightly.
Even with this he was still taking orals not sure it was working I had put umpteen sputum samples and no sign of pseudamonas.
After a rough winter his seizures were increasing and NCSE creeping in again.
February he was in respite when I got a call saying he wasnt good so we took him back to hospital on the 4th of feb.
Two days later he slipped into NCSE and the dreaded news the pseudmonas was back.
On the 19th of feb we decided yet again to head to the hospice, the girls left to go and pack 10 mins after Damian slipped away in my arms with his gran there too. I will never forget that smile he had the first I had seen it.
Despite being ill the last thing he did was meet the pussy cat dolls back stage and the dedicated the song stuck with you.
Those and that smile are my lasting memories of our hero.
Much love from all at Epilepsy Sucks UK. Please vote to help us help others.